Things seem to be going backwards. I'm sure all the busy-ness and stress of last week isn't helping. I made it through another funeral, though walking through the cemetery proved to be a real test of the ol' vestibular system. I don't think anyone but me noticed how much I almost fell. At least I hope not.
Headaches are much worse. Mood is worse. Not sleeping as well. And speaking of tests, all the big gatherings with multiple conversations were a real test of the single-sided hearing (doesn't that sound nicer/more positive than single-sided deafness?) and attention span. Both of which failed. Though I am mastering the art of smile-and-nod.
Speech-language pathologist reviewed the questionaires she sent home with me. I was supposed to fill in one section, and then have Matt and my mom fill in two others, to see how our answers compared. Then she finished the formalized test stuff we didn't get to last time. It appears that on the formalized test I did okay, but the answers on the questionaires, combined with the things I've noticed in myself and some things PT has noticed and passed on to SLP (such as not able to do two things at once), warrants some concern. Not conern as in like something terrible is wrong with me, more like there are things I should work on before being "released back into the world". Those are my words, not hers. So after the formal report is written up, she will talk to Dr T about work, etc. There's a chance I may get my driving privledges taken away.
As I said before, I'm just trying to follow directions.
That's pretty much the only news of this week. Next week the appointments continue, including a trip back to the eye surgeon Dr D to see if I'm good enough with the weight or need more cuttin' done to my face.
Please, everyone, wear your seatbelts, obey the speed limit, and eat healthy. I don't think I can handle one more bit of bad news in the year 2009.
Thursday, December 3, 2009
Friday, November 27, 2009
The Two Month Pictures
Two month post-op face.... "regular" face, trying to close eye, and trying to smile.
You can see the scar on my eyelid from the gold weight surgery.
Wednesday, November 25, 2009
Nine Weeks Post-Op
I realized my last post may have been late for "8 weeks", but was right on time for exactly two months post-op. So consider that the two month update. Two month pics to come soon.
It's been an emotional type week. No one could have prepared me for how mentally grueling this recovery was going to be. And I thought I wasn't prepared for the physical. Well that was easy in comparison.
Monday I had myself all prepared to return to work. Just mentally preparing has been no small feat. But then I had my Speech-Language Pathologist appointment Tuesday to check out my Executive Functioning. Most of the appointment consisted of interview, then a little test. The test wasn't too hard, and she said I scored "normal" on it. However, I will quote off the print out she gave me, "Hidden problems are more noticeable in unstructured situations. Problems with executive skills tend to show themselves in unstructured situations. Therefore the problems are not easily observed in formal tests, which provide structure."
She seemed a little uncomfortable with the idea of me driving, and also asked that I postpone my return to work, at least until we're done testing. I have appointments with her scheduled out through the end of the month to work on what ever might be wrong with me, including some facial things like making eating easier as well as the cognitive stuff.
So anyway, everything has been a headache with trying to figure out when to return to work. The neurosurgeon cleared me first but said I could stay out until the 22nd when I was done with OT and had more PT time if that made me more comfortable. Both of those therapists said the 22nd sounded good, more reasonable. Mental therapy is kind of like 'well I don't know if you're emotionally ready, but do what you feel is best for you'. And now SLP says 'not yet'. I'm just trying to follow directions! But I feel like I'm being a worthless employee. My manager has been the absolute best, and I feel bad for putting everyone through this big circle! I wish someone had told me in the beginning to get all these mental things checked out, so I could have been cleared by everything together. What a mess.
I really shouldn't go into all this on a public blog probably, but at this point I want to put it out there as a legitimate possible struggle for other AN patients that read this.
On the physical, headaches still getting worse. The fact that it's rained all week isn't helping. Motrin 600mg is okay at best. They aren't quite migraines, but they aren't comfortable, either!
And last but certainly not least, to top it all off, my grandmother unexpectedly died today.
Love you, Grandy!
It's been an emotional type week. No one could have prepared me for how mentally grueling this recovery was going to be. And I thought I wasn't prepared for the physical. Well that was easy in comparison.
Monday I had myself all prepared to return to work. Just mentally preparing has been no small feat. But then I had my Speech-Language Pathologist appointment Tuesday to check out my Executive Functioning. Most of the appointment consisted of interview, then a little test. The test wasn't too hard, and she said I scored "normal" on it. However, I will quote off the print out she gave me, "Hidden problems are more noticeable in unstructured situations. Problems with executive skills tend to show themselves in unstructured situations. Therefore the problems are not easily observed in formal tests, which provide structure."
She seemed a little uncomfortable with the idea of me driving, and also asked that I postpone my return to work, at least until we're done testing. I have appointments with her scheduled out through the end of the month to work on what ever might be wrong with me, including some facial things like making eating easier as well as the cognitive stuff.
So anyway, everything has been a headache with trying to figure out when to return to work. The neurosurgeon cleared me first but said I could stay out until the 22nd when I was done with OT and had more PT time if that made me more comfortable. Both of those therapists said the 22nd sounded good, more reasonable. Mental therapy is kind of like 'well I don't know if you're emotionally ready, but do what you feel is best for you'. And now SLP says 'not yet'. I'm just trying to follow directions! But I feel like I'm being a worthless employee. My manager has been the absolute best, and I feel bad for putting everyone through this big circle! I wish someone had told me in the beginning to get all these mental things checked out, so I could have been cleared by everything together. What a mess.
I really shouldn't go into all this on a public blog probably, but at this point I want to put it out there as a legitimate possible struggle for other AN patients that read this.
On the physical, headaches still getting worse. The fact that it's rained all week isn't helping. Motrin 600mg is okay at best. They aren't quite migraines, but they aren't comfortable, either!
And last but certainly not least, to top it all off, my grandmother unexpectedly died today.
Love you, Grandy!
Sunday, November 22, 2009
Eight, Almost Nine, Weeks Post-Op
Late yet again in my weekly post. And again, it's not because there was nothing to say in the last week so much as there was too much going on and too much to say!
On Saturday the 14th I managed to drive (in the day) while following directions, and also on the beltway! Matt and I got haircuts, so now I'm back to a short pixie-cut. I'm lucky to have a friend who owns a salon, so she knew ahead of time about the scar / head issues and even alerted the shampoo guy ahead of time that I wasn't going to be shampooed. I'm still nervous about the scar opening or something, and other people touching it, though it never seems to hurt when it's touched (it only hurts randomly when it's being left alone!). Because of having socially acceptable hair, I went scarf/bandana free this week for the first time since surgery, giving the scar it's public debut. So far no weird looks or comments, though sometimes I think people are tempted. Lots of compliments on the hair though, so props to Sarah at Visual Changes! An added bonus, is without the head coverings people seem to see improvement in my face, even though there isn't any.
Friday the 13th, Monday the 16th, and Wednesday the 18th I had PT and OT. I walked on a balance beam! Sandra, my PT repeated my measurements from my initial visit, since I've been with her for one month, and pretty much everything I couldn't do before I can do now. Which is not to say I can do it *easily*, but I do have the ability to stand on one foot. Yey! There are just two muscle groups on the left that are significantly weaker than the right, so I'm working on those at home. I'm scheduled for another month of PT to work on strength, stamina, and continued vestibular training. Sandra also said the swelling in my face looks like it's gone and that the sides look more symmetrical (I think it's the hair).
In OT, I was discharged wednesday! I also showed improvement on all my tests, though she said she would have liked my left-handed 9-hole-peg-test to have been even better. I have an exercise sheet to continue practice at home, as well as the thera-putty. Plus, if after returning to work I notice anything hard in particular I can always go back for some more "fine tuning". One thing I noticed, is that at around two-ish weeks weeks postop I had tried to clap along to a song and couldn't because I couldn't get the left hand to maintain the time. Now I can. So that's always nice.
I've also been fairly diligent in the last week or week and a half in doing exercises on the WiiFit my friend Liz lent me. I don't do the balance ones so much because they annoy me / are really hard, but the aerobic games I like to do use a fair bit of coordination. I also kind of hoped the exercise would help my mood, though I haven't noticed much of an effect.
Speaking of mood, Tuesday the 17th I started with a regular therapist. We ended up going 30 minutes over the hour time and I still could have talked a lot more! I feel like my recovery is "lopsided" because I've been working so hard on the physical, and it's much improved, while the emotional recovery is just barely started. When I've mentioned to people about seeing a psych therapist (I'm determined to not be embarrassed about it), they say things like "Oh yeah anyone who's had a major surgery like that should go talk to someone!" Would have been nice for the docs to recommend when I was discharged 8 weeks ago...
Wednesday the 18th, after PT and OT, I saw my favorite doctor, my corneal specialist Dr L. He immediately came in all excited and said "Smile!", thinking my face was improved (I think it's the hair), only to be disappointed when it wasn't. I told him that Dr T said 9 months to a year, but I wasn't expecting full recovery anyway. He said "well, you know sometimes doctors just don't like delivering bad news.." True enough. I also told him that the plug and celluvisc drops have changed my life for the better but I can't get the stupid Lacrisert to stay in my eye. I think it's because my eyelid doesn't have enough tone to hold it. He said it doesn't matter as long as my eye feels better. My cornea still looks good, even better than last time in fact, so were stretching our visits out to a whole month in between! In the end, I told him "I probably won't claw [my eye] out." He said "Oh good, because it's really hard to get them back in. No really, I really hate doing it." I was like :O JK Dr L!
Thursday was Benjamin's 4th birthday. In honor of it, I had a hearing test and appointment with Dr F (the ENT who did the surgery with Dr T). The hearing test confirmed what we pretty much knew - I'm deaf on the left. Completely. I had kind of hoped something was coming back, but it turns out it must be bone conduction I'm "hearing" or something. Luckily the right ear rocks out on hearing tests still. It's pretty crazy that I had normal hearing on the left pre-op. That only happens in something like 10% of acoustic neuroma patients.
If the deafness bothers me, the tech said I have two choices for aids - a CROS aid, which involves a piece in each ear where the sounds "heard" on the left are sent over to the right, or a BAHA, which is a bone-conduction device that requires a minor surgery to place a tianium bolt-like thing in your head, to which a processor is attached. I've also heard of, via the ANA forums, something called a TransEar, which seems like the best option. It's a bone-conduction aid that doesn't require surgery (which I'm not willing to have right now). Right now the deafness doesn't bother me a ton (it's the tinnitus that drives me crazy sometimes! .. think of sitting next to a white-noise machine turned on full-blast, constantly.) so I'm not rushing to get anything, but those are my options. The tech said some people only wear an aid at places like work and then wear nothing at home, so that might be an option. We'll see.
As for my appointment with Dr F, I love him. He's one of those doctors who has this skill of seeming 100% there and with you, even though you KNOW he's got a packed waiting room outside. The resident came to see me and ask questions first, then came back in with Dr F and a med student. They didn't do as much head shaking as before, but did a little and found I now have some right-beating nystagmus, which they said is due to some compensatory thing. Anyway not a big deal. They reinforced what I'd heard about the hearing stuff, and answered my question that no, my hearing is not coming back and it won't. Apparently the hearing nerve is very frail and weak, even as nerves go, so even though it's intact for it to recover would pretty much be a miracle. They looked in my ear and I have no "water" in there, so no CSF leaks at all. Go me! Or really, go Dr F! Since they have students in that office a lot they have a camera and TV hooked up to their otoscope, so Matt got to see the inside of my ear. Sounded like I must have a good "learning ear", because my eardrum is so perfect and clear that you can see things behind it (bones and stuff I guess?) that you can't normally. At least that's what Dr F told the student.
When it comes to my face, I have a House-Brackmann score of 6/6, which is the worst you can get. I have some tone, but absolutely no movement. Dr F said he's hoping to see me at a grade 4/6 or at least 5/6 when he sees me in March (6 months post-op). If I have no improvement at all, he'd like me to start consider surgery. I'm pretty bummed about that. Even though I have never had hope for a full recovery, I was thinking (hoping) that with the nerve intact I would at least have some smile again one day. And without another yucky surgery. But now I'm scared that won't happen. I see and feel no attempts at a twitch or anything right now. I asked about acupuncture and he said he didn't have any experience with it but if I thought it would help my face or headaches or anything it would be worth a shot. I have to find out if I need an order and call him for one if I do. I've looked up a few things about possible surgeries and I don't much like them. The only good thing is that the one surgery was literally invented by two of the docs at Hopkins (one of whom was the one who was supposed to do my eye surgery except he couldn't see me in any quick time).
I've been having increased headaches in the last week or two and mentioned that at the appointment. Dr F recommended switching to Motrin 600mg (and gave me a prescription) to take round the clock rather than as needed. The only problem with that is you have to take it with food and I haven't had much interest in food lately. I'm certainly not getting up in the night to take it. Still, headaches at this time fits within normal healing apparently so nothing to worry about, which was good for him to say since I was thinking "another tumor already?!"
Dr F ended the appointment with saying he thinks I'm doing really well, especially considering the size of my tumor. He said "We were all really surprised at the size of it when we got in there!"
I said, "So it was about 5cm?" And he nodded very seriously. Then he basically said/implied that they were surprised with what I was doing with that big of a tumor, like going about normal life, etc. This was actually kind of good for me to hear since surgery "recovery" (aka the whole rest of my life after surgery, since I'll never be all the way recovered, and most AN patients attest to feeling like "new/different people" post-op) has been so difficult that I've wondered if it wouldn't have been better to just leave the thing alone. That conversation made it apparent that it definitely would not have.
Yesterday, saturday, was Benjamin's "Spiderman Birthday Party". It was kind of bitter-sweet in a way, as it reminded me of when my surgery was first scheduled for November 10th, and when I told Benjamin about it, he asked "Will you be there for my Spiderman birthday party??" At the time I really didn't know. Whether I would have been in the hospital still, or discharged but not quite with-it, or even not have made it through surgery, was still a question mark. But I was there, and I even was able to participate in things like stepping through hula-hoops. So that's something.
Tomorrow I have an appointment with employee health to see if I'm okay to come back to work, then tuedsay my Executive Function test and PT, wednesday appointment with the therapist. Whew! So many appointments. I realized something for my Executive Function Test, since everyone's been saying "Well I could watch a movie and not understand. That's no big deal." I seem to have lost like common sense fast reactions. For example, I could see a drink spill, and not think to get something to wipe it up until someone else starts to or tells me to. It's weird. Like normal things that don't occur to me. We'll see what happens with that!
On Saturday the 14th I managed to drive (in the day) while following directions, and also on the beltway! Matt and I got haircuts, so now I'm back to a short pixie-cut. I'm lucky to have a friend who owns a salon, so she knew ahead of time about the scar / head issues and even alerted the shampoo guy ahead of time that I wasn't going to be shampooed. I'm still nervous about the scar opening or something, and other people touching it, though it never seems to hurt when it's touched (it only hurts randomly when it's being left alone!). Because of having socially acceptable hair, I went scarf/bandana free this week for the first time since surgery, giving the scar it's public debut. So far no weird looks or comments, though sometimes I think people are tempted. Lots of compliments on the hair though, so props to Sarah at Visual Changes! An added bonus, is without the head coverings people seem to see improvement in my face, even though there isn't any.
Friday the 13th, Monday the 16th, and Wednesday the 18th I had PT and OT. I walked on a balance beam! Sandra, my PT repeated my measurements from my initial visit, since I've been with her for one month, and pretty much everything I couldn't do before I can do now. Which is not to say I can do it *easily*, but I do have the ability to stand on one foot. Yey! There are just two muscle groups on the left that are significantly weaker than the right, so I'm working on those at home. I'm scheduled for another month of PT to work on strength, stamina, and continued vestibular training. Sandra also said the swelling in my face looks like it's gone and that the sides look more symmetrical (I think it's the hair).
In OT, I was discharged wednesday! I also showed improvement on all my tests, though she said she would have liked my left-handed 9-hole-peg-test to have been even better. I have an exercise sheet to continue practice at home, as well as the thera-putty. Plus, if after returning to work I notice anything hard in particular I can always go back for some more "fine tuning". One thing I noticed, is that at around two-ish weeks weeks postop I had tried to clap along to a song and couldn't because I couldn't get the left hand to maintain the time. Now I can. So that's always nice.
I've also been fairly diligent in the last week or week and a half in doing exercises on the WiiFit my friend Liz lent me. I don't do the balance ones so much because they annoy me / are really hard, but the aerobic games I like to do use a fair bit of coordination. I also kind of hoped the exercise would help my mood, though I haven't noticed much of an effect.
Speaking of mood, Tuesday the 17th I started with a regular therapist. We ended up going 30 minutes over the hour time and I still could have talked a lot more! I feel like my recovery is "lopsided" because I've been working so hard on the physical, and it's much improved, while the emotional recovery is just barely started. When I've mentioned to people about seeing a psych therapist (I'm determined to not be embarrassed about it), they say things like "Oh yeah anyone who's had a major surgery like that should go talk to someone!" Would have been nice for the docs to recommend when I was discharged 8 weeks ago...
Wednesday the 18th, after PT and OT, I saw my favorite doctor, my corneal specialist Dr L. He immediately came in all excited and said "Smile!", thinking my face was improved (I think it's the hair), only to be disappointed when it wasn't. I told him that Dr T said 9 months to a year, but I wasn't expecting full recovery anyway. He said "well, you know sometimes doctors just don't like delivering bad news.." True enough. I also told him that the plug and celluvisc drops have changed my life for the better but I can't get the stupid Lacrisert to stay in my eye. I think it's because my eyelid doesn't have enough tone to hold it. He said it doesn't matter as long as my eye feels better. My cornea still looks good, even better than last time in fact, so were stretching our visits out to a whole month in between! In the end, I told him "I probably won't claw [my eye] out." He said "Oh good, because it's really hard to get them back in. No really, I really hate doing it." I was like :O JK Dr L!
Thursday was Benjamin's 4th birthday. In honor of it, I had a hearing test and appointment with Dr F (the ENT who did the surgery with Dr T). The hearing test confirmed what we pretty much knew - I'm deaf on the left. Completely. I had kind of hoped something was coming back, but it turns out it must be bone conduction I'm "hearing" or something. Luckily the right ear rocks out on hearing tests still. It's pretty crazy that I had normal hearing on the left pre-op. That only happens in something like 10% of acoustic neuroma patients.
If the deafness bothers me, the tech said I have two choices for aids - a CROS aid, which involves a piece in each ear where the sounds "heard" on the left are sent over to the right, or a BAHA, which is a bone-conduction device that requires a minor surgery to place a tianium bolt-like thing in your head, to which a processor is attached. I've also heard of, via the ANA forums, something called a TransEar, which seems like the best option. It's a bone-conduction aid that doesn't require surgery (which I'm not willing to have right now). Right now the deafness doesn't bother me a ton (it's the tinnitus that drives me crazy sometimes! .. think of sitting next to a white-noise machine turned on full-blast, constantly.) so I'm not rushing to get anything, but those are my options. The tech said some people only wear an aid at places like work and then wear nothing at home, so that might be an option. We'll see.
As for my appointment with Dr F, I love him. He's one of those doctors who has this skill of seeming 100% there and with you, even though you KNOW he's got a packed waiting room outside. The resident came to see me and ask questions first, then came back in with Dr F and a med student. They didn't do as much head shaking as before, but did a little and found I now have some right-beating nystagmus, which they said is due to some compensatory thing. Anyway not a big deal. They reinforced what I'd heard about the hearing stuff, and answered my question that no, my hearing is not coming back and it won't. Apparently the hearing nerve is very frail and weak, even as nerves go, so even though it's intact for it to recover would pretty much be a miracle. They looked in my ear and I have no "water" in there, so no CSF leaks at all. Go me! Or really, go Dr F! Since they have students in that office a lot they have a camera and TV hooked up to their otoscope, so Matt got to see the inside of my ear. Sounded like I must have a good "learning ear", because my eardrum is so perfect and clear that you can see things behind it (bones and stuff I guess?) that you can't normally. At least that's what Dr F told the student.
When it comes to my face, I have a House-Brackmann score of 6/6, which is the worst you can get. I have some tone, but absolutely no movement. Dr F said he's hoping to see me at a grade 4/6 or at least 5/6 when he sees me in March (6 months post-op). If I have no improvement at all, he'd like me to start consider surgery. I'm pretty bummed about that. Even though I have never had hope for a full recovery, I was thinking (hoping) that with the nerve intact I would at least have some smile again one day. And without another yucky surgery. But now I'm scared that won't happen. I see and feel no attempts at a twitch or anything right now. I asked about acupuncture and he said he didn't have any experience with it but if I thought it would help my face or headaches or anything it would be worth a shot. I have to find out if I need an order and call him for one if I do. I've looked up a few things about possible surgeries and I don't much like them. The only good thing is that the one surgery was literally invented by two of the docs at Hopkins (one of whom was the one who was supposed to do my eye surgery except he couldn't see me in any quick time).
I've been having increased headaches in the last week or two and mentioned that at the appointment. Dr F recommended switching to Motrin 600mg (and gave me a prescription) to take round the clock rather than as needed. The only problem with that is you have to take it with food and I haven't had much interest in food lately. I'm certainly not getting up in the night to take it. Still, headaches at this time fits within normal healing apparently so nothing to worry about, which was good for him to say since I was thinking "another tumor already?!"
Dr F ended the appointment with saying he thinks I'm doing really well, especially considering the size of my tumor. He said "We were all really surprised at the size of it when we got in there!"
I said, "So it was about 5cm?" And he nodded very seriously. Then he basically said/implied that they were surprised with what I was doing with that big of a tumor, like going about normal life, etc. This was actually kind of good for me to hear since surgery "recovery" (aka the whole rest of my life after surgery, since I'll never be all the way recovered, and most AN patients attest to feeling like "new/different people" post-op) has been so difficult that I've wondered if it wouldn't have been better to just leave the thing alone. That conversation made it apparent that it definitely would not have.
Yesterday, saturday, was Benjamin's "Spiderman Birthday Party". It was kind of bitter-sweet in a way, as it reminded me of when my surgery was first scheduled for November 10th, and when I told Benjamin about it, he asked "Will you be there for my Spiderman birthday party??" At the time I really didn't know. Whether I would have been in the hospital still, or discharged but not quite with-it, or even not have made it through surgery, was still a question mark. But I was there, and I even was able to participate in things like stepping through hula-hoops. So that's something.
Tomorrow I have an appointment with employee health to see if I'm okay to come back to work, then tuedsay my Executive Function test and PT, wednesday appointment with the therapist. Whew! So many appointments. I realized something for my Executive Function Test, since everyone's been saying "Well I could watch a movie and not understand. That's no big deal." I seem to have lost like common sense fast reactions. For example, I could see a drink spill, and not think to get something to wipe it up until someone else starts to or tells me to. It's weird. Like normal things that don't occur to me. We'll see what happens with that!
Thursday, November 12, 2009
Seven Weeks Post-Op
Haven't been much in the mood for posting this, quite honestly, but some important things worth noting have gone on in the last week. At this point the blog is going more from a "to inform family and friends" goal to one of "to inform other patients of what I went through" and to be a reminder to myself.
So friday I had the postop visit with Dr T. It went basically as I expected, which is to say it was too short to ask my questions and basically was a quick look-over and a "you look good, no more restrictions, see you in 6 months". Really, I got there at 8:30 for a 9am appointment, got called back at 9:20, and was in there maaaaybe 10 minutes, tops. I decided I'm going to get my medical records for the surgery day so I can just red the report myself to answer most of my questions. He asked what things were bothering me most, and I said my face as it's the most obvious and is the source of a lot of issues, but that's pretty much all we got to talk about on my list. The good news is, he predicts the left side of my face will be mobile again in about 9 months to a year. Sounds like forever, but I guess it's better than "You will need surgery to get it to work again".
Other than that, he did a quick neuro exam and cleared me for everything. This didn't bring the reaction from me one might expect. Instead of "oh yey! I'm fine and can do stuff!", I cried. And cried. Until I took a nap. It's hard to explain why exactly it was so upsetting, but when I posted about it on the Acoustic Neuroma Association forums the other patients seemed to understand, so I guess it's not uncommon. The best way I can think to put it is, I'm tired of people telling me / acting like I'm fine and normal, when I don't feel fine and normal. I know I'm "high functioning" or whatever the right word is, but the fact is, I was much more awesome before, and I don't feel like I'm the same. I do'nt know if I ever will be or if I'm supposed to be. Now, maybe I can get through just fine, but I'm still running the shopping cart into things at the grocery store (why do they have to have so much stuff in the aisles, anyway?) and watching movies without completely understanding what's going on. To me, that's not fine and normal.
I now have an "Executive Functioning Test" set up with a Speech-Language Pathologist to see if I am cognitively "normal" and I'm just psyching myself out or if there is some impairment there. But that's not happening until November 24th. We'll see!
With my new "no restrictions" status, I tried driving last weekend. It's scary. I'm not gonna lie. I totally understand how old people drive now, including their "no highways or night driving" rules. The other day I drove to the mall, we shopped and had lunch, and then I asked Matt to drive home. That tired me out enough that I needed a nap. One fun thing about my brain now is that when it gets overwhelmed, it tells me that it's a good idea to go to sleep, even when it's really not. Like the first time I drove, and 20 minutes into the 30 minute journey my brain said "Okay, I'm done. Let's close eyes now (or, close one and a half eyes, as the case may be.)."
Tonight I tried the ultimate challenge - driving in the dark, in the rain, to a place I hadn't been to before and had to follow directions while driving. I got a few miles in before flipping out and going back home. And I only lasted that long because for some time I was too scared to turn out of the lane to get to a parking lot in which to turn around. So, came home and cried about failing, and made plans to practice more night driving starting tomorrow. The worst part was having to call the person I was supposed to meet and tell her 1) I'm running late, and 2) I'm too scared and can't make it there anyway. The reason I was running late is because I spent a long time researching the route that did not involve highways/the beltway. Hey, at least I tried, right?
I'm thinking I might need an eye patch for the left eye while driving, at least at night. I see double of the lights, which may be due to eye drops, the rain, or just my eyes. I'm nervous about the effects on my peripheral vision, but I can turn my head if I need to. I can't unsee the double things.
Speaking of eye stuff, I also discovered something amazing this week - Refresh Celluvisc. This drop has saved me. It's a super-thick gel-like drop, so I can't see clearly out of that eye when I use it, BUT I only have to put it in every 2-4 hours, instead of every 15 minutes. And no more burning! Celluvisc plus the punctal plug have made the last week about a million times better than the week before. My eye might not get clawed out afterall.
Also cool, when I scratch in my left ear, if the room is quiet, I can hear it! I have no idea if this is "phantom hearing" or some sort of bone conduction or real hearing, but it's exciting to think that there could be a possibility, some years down the road, that I might hear out of that ear again! It would be pretty freaking amazing if my hearing AND face recovered, with the size of my tumor. Someone would have to do a case-study on me or something.
Since I didn't get to list it out for the doctor, here is my list of bothers currently:
-Facial paralysis, sub-bothers of this being: dry eye, numbness/tingling that sometimes hurts and sometimes feels like I'm covered in bugs, food falling out of the corner of my mouth, biting my lips by accident while eating, needing a straw to drink, and sillier things like not being able to blow a proper raspberry on my baby's belly
-Hearing loss - can't hear more than one thing at a time, can't locate things, crazy tinnitus ("white noise"), etc
-Left sided weakness
-Headaches
-Scalp pain
-Big ugly scar (okay, so that's a little trivial but I am a girl..)
-Balance issues
-Fatigue
-Emotional issues
-Forgetfulness / questionable cognitive difficulties
-Swallowing liquids when I don't use a straw. I feel like I'm choking.
I told Matt that I've lost my "Mommy Skills", like passing out snacks while walking through a crowded mall or while driving. I did, however, bathe the kids myself this week for the first time since surgery.
In PT we're working on my stamina along with balance and ability to walk and do something else at the same time. The goal is to get me back to working 12 hour shifts without my brain giving up halfway through and telling me to go to sleep. I've also been working the Wii-Fit every day. I'm pretty good at the boxing, but pretty bad at the balancing.
I'm going to get a new hairdo Saturday, so maybe that'll improve my self esteem / general mood a bit, because frankly it's been pretty bad lately.
So friday I had the postop visit with Dr T. It went basically as I expected, which is to say it was too short to ask my questions and basically was a quick look-over and a "you look good, no more restrictions, see you in 6 months". Really, I got there at 8:30 for a 9am appointment, got called back at 9:20, and was in there maaaaybe 10 minutes, tops. I decided I'm going to get my medical records for the surgery day so I can just red the report myself to answer most of my questions. He asked what things were bothering me most, and I said my face as it's the most obvious and is the source of a lot of issues, but that's pretty much all we got to talk about on my list. The good news is, he predicts the left side of my face will be mobile again in about 9 months to a year. Sounds like forever, but I guess it's better than "You will need surgery to get it to work again".
Other than that, he did a quick neuro exam and cleared me for everything. This didn't bring the reaction from me one might expect. Instead of "oh yey! I'm fine and can do stuff!", I cried. And cried. Until I took a nap. It's hard to explain why exactly it was so upsetting, but when I posted about it on the Acoustic Neuroma Association forums the other patients seemed to understand, so I guess it's not uncommon. The best way I can think to put it is, I'm tired of people telling me / acting like I'm fine and normal, when I don't feel fine and normal. I know I'm "high functioning" or whatever the right word is, but the fact is, I was much more awesome before, and I don't feel like I'm the same. I do'nt know if I ever will be or if I'm supposed to be. Now, maybe I can get through just fine, but I'm still running the shopping cart into things at the grocery store (why do they have to have so much stuff in the aisles, anyway?) and watching movies without completely understanding what's going on. To me, that's not fine and normal.
I now have an "Executive Functioning Test" set up with a Speech-Language Pathologist to see if I am cognitively "normal" and I'm just psyching myself out or if there is some impairment there. But that's not happening until November 24th. We'll see!
With my new "no restrictions" status, I tried driving last weekend. It's scary. I'm not gonna lie. I totally understand how old people drive now, including their "no highways or night driving" rules. The other day I drove to the mall, we shopped and had lunch, and then I asked Matt to drive home. That tired me out enough that I needed a nap. One fun thing about my brain now is that when it gets overwhelmed, it tells me that it's a good idea to go to sleep, even when it's really not. Like the first time I drove, and 20 minutes into the 30 minute journey my brain said "Okay, I'm done. Let's close eyes now (or, close one and a half eyes, as the case may be.)."
Tonight I tried the ultimate challenge - driving in the dark, in the rain, to a place I hadn't been to before and had to follow directions while driving. I got a few miles in before flipping out and going back home. And I only lasted that long because for some time I was too scared to turn out of the lane to get to a parking lot in which to turn around. So, came home and cried about failing, and made plans to practice more night driving starting tomorrow. The worst part was having to call the person I was supposed to meet and tell her 1) I'm running late, and 2) I'm too scared and can't make it there anyway. The reason I was running late is because I spent a long time researching the route that did not involve highways/the beltway. Hey, at least I tried, right?
I'm thinking I might need an eye patch for the left eye while driving, at least at night. I see double of the lights, which may be due to eye drops, the rain, or just my eyes. I'm nervous about the effects on my peripheral vision, but I can turn my head if I need to. I can't unsee the double things.
Speaking of eye stuff, I also discovered something amazing this week - Refresh Celluvisc. This drop has saved me. It's a super-thick gel-like drop, so I can't see clearly out of that eye when I use it, BUT I only have to put it in every 2-4 hours, instead of every 15 minutes. And no more burning! Celluvisc plus the punctal plug have made the last week about a million times better than the week before. My eye might not get clawed out afterall.
Also cool, when I scratch in my left ear, if the room is quiet, I can hear it! I have no idea if this is "phantom hearing" or some sort of bone conduction or real hearing, but it's exciting to think that there could be a possibility, some years down the road, that I might hear out of that ear again! It would be pretty freaking amazing if my hearing AND face recovered, with the size of my tumor. Someone would have to do a case-study on me or something.
Since I didn't get to list it out for the doctor, here is my list of bothers currently:
-Facial paralysis, sub-bothers of this being: dry eye, numbness/tingling that sometimes hurts and sometimes feels like I'm covered in bugs, food falling out of the corner of my mouth, biting my lips by accident while eating, needing a straw to drink, and sillier things like not being able to blow a proper raspberry on my baby's belly
-Hearing loss - can't hear more than one thing at a time, can't locate things, crazy tinnitus ("white noise"), etc
-Left sided weakness
-Headaches
-Scalp pain
-Big ugly scar (okay, so that's a little trivial but I am a girl..)
-Balance issues
-Fatigue
-Emotional issues
-Forgetfulness / questionable cognitive difficulties
-Swallowing liquids when I don't use a straw. I feel like I'm choking.
I told Matt that I've lost my "Mommy Skills", like passing out snacks while walking through a crowded mall or while driving. I did, however, bathe the kids myself this week for the first time since surgery.
In PT we're working on my stamina along with balance and ability to walk and do something else at the same time. The goal is to get me back to working 12 hour shifts without my brain giving up halfway through and telling me to go to sleep. I've also been working the Wii-Fit every day. I'm pretty good at the boxing, but pretty bad at the balancing.
I'm going to get a new hairdo Saturday, so maybe that'll improve my self esteem / general mood a bit, because frankly it's been pretty bad lately.
Wednesday, November 4, 2009
Six Weeks Post-Op
Isn't six weeks supposed to be some magic time when I'm just healed?
Let's see...
I had the stitches removed from my eyelid. It looks great and my left eye now almost closes all the way. The bad news is, it still doesn't really blink, and doesn't make tears, so for the last week it's been hurting, burning, and feeling like it's full of glass and sand. Drops help for about 5 minutes at most. Ointment makes it feel sticky and burny. Sleeping works pretty well (yey for eyes closed!), but isn't always a viable option. Its horribleness is keeping me from things like staying at friend's Halloween parties because of lack of eyedrop coverage. It also costs about $20/week or more in products to keep my eye somewhat happy.
I saw my favorite Dr, my corneal specialist Dr L, about it today. He gave me a new batch of drops to try (don't I look like a typical 24 year old as I clutch my purse, bursting with eye drop samples, in front of me with two hands as I walk / stumble down an office hallway?). He also put a punctal plug in my lower eye lid. What this does is block the main "drain" of the eye, so any wetness that gets in there, whether by drops or by my eye's own volition (please start working, please!), will stay in longer. Hopefully this means at least going back down to drops hourly rather than every 15 minutes, with 10 minutes of wimpering in between.
Friday I see Dr T, the neurosurgeon, for my postop appointment. I'm assuming he'll clear me of most of my restrictions (including, but not limited to, driving, lifting more than 5#, and bending down to reach things..). We'll see, though! I'll have to make up my question list of things to ask.. like "How long is my face going to be like this?" And "what's the deal with this moving during surgery thing the nurse told me about?" And "What're the chances that this thing is coming back?"
I'm no longer gauranteed a constant mild headache all day, but instead now have stronger headaches more days than not. Horray...
A lot of the "adventure" in my days lately, aside from the kids, is PT and OT. I've been going to PT three times a week for a few weeks now, and had my second official OT appointment today, after my initial eval recommendation for two time a week for four weeks.
In PT I've mostly been working on balance things / vestibular rehab. For example, my session on Monday, which is the most recent and therefore the most advanced, included walking backwards on the treadmill for five minutes, going outside to side-skip across the lawn and walk while tossing a ball back and forth, and going into the dark to try to stand on a Bosu while tracking a laser light with my head. I'm advancing pretty well- well enough even that Sandra (my awesome PT) moved me down to two times a week therapy. They consider me "high functioning". I still can't do the stupid tandem walking (like walking on a balance beam.. I used to do cartwheels off the balance beam back in the day..). Also, I can't walk and talk at the same time. Okay, well I sort of can, but last week Sandra told me I needed to just walk across the gym (easy enough) and tell her all the vegetables I could think of (easy too!). I thought it wouldn't be too bad and immediately thought of a ton of veggies I could list, but then the weirdest thing happened where I started to walk and *poof* I could not think of a thing. Walking upright and straight is such a conscious effort that I can't use mental energy for anything else while walking.
I also need to work on my strength in the left side. I still have to concisouly work to keep that left leg from dragging, especially when it's getting tired. I have a feeling Sandra's going to kick my butt in sessions once we get the okay from Dr T to do so. Oh man.
In OT, we're working on left arm strength/endurance (by pedaling an arm bike), and left hand fine motor control. I do a lot of kid-like things like silly-putty (I'm sorry, I mean thera-putty), and stringing beads. Thank goodness for being right handed so I don't need to do *all* of preschool and kindergarten over again - I can still write about as well as I could before, which isn't saying much but it gets the job done. I also asked about perception tasks since I noticed the few times we've gone out shopping I pushed the cart into things (well, knicked the corners), and seem to have trouble filling containers, like the one time I continued to pour milk until it came out the top of the cup. The first OT I saw also said she would try to get some supplies off the nursing units there so we could practice work things that involve two hands. The good news is typing counts as doing my "therapy homework", so I'm working right now! (And my typing has improved drastically from where it started post-op, but isn't quite up to snuff.)
I need to decide what to do with my hair. I've been wearing scarves or bandanas whenever I go out for the last six weeks. The spot that was shaved by Dr T, around the scar, is about1/4" long, the sides of the mohawk we shaved are about 1", and the mohawk top is about 3.5". So as far as I can see it, my choices are to trim the sides and top but continue with the mohawk, which will expose the nasty scar for longer, or get an overall super short cut, which will eventually grow out to cover the scar but be really short in the meantime. I don't know..
The biggest problem I've been having lately is that of frustration. Looking back over the last six weeks, I can see how far I've come, but I also still see the long road in front of me. And I feel like it's only going to get harder as people become less patient with me and the progress is less evident.
Of course going from not walking to walking through Target again is awesome, but no one, myself included sometimes, can see how I'm struggling to walk straight, keep aware of my surroundings, identify the location of sounds... normal things we take for granted. I get frustrated when I try to drink without a straw and get my shirt all wet and/or choke, frustrated when my eye feels like it's on fire and there seems to be nothing I can do, and frustrated when I just want to eat my pizza but my lip gets in the way and I end up chewing a huge blood-blister in it by the end of the meal.
Who would have thought it would require so much patience to learn the art of being patient?
*Edit to Add - I forgot the best news of all. Thanks to a few days of not eating, and a general post-op disinterest in food, I've lost about 11#. (Of course if you subtract out the 10# I gained in stress-eating before surgery...)
Let's see...
I had the stitches removed from my eyelid. It looks great and my left eye now almost closes all the way. The bad news is, it still doesn't really blink, and doesn't make tears, so for the last week it's been hurting, burning, and feeling like it's full of glass and sand. Drops help for about 5 minutes at most. Ointment makes it feel sticky and burny. Sleeping works pretty well (yey for eyes closed!), but isn't always a viable option. Its horribleness is keeping me from things like staying at friend's Halloween parties because of lack of eyedrop coverage. It also costs about $20/week or more in products to keep my eye somewhat happy.
I saw my favorite Dr, my corneal specialist Dr L, about it today. He gave me a new batch of drops to try (don't I look like a typical 24 year old as I clutch my purse, bursting with eye drop samples, in front of me with two hands as I walk / stumble down an office hallway?). He also put a punctal plug in my lower eye lid. What this does is block the main "drain" of the eye, so any wetness that gets in there, whether by drops or by my eye's own volition (please start working, please!), will stay in longer. Hopefully this means at least going back down to drops hourly rather than every 15 minutes, with 10 minutes of wimpering in between.
Friday I see Dr T, the neurosurgeon, for my postop appointment. I'm assuming he'll clear me of most of my restrictions (including, but not limited to, driving, lifting more than 5#, and bending down to reach things..). We'll see, though! I'll have to make up my question list of things to ask.. like "How long is my face going to be like this?" And "what's the deal with this moving during surgery thing the nurse told me about?" And "What're the chances that this thing is coming back?"
I'm no longer gauranteed a constant mild headache all day, but instead now have stronger headaches more days than not. Horray...
A lot of the "adventure" in my days lately, aside from the kids, is PT and OT. I've been going to PT three times a week for a few weeks now, and had my second official OT appointment today, after my initial eval recommendation for two time a week for four weeks.
In PT I've mostly been working on balance things / vestibular rehab. For example, my session on Monday, which is the most recent and therefore the most advanced, included walking backwards on the treadmill for five minutes, going outside to side-skip across the lawn and walk while tossing a ball back and forth, and going into the dark to try to stand on a Bosu while tracking a laser light with my head. I'm advancing pretty well- well enough even that Sandra (my awesome PT) moved me down to two times a week therapy. They consider me "high functioning". I still can't do the stupid tandem walking (like walking on a balance beam.. I used to do cartwheels off the balance beam back in the day..). Also, I can't walk and talk at the same time. Okay, well I sort of can, but last week Sandra told me I needed to just walk across the gym (easy enough) and tell her all the vegetables I could think of (easy too!). I thought it wouldn't be too bad and immediately thought of a ton of veggies I could list, but then the weirdest thing happened where I started to walk and *poof* I could not think of a thing. Walking upright and straight is such a conscious effort that I can't use mental energy for anything else while walking.
I also need to work on my strength in the left side. I still have to concisouly work to keep that left leg from dragging, especially when it's getting tired. I have a feeling Sandra's going to kick my butt in sessions once we get the okay from Dr T to do so. Oh man.
In OT, we're working on left arm strength/endurance (by pedaling an arm bike), and left hand fine motor control. I do a lot of kid-like things like silly-putty (I'm sorry, I mean thera-putty), and stringing beads. Thank goodness for being right handed so I don't need to do *all* of preschool and kindergarten over again - I can still write about as well as I could before, which isn't saying much but it gets the job done. I also asked about perception tasks since I noticed the few times we've gone out shopping I pushed the cart into things (well, knicked the corners), and seem to have trouble filling containers, like the one time I continued to pour milk until it came out the top of the cup. The first OT I saw also said she would try to get some supplies off the nursing units there so we could practice work things that involve two hands. The good news is typing counts as doing my "therapy homework", so I'm working right now! (And my typing has improved drastically from where it started post-op, but isn't quite up to snuff.)
I need to decide what to do with my hair. I've been wearing scarves or bandanas whenever I go out for the last six weeks. The spot that was shaved by Dr T, around the scar, is about1/4" long, the sides of the mohawk we shaved are about 1", and the mohawk top is about 3.5". So as far as I can see it, my choices are to trim the sides and top but continue with the mohawk, which will expose the nasty scar for longer, or get an overall super short cut, which will eventually grow out to cover the scar but be really short in the meantime. I don't know..
The biggest problem I've been having lately is that of frustration. Looking back over the last six weeks, I can see how far I've come, but I also still see the long road in front of me. And I feel like it's only going to get harder as people become less patient with me and the progress is less evident.
Of course going from not walking to walking through Target again is awesome, but no one, myself included sometimes, can see how I'm struggling to walk straight, keep aware of my surroundings, identify the location of sounds... normal things we take for granted. I get frustrated when I try to drink without a straw and get my shirt all wet and/or choke, frustrated when my eye feels like it's on fire and there seems to be nothing I can do, and frustrated when I just want to eat my pizza but my lip gets in the way and I end up chewing a huge blood-blister in it by the end of the meal.
Who would have thought it would require so much patience to learn the art of being patient?
*Edit to Add - I forgot the best news of all. Thanks to a few days of not eating, and a general post-op disinterest in food, I've lost about 11#. (Of course if you subtract out the 10# I gained in stress-eating before surgery...)
Tuesday, November 3, 2009
6 Weeks Post-Op (Halloween) Pictures
Watch out, brain tumor patient with knife in hand..
Last year I carved an elaborate pirate ship. This year, this was the best I could do (Benjamin's pumpkin).
And since my face might not be paralyzed next year at this time (*fingers crossed*), gotta take advantage and be Two-Face this year.
Thursday, October 29, 2009
Five Weeks Post-Op
I guess my standard is to be two days late on updates.
I think the biggest news of the last week is I had my gold weight surgery on friday. Basically, I went in, they took me back to preop to do a set of vitals and stick a grounding pad on my leg, they put these sticky drops in my eyes (they said it was to numb them so it wouldn't sting if/when they get betadine in them), and took me back into a little O.R. It wasn't in a hospital, but in a special eye surgery center that's in a eye doctor's office. Pretty cool.
[Surgery details that could potentially be gross in the next few paragraphs. You've been warned...]
So anyway, I was the last case of the day. The nurse put on a BP cuff and pulse ox and asked me if I needed/wanted an oxygen mask (they knew I'm a nurse). I was like "uh, I don't know. Do I need one?" They put a drape below my eyes that covered my mouth and all, and one above my eyes I think. Suddenly the doctor started scrubbing all around with betadine and I thought "Oh, I guess I'm supposed to close my eyes now." The bright OR lights were on, of course pointing right in my face/eyes on purpose, which is awesome when you can't close our eye all the way. And extra creepy when they open your eyelid up so the light gets oddly brighter as the layer between you and it is thinner.
Like the betadine, the local anesthetic injections were kind of out of no-where. Like, "Hey, you're poking my eyelid with a needle now! Okay!" I heard and smelled the cautery cutting my eyelid, but luckily didn't feel a thing. It was a little uncomfortable when he was putting the weight in because I guess they kind of have to make a pocket for it. And he had to do a little more cutting towards the end and I said "Uh.. I kind of feel that..", very nervously because it hurt some, but I don't know that they heard me. Anyway, I heard him ask for a "six O" (6.0 ... a suture) and I thought both "Woohoo, almost done!" and "Wow, that's a tiny suture." Then the doctor was wheeling me out and explaning post-op care and that was that. There was some conversation in the OR but I didn't participate much because 1) There was a radio on and apparently, with only one hearing ear, I can't understand people talking when there is background noise, and 2) I was being operated on. Keeping my eye somewhat closed takes a lot of effort and thought, and I could feel it trying to open while he was working on it.
[Gross stuff over.]
The "operation" (it seems weird to call a little outpatient thing under local an "operation" after brain surgery...) was pretty successful, but we won't know the full effects until the swelling is gone. I can almost close it all the way, but still not completely. The first night, when the lidocaine wore off, I whimpered a lot. And had frozen vegetables in sandwich bags on and off every 20 minutes, for hours. And took an oxycodone before bed. And said if I ever got another tumor I would just let it kill me, haha. The next day postop it got somewhat swollen but nothing horrific and now with my eyes open it really looks pretty normal. The incision is in the natural crease of my eyelid so once it's healed it'll be like nothing. I go monday to get the stitches out.
I did end up going in to get it looked at last monday because when the nurse called to check on me I told her how it feels like there's something in my eye all the time, and apparently that's not completely normal. I figured it was just from like the curvature of my eylid being different or something, but the doctor wanted to check it out and make sure it wasn't a stitch poking me. I was fine with that. So he fit me in between appointments just a hour and a half after a spoke to the nurse. Turns out I was right and everything looked fine.
For right now, no more plastic wrap on the eye. But, I'm not sure if I mentioned before that the left eye also doesn't produce tears anymore (so weird to only cry out of one side...), so I still have to put drops in frequently and ointment at night. That eye pretty much feels irritated and nasty all the time no matter what. But apparently as of monday my cornea looked good, so.. oh well I guess.
Weird thing, it seems I'm starting to get some feeling in that eye, but the feeling on the bottom half of my face is getting worse. Maybe the facial nerve gets worse before it gets better? I can still feel if I touch my face on the left (less than I do on the right but it's there) but if it's below my cheekbone, and especially on my upper lip, it feels weird and tingly almost like when your arm is "asleep". The inside of my mouth is the same on the left, and the end of my tongue still feels like it's been burnt.
Having to remember to bring a straw everywhere to drink really stinks.
Overall the course of the week, aside from the eye stuff, has been to get used to the flow of things at home. I've been trying to get more involved with doing stuff around the house and with my kids, as I can and within my post-op limitations. Sometimes I forget I'm not supposed to bend down and reach to get something off the floor and pay for it with a headache. But slowly I can do more around here. I warned the neighbor's about my hearing loss since when they call out to me it takes me awhile to locate them, and I didn't want them to think I was rude if I didn't return a "Hello" I never heard. Some people with SSD (single sided deafness) may feel weird about it, but it doesn't bother me for others to know. Then they are less likely to talk to me in my left ear and get a lot of "what?" from me. I don't think I would ever get something like a BAHA hearing device because it involves another surgery, and I'm hoping so hard I don't need anymore (though I'm pretty sure the eye is not done...).
Lasty, not so much because I'm out of things to say so much as The Office is on, I read this really good article on the Vestibular System (part of your balance system, including the most messed up nerve on me). Here's a snipit that talks about some non-balance things that can be effected when it's messed up, and describes some of the feelings pretty well. (Italics done by me.)
....
http://www.hearinglosshelp.com/articles/balancesystem.htm
Unlikely as it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times.
I think the biggest news of the last week is I had my gold weight surgery on friday. Basically, I went in, they took me back to preop to do a set of vitals and stick a grounding pad on my leg, they put these sticky drops in my eyes (they said it was to numb them so it wouldn't sting if/when they get betadine in them), and took me back into a little O.R. It wasn't in a hospital, but in a special eye surgery center that's in a eye doctor's office. Pretty cool.
[Surgery details that could potentially be gross in the next few paragraphs. You've been warned...]
So anyway, I was the last case of the day. The nurse put on a BP cuff and pulse ox and asked me if I needed/wanted an oxygen mask (they knew I'm a nurse). I was like "uh, I don't know. Do I need one?" They put a drape below my eyes that covered my mouth and all, and one above my eyes I think. Suddenly the doctor started scrubbing all around with betadine and I thought "Oh, I guess I'm supposed to close my eyes now." The bright OR lights were on, of course pointing right in my face/eyes on purpose, which is awesome when you can't close our eye all the way. And extra creepy when they open your eyelid up so the light gets oddly brighter as the layer between you and it is thinner.
Like the betadine, the local anesthetic injections were kind of out of no-where. Like, "Hey, you're poking my eyelid with a needle now! Okay!" I heard and smelled the cautery cutting my eyelid, but luckily didn't feel a thing. It was a little uncomfortable when he was putting the weight in because I guess they kind of have to make a pocket for it. And he had to do a little more cutting towards the end and I said "Uh.. I kind of feel that..", very nervously because it hurt some, but I don't know that they heard me. Anyway, I heard him ask for a "six O" (6.0 ... a suture) and I thought both "Woohoo, almost done!" and "Wow, that's a tiny suture." Then the doctor was wheeling me out and explaning post-op care and that was that. There was some conversation in the OR but I didn't participate much because 1) There was a radio on and apparently, with only one hearing ear, I can't understand people talking when there is background noise, and 2) I was being operated on. Keeping my eye somewhat closed takes a lot of effort and thought, and I could feel it trying to open while he was working on it.
[Gross stuff over.]
The "operation" (it seems weird to call a little outpatient thing under local an "operation" after brain surgery...) was pretty successful, but we won't know the full effects until the swelling is gone. I can almost close it all the way, but still not completely. The first night, when the lidocaine wore off, I whimpered a lot. And had frozen vegetables in sandwich bags on and off every 20 minutes, for hours. And took an oxycodone before bed. And said if I ever got another tumor I would just let it kill me, haha. The next day postop it got somewhat swollen but nothing horrific and now with my eyes open it really looks pretty normal. The incision is in the natural crease of my eyelid so once it's healed it'll be like nothing. I go monday to get the stitches out.
I did end up going in to get it looked at last monday because when the nurse called to check on me I told her how it feels like there's something in my eye all the time, and apparently that's not completely normal. I figured it was just from like the curvature of my eylid being different or something, but the doctor wanted to check it out and make sure it wasn't a stitch poking me. I was fine with that. So he fit me in between appointments just a hour and a half after a spoke to the nurse. Turns out I was right and everything looked fine.
For right now, no more plastic wrap on the eye. But, I'm not sure if I mentioned before that the left eye also doesn't produce tears anymore (so weird to only cry out of one side...), so I still have to put drops in frequently and ointment at night. That eye pretty much feels irritated and nasty all the time no matter what. But apparently as of monday my cornea looked good, so.. oh well I guess.
Weird thing, it seems I'm starting to get some feeling in that eye, but the feeling on the bottom half of my face is getting worse. Maybe the facial nerve gets worse before it gets better? I can still feel if I touch my face on the left (less than I do on the right but it's there) but if it's below my cheekbone, and especially on my upper lip, it feels weird and tingly almost like when your arm is "asleep". The inside of my mouth is the same on the left, and the end of my tongue still feels like it's been burnt.
Having to remember to bring a straw everywhere to drink really stinks.
Overall the course of the week, aside from the eye stuff, has been to get used to the flow of things at home. I've been trying to get more involved with doing stuff around the house and with my kids, as I can and within my post-op limitations. Sometimes I forget I'm not supposed to bend down and reach to get something off the floor and pay for it with a headache. But slowly I can do more around here. I warned the neighbor's about my hearing loss since when they call out to me it takes me awhile to locate them, and I didn't want them to think I was rude if I didn't return a "Hello" I never heard. Some people with SSD (single sided deafness) may feel weird about it, but it doesn't bother me for others to know. Then they are less likely to talk to me in my left ear and get a lot of "what?" from me. I don't think I would ever get something like a BAHA hearing device because it involves another surgery, and I'm hoping so hard I don't need anymore (though I'm pretty sure the eye is not done...).
Lasty, not so much because I'm out of things to say so much as The Office is on, I read this really good article on the Vestibular System (part of your balance system, including the most messed up nerve on me). Here's a snipit that talks about some non-balance things that can be effected when it's messed up, and describes some of the feelings pretty well. (Italics done by me.)
....
http://www.hearinglosshelp.com/articles/balancesystem.htm
Unlikely as it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times.
You may also experience fatigue because keeping your balance is now no longer a subconscious event, but something that you must consciously work hard to maintain. All this work makes you tired!
Vestibular damage may also give rise to muscular aches and pains. This is because when your vestibulo-spinal reflex no longer works automatically, you have to consciously control your balance by making your muscles rigid and less relaxed as you strain to keep your balance. In addition, you may get headaches and a stiff/sore neck from trying to hold your head absolutely still so you won't feel dizzy or nauseous.
Finally, damage to your vestibular system can include emotional problems such as anxiety, frustration, anger and depression. Your feelings of self-confidence and self-esteem may plummet. You may feel vaguely uneasy. You may feel that something is wrong or unreal without knowing why.
Saturday, October 24, 2009
The One Month Pictures
We found a cord for the camera, so here are the pictures I have from immediately pre-op to one month post-op.
Brodie and me the night before surgery.
My last bedtime story with Benjamin for about a month.
9/22 - Not quite 5am, in the car on the way to the hospital.
One month post-op face.... "regular" face, trying to close eye (yeeeaahh), and trying to smile.
With the plastic wrap "moisture chamber".
The lesson being - love your face. Forget about pimples and wrinkles and freckles, etc. It could be a lot worse very easily.
Brodie and me the night before surgery.
My last bedtime story with Benjamin for about a month.
9/22 - Not quite 5am, in the car on the way to the hospital.One month post-op face.... "regular" face, trying to close eye (yeeeaahh), and trying to smile.
With the plastic wrap "moisture chamber".
The lesson being - love your face. Forget about pimples and wrinkles and freckles, etc. It could be a lot worse very easily.
Thursday, October 22, 2009
The One Month Mark!
One month post-op today!
I took pictures but we have lost the camera-to-computer cord so you'll just have to wait to see how messed up my face is. Ooooohh..
Some updates from the last week-
-Been sleeping laying down consistently. Whether I'm up sitting in a chair or laying down I wake up nauseated, but hopefully that'll one day pass. If I can do it nine months in a row twice in my life, I can do it again now. No vomiting, so that's good I guess.
-We came home!
We've been out of our house since the second week of July, when we temporarily moved into Matt's parents house while his dad was home on hospice. Since then, we've tried to come home twice (before my surgery), but both times terrible things happened to people in our family, the first being finding my tumor. We felt a little cursed and it worked out best for us to stay there until after surgery and some recovery for me at my parent's house anyway. I haven't heard of any bad things happening this time, so I think we're back to stay. Big thanks to our good friend Jeremy, my brother Sean, and to our neighbors, for looking out for the house and cats!!
It's been two days home and the routine has pretty much been - Matt gets up with the kids, I wake up sometime later, Matt gets the kids ready while I get myself ready, we go out somewhere (Benjamin's last tennis lesson yesterday, the pumpkin patch today), come back and have lunch, then nap time for me and Brodie, get up and go to PT, come back and eat dinner, then put the kids to bed, TV, bed, and repeat. So pretty much I'm useless. But I can shower without supervision now, so go me! I'm not quite a third child anymore.
-My head and neck hurt most of the time, but not so much that it's stopping me from much. It's the fatigue (very normal, from what I understand), and restrictions, and inability to see out of my left eye that are keeping me from things.
-PT says I'm doing great! I don't feel so great, but I guess compared to a month ago when I couldn't walk and support my own weight at the same time, it's a huge improvement. I'm doing well enough that we may get to go down to twice a week from three times. I had something weird happen where I called Dr T to get the prescription for occupational therapy (I was told at discharge I needed it. And I think I do, too.), and his secretary called and said "He said you don't need [OT]." Great. I mentioned it to my PT and she ran some tests and talked with OT and they both thought I could benefit from at least an eval. My left hand still really stinks at doing things and shakes weirdly. I told my PT and OT "I know they had to take a little piece of my cerebellum but they said I 'wouldn't miss it'." They were both like :O "ooookaaaay."
The one test they had me do was the "Nine Hole Peg Test"
(pic at right), where you are timed as you take pegs out of the bowl and put them into nine holes, then take them back out again. You get to do it once with your "good" hand (my right, thank goodness since I'm right handed) and twice with your "affected" hand (my left), and then your times are compared. My left hand shook and dropped pegs and was significantly slower than the right, though it did improve between the first and second times, so I guess it can learn. They also did a grip strength test and again the left was significantly worse. So my PT called Dr T and faxed him some of my paperwork and I found out today he approved an OT consult! Yey! It happens next friday. I also got some "homework" to do with my left hand. Typing counts!
-My left eye still bothers me. Gold weight surgery tomorrow. I'd be lying if I said I wasn't nervous. Eye stuff is gross. And I think I'm going to need a benzo before they come at my eye with the lidocaine needle. Yikes. It's all done under local, so I get to eat a "light" lunch and breakfast. I looked at some pictures of the proceedure, which I wish I hadn't. I also just tonight read a bad story of a man whose weight shifted under his eyelid and after just two weeks it had to be removed because it was coming through his eyelid. Yuck! I'm hoping youth is on my side and I'll have nice thick skin good for implanting metals under. And I'm hoping to loose this plastic wrap. It feels so good when I take it off to change it or take a shower.
-My right hip still hurts, especially while I'm not comfortable laying on my incision yet, but loves being back on our tempurpedic mattress. I also STILL have bruises on my stomach from my twice daily heparin injections while in the hospital.
-I joined the ANA (Acoustic Neuroma Association) online forums, which are like an online support group. It really helps to read that other people have experienced the same results of treatment and that if I can just be patient (which I am NOT known for) things will get better. Hopefully I'll even smile on both sides one day. (Or, as Benjamin says, my "teeth will be fixed".)
-I have a problem with eating where I bite my lips on the left as I take bites of things because I can't move them out of the way of my teeth. It's really annoying.
-I somewhat successfully baked a "Happy One Month PostOp" cake. I didn't have the proper pan so it's kind of brown on top, uncooked on the bottom. The thing must a million calories - 3 cups of sugar, 3 sticks of butter, 6 eggs, a whole package of cream cheese... mmmm.
Pictures to come when we find that cable!
I took pictures but we have lost the camera-to-computer cord so you'll just have to wait to see how messed up my face is. Ooooohh..
Some updates from the last week-
-Been sleeping laying down consistently. Whether I'm up sitting in a chair or laying down I wake up nauseated, but hopefully that'll one day pass. If I can do it nine months in a row twice in my life, I can do it again now. No vomiting, so that's good I guess.
-We came home!
We've been out of our house since the second week of July, when we temporarily moved into Matt's parents house while his dad was home on hospice. Since then, we've tried to come home twice (before my surgery), but both times terrible things happened to people in our family, the first being finding my tumor. We felt a little cursed and it worked out best for us to stay there until after surgery and some recovery for me at my parent's house anyway. I haven't heard of any bad things happening this time, so I think we're back to stay. Big thanks to our good friend Jeremy, my brother Sean, and to our neighbors, for looking out for the house and cats!!
It's been two days home and the routine has pretty much been - Matt gets up with the kids, I wake up sometime later, Matt gets the kids ready while I get myself ready, we go out somewhere (Benjamin's last tennis lesson yesterday, the pumpkin patch today), come back and have lunch, then nap time for me and Brodie, get up and go to PT, come back and eat dinner, then put the kids to bed, TV, bed, and repeat. So pretty much I'm useless. But I can shower without supervision now, so go me! I'm not quite a third child anymore.
-My head and neck hurt most of the time, but not so much that it's stopping me from much. It's the fatigue (very normal, from what I understand), and restrictions, and inability to see out of my left eye that are keeping me from things.
-PT says I'm doing great! I don't feel so great, but I guess compared to a month ago when I couldn't walk and support my own weight at the same time, it's a huge improvement. I'm doing well enough that we may get to go down to twice a week from three times. I had something weird happen where I called Dr T to get the prescription for occupational therapy (I was told at discharge I needed it. And I think I do, too.), and his secretary called and said "He said you don't need [OT]." Great. I mentioned it to my PT and she ran some tests and talked with OT and they both thought I could benefit from at least an eval. My left hand still really stinks at doing things and shakes weirdly. I told my PT and OT "I know they had to take a little piece of my cerebellum but they said I 'wouldn't miss it'." They were both like :O "ooookaaaay."
The one test they had me do was the "Nine Hole Peg Test"
(pic at right), where you are timed as you take pegs out of the bowl and put them into nine holes, then take them back out again. You get to do it once with your "good" hand (my right, thank goodness since I'm right handed) and twice with your "affected" hand (my left), and then your times are compared. My left hand shook and dropped pegs and was significantly slower than the right, though it did improve between the first and second times, so I guess it can learn. They also did a grip strength test and again the left was significantly worse. So my PT called Dr T and faxed him some of my paperwork and I found out today he approved an OT consult! Yey! It happens next friday. I also got some "homework" to do with my left hand. Typing counts!-My left eye still bothers me. Gold weight surgery tomorrow. I'd be lying if I said I wasn't nervous. Eye stuff is gross. And I think I'm going to need a benzo before they come at my eye with the lidocaine needle. Yikes. It's all done under local, so I get to eat a "light" lunch and breakfast. I looked at some pictures of the proceedure, which I wish I hadn't. I also just tonight read a bad story of a man whose weight shifted under his eyelid and after just two weeks it had to be removed because it was coming through his eyelid. Yuck! I'm hoping youth is on my side and I'll have nice thick skin good for implanting metals under. And I'm hoping to loose this plastic wrap. It feels so good when I take it off to change it or take a shower.
-My right hip still hurts, especially while I'm not comfortable laying on my incision yet, but loves being back on our tempurpedic mattress. I also STILL have bruises on my stomach from my twice daily heparin injections while in the hospital.
-I joined the ANA (Acoustic Neuroma Association) online forums, which are like an online support group. It really helps to read that other people have experienced the same results of treatment and that if I can just be patient (which I am NOT known for) things will get better. Hopefully I'll even smile on both sides one day. (Or, as Benjamin says, my "teeth will be fixed".)
-I have a problem with eating where I bite my lips on the left as I take bites of things because I can't move them out of the way of my teeth. It's really annoying.
-I somewhat successfully baked a "Happy One Month PostOp" cake. I didn't have the proper pan so it's kind of brown on top, uncooked on the bottom. The thing must a million calories - 3 cups of sugar, 3 sticks of butter, 6 eggs, a whole package of cream cheese... mmmm.
Pictures to come when we find that cable!
Sunday, October 18, 2009
The First Mile
Just wanted to say that I walked a mile today.
Three weeks ago it was tough to get from the hospital bed to the bathroom a few feet away.
Things are looking up! Maybe it won't be so crazy to make my post-op goal learning to roller skate well enough to try out for a derby team one day.
Three weeks ago it was tough to get from the hospital bed to the bathroom a few feet away.
Things are looking up! Maybe it won't be so crazy to make my post-op goal learning to roller skate well enough to try out for a derby team one day.
Saturday, October 17, 2009
The NCCU - In Nicole's Words (Editted)
Going back to 3.5 weeks ago, here's what I remember of my NCCU stay (which is not much and fading fast. Should have typed this out awhile ago)...
The first night was the worst. Looking back, I feel really bad for my first nurse, Kevin, who had to admit me with all my drama at the end of shift. Sorry! Been there, done that, and I know it's no fun.
(Edit to add..) From the moment I woke up from surgery, I was angry. I felt like I had just gone to sleep, and now I had to fend for myself again. I was tired, but scared that if I fell asleep I would aspirate my saliva. I didn't want to have to breathe for myself or try (in vain) to swallow. I was mad. (/edit)
I think my first memory of my second nurse (first night shift), was him coming in to put a nasal cannula on me while I slept. (Edit - I take that back. The nasal cannula was the second night and it was a female nurse. I must have had a mask or something the first night.) I may have been vaguely aware of an alarming when I drifted off to sleep, but not enough to wake me and make me take a deep breath I guess! (Edit - Again, this was the second night when I was desatting while sleeping I think.)
My next memory of him (aside from his Navy ID badge lanyard) was when I was getting potassium and my blood pressure cuff went off and I woke up screaming. I'm still a little angry about this.
The things I had on me at this point (that I was aware of anyway) were a #16 IV in my left hand (which I still have a mark on my hand from.. all this time later), a #18 IV in my right hand, continuous pulse ox on my right index finger, heart monitor, BP cuff on my left arm that went off hourly, and an A line in my right wrist. What happened, at least what I think I figured out, was apparently my A line was not working well to monitor my blood pressure, so they were using the cuff to double check it. I was on pressure meds the first night because my pressure had been low throughout surgery and post op (and I heard I'd had a huge urine output so they also pumped up the IV fluids and that's where I got the idea of fluid overload when I was feeling like drowning), so it was really important they knew what my pressure was.
So anyway, I was also on potassium IV, which burns like a mother. I may have slept through it if all had gone right, except it was going through the huge IV in my left hand, and when the BP cuff on that arm went off and occluded everything, the potassium just sat in my hand/forearm, and woke me up screaming. I almost cursed him out for putting a BP cuff on an arm with an IV (you're not supposed to do that for that very reason), until I realized they *both* had IVs, so there was no other arm to put it on. The poor nurse (who was a good nurse, don't get me wrong. I just happened to not be in a good place that night) then tired to put the potassium in through the IV on the right, but I said I "didn't think I could take it". He must have slowed the rate down or something because then I didn't feel it and must have gone back to sleep. Or maybe he gave me some drugs and I slept, I don't know.
The next thing I remember, I must have yelled out that I was going to throw up or something, because suddenly my nurse was standing there with a bucket and I was heaving. He was telling me it was okay and that there probably was nothing there to come up anyway, then suddenly what must have been a liter or two of green nastiness came up. The nurse was like "Oorrr, you're full of bile!" Haha. That poor guy. My first post op night sucked. One good thing about throwing up, is I think that's when I got my new most treasured thing - my yankauer suction. When you feel like you can't control your spit, it's so nice to have your own "Mister Thirsty". I think there is a post op photo my mom posted of me with it.
That nurse worked really hard and had me weaned from both O2 and my BP meds that night. (Edit to add..) When he came in in the morning for one of the last checks on me I remember telling him that I had a dream that they intubated me again. He said "Aw, no we wouldn't do that to you." And I told him, very deadpan, "I wanted you to." I was still afraid of aspirating and angry, for some reason, that I had to work hard to breathe on my own again. (/edit)
The rest of my stay kind there kind of blends together. I remember a lot but not in any order.
I remember...
-chest x-rays the first and second mornings. The first one showed no improvement in my right lower lobe, which I would expect since I didn't get my incentive spirometer yet. I guess the second was better because I didn't get another one. (Edit to add..) I worked so hard on that spirometer, like a good little patient. It helped that there was nothing else to do. I had a nice routine of trying to clear my throat, suctioning with the yankauer, then doing 10 deep breaths on my spirometer. And then, probably, going to sleep for a quick nap because that was the extent of my energy.
-when PT came the first time and it took two PTs to get me out of bed and walk me down the hall. It was an Indian lady and a young guy (he was a PT student) with pretty blue eyes. I couldn't get my stupid left leg to walk right, and they asked me if I always walked pigeon toed, because I was then (I don't). They started me on my vestibular exercises, which involve holding a card with an X on it in front of you at arm's length and keeping eye focus on it while turning your head side to side, and then up and down. I could only do about 15 seconds before I felt like I was going to puke. The lady gave me a packet with exercises for home and asked me to read it over and I was like "yeah, okay", not really sure if I could read if I wanted to. I had Matt read it over when he came to visit. (/edit)
-discovering a painful pink spot on my right hip bone, probably from lying on it for 10 hours straight. I left it exposed to air and didn't let anything, even the call bell, touch it. I was so scared of an ulcer! Eventually a wound care nurse came to check it out and said not to worry since it was blanchable. It still hurts a little but it's not pink anymore.
-I hated that stupid foley catheter. I always felt like I had to pee. And when I mentioned that to one nurse, she recommended I "push it in a little more". I'm not a fan of UTIs, so I didn't like that advice. I was so happy to have that dumb thing out, even if the nurses weren't (it's easier to empty a foley then help someone out of bed every hour they think they have to pee).
-when my bed decided it was time for its maintenance and started to beep and wouldn't stop so they brought in another bed for me. I pushed up to kind of crab-crawl to the new bed and found myself swinging wildly, unable to really keep my balance or sence of spacial relations.
-when a nurse pulled my left hand IV and said "Oh that's why it hurts! They have a 16 gauge in this tiny hand!"
-Matt coming in to visit while a nurse was removing my A line, and me telling him to look away.
-another time Matt was there I was telling him about how I had overheard at some point (I think in that first wretched night when I thought I was dying) that I had gotten some extra anesthetic during the surgery because Dr T thought I was waking up. I was saying "I think it had something to do with my blood pressures or something" and the nurse said "Actually, it was because you started moving during the surgery." Awesome.
-being ticked off the first time my blood sugar was taken (because of being on high dose steriods for brain swelling) because the tech didn't wipe the first drop of blood away like you're supposed to. But then again of all the tons of times it was taken while I was there (they kept asking "Which finger?" like it mattered when they are all full of holes!) no one ever wiped that first drop away. I should write a letter to Hopkins to let them know.
-my nurse and the NP rolling me down to my MRI when transport was going to take too long. I think they hoped to get me transferred off the unit quickly, and for some reason the team decided I needed to have my follow up MRI before transfer (I'm not sure if that's standard or not but I got the impression they were just being extra careful with me since Dr T went out sick right after my surgery). Transferring from the bed to the MRI table was hard. I felt like I had no neck muscles and my head weighed 50lbs. I must have fallen asleep in the MRI (I was better medicated this time for sure, haha. I got IV pain meds right before we left the unit and I heard the NP ask the nurse to bring another dose with her just in case). I know I kept my eyes closed this time. When it was time to go back to the bed from the MRI table they lifted me on a sheet instead of having me transfer. I guess when they saw how little I am they decided it was easier for them to do it than me. After the results showed a fair bit of swelling and an "infarct", they decided to keep me in the NCCU. Of course, those are both normal for someone who just had brain surgery including part of their cerebellum removed (the "infarct"), so when Dr T came back in the next morning and read the MRI himself, he cleared me to go to the regular floor.
-Matt's dad's doctors, Dr Q (the neurosurgeon I originally saw) and Dr B coming in to check on me when they saw my name on the board. Dr B wasn't even sure we were related but saw the last name and figured, I guess, how many of us can there be? She asked if I was related to Matt's dad, and I said yes I'm his daughter in law, and she expressed her condolances and asked if there was anything she could do for me. It was very nice of them.
-the second morning (Thursday) the ENT team came in, they had me try to drink some water to test my swallow. After swallowing (or attempting to) they had me count to five. They thought my voice was too gurgly and decided speech language pathology needed to do a formal swallow test. I was pretty scared I wouldn't pass. When the SLP came, she had me start with some baby food apple sauce. I was able to eat it, so I got to move on to graham crackers iun tiny bites. I could eat that, too, so she declared me fit for a mechanical soft diet. Still, I was so happy to have my trusty suction at the ready, just in case I couldn't handle it. That fear of aspiration lasted a long time.
-one night a friend who works at Hopkins came up to visit me after her shift. I didn't want to keep my glasses on the unit with me, as I was afraid they'd get lost, so I couldn't see her. After saying hello I had to ask "Who is it I'm talking to?"
-Frank, the last day shift nurse I had, was so funny. One time I broke the "on/off" switch on my suction and he had to get me a new one. Another time, I decided to try to go from the toilet to the bed (approximately two steps) by myself. Both times he was like "Whoa, girlfriend!"
-and of course the frequent neuro checks. "Grab my fingers. Sqeeze. Push me out. Pull me in. ..."
-(Edit to add..) the wheelchair ride from the NCCU to the regular floor. My poor nurse had been working hard to get me transferred during the night shift and I had given up and fallen asleep. I felt bad because I knew my aunt, who was going to spend the night with me if I was able to get a private room, was waiting. When it was time we quickly gathered my little bit of things (and I had to say goodbye to my yankauer!), put the yellow bucket on my lap, and rolled down the hall. I was so dizzy and disoriented. That was the worst wheelchair ride ever. And I didn't have my glasses still so I couldn't see anything, either. I might as well have been on a loop-de-loop rollercoaster the way I felt, only it wasn't fun. In fact, I wonder if regular roller coasters will ever be fun to me again or if they will just be sickening. (/edit)
There's probably more but not that I can think of this second. I would love to get a copy of my medical record to see if it all sounds as eventful on paper as it is in my memory.
The first night was the worst. Looking back, I feel really bad for my first nurse, Kevin, who had to admit me with all my drama at the end of shift. Sorry! Been there, done that, and I know it's no fun.
(Edit to add..) From the moment I woke up from surgery, I was angry. I felt like I had just gone to sleep, and now I had to fend for myself again. I was tired, but scared that if I fell asleep I would aspirate my saliva. I didn't want to have to breathe for myself or try (in vain) to swallow. I was mad. (/edit)
I think my first memory of my second nurse (first night shift), was him coming in to put a nasal cannula on me while I slept. (Edit - I take that back. The nasal cannula was the second night and it was a female nurse. I must have had a mask or something the first night.) I may have been vaguely aware of an alarming when I drifted off to sleep, but not enough to wake me and make me take a deep breath I guess! (Edit - Again, this was the second night when I was desatting while sleeping I think.)
My next memory of him (aside from his Navy ID badge lanyard) was when I was getting potassium and my blood pressure cuff went off and I woke up screaming. I'm still a little angry about this.
The things I had on me at this point (that I was aware of anyway) were a #16 IV in my left hand (which I still have a mark on my hand from.. all this time later), a #18 IV in my right hand, continuous pulse ox on my right index finger, heart monitor, BP cuff on my left arm that went off hourly, and an A line in my right wrist. What happened, at least what I think I figured out, was apparently my A line was not working well to monitor my blood pressure, so they were using the cuff to double check it. I was on pressure meds the first night because my pressure had been low throughout surgery and post op (and I heard I'd had a huge urine output so they also pumped up the IV fluids and that's where I got the idea of fluid overload when I was feeling like drowning), so it was really important they knew what my pressure was.
So anyway, I was also on potassium IV, which burns like a mother. I may have slept through it if all had gone right, except it was going through the huge IV in my left hand, and when the BP cuff on that arm went off and occluded everything, the potassium just sat in my hand/forearm, and woke me up screaming. I almost cursed him out for putting a BP cuff on an arm with an IV (you're not supposed to do that for that very reason), until I realized they *both* had IVs, so there was no other arm to put it on. The poor nurse (who was a good nurse, don't get me wrong. I just happened to not be in a good place that night) then tired to put the potassium in through the IV on the right, but I said I "didn't think I could take it". He must have slowed the rate down or something because then I didn't feel it and must have gone back to sleep. Or maybe he gave me some drugs and I slept, I don't know.
The next thing I remember, I must have yelled out that I was going to throw up or something, because suddenly my nurse was standing there with a bucket and I was heaving. He was telling me it was okay and that there probably was nothing there to come up anyway, then suddenly what must have been a liter or two of green nastiness came up. The nurse was like "Oorrr, you're full of bile!" Haha. That poor guy. My first post op night sucked. One good thing about throwing up, is I think that's when I got my new most treasured thing - my yankauer suction. When you feel like you can't control your spit, it's so nice to have your own "Mister Thirsty". I think there is a post op photo my mom posted of me with it.
That nurse worked really hard and had me weaned from both O2 and my BP meds that night. (Edit to add..) When he came in in the morning for one of the last checks on me I remember telling him that I had a dream that they intubated me again. He said "Aw, no we wouldn't do that to you." And I told him, very deadpan, "I wanted you to." I was still afraid of aspirating and angry, for some reason, that I had to work hard to breathe on my own again. (/edit)
The rest of my stay kind there kind of blends together. I remember a lot but not in any order.
I remember...
-chest x-rays the first and second mornings. The first one showed no improvement in my right lower lobe, which I would expect since I didn't get my incentive spirometer yet. I guess the second was better because I didn't get another one. (Edit to add..) I worked so hard on that spirometer, like a good little patient. It helped that there was nothing else to do. I had a nice routine of trying to clear my throat, suctioning with the yankauer, then doing 10 deep breaths on my spirometer. And then, probably, going to sleep for a quick nap because that was the extent of my energy.
-when PT came the first time and it took two PTs to get me out of bed and walk me down the hall. It was an Indian lady and a young guy (he was a PT student) with pretty blue eyes. I couldn't get my stupid left leg to walk right, and they asked me if I always walked pigeon toed, because I was then (I don't). They started me on my vestibular exercises, which involve holding a card with an X on it in front of you at arm's length and keeping eye focus on it while turning your head side to side, and then up and down. I could only do about 15 seconds before I felt like I was going to puke. The lady gave me a packet with exercises for home and asked me to read it over and I was like "yeah, okay", not really sure if I could read if I wanted to. I had Matt read it over when he came to visit. (/edit)
-discovering a painful pink spot on my right hip bone, probably from lying on it for 10 hours straight. I left it exposed to air and didn't let anything, even the call bell, touch it. I was so scared of an ulcer! Eventually a wound care nurse came to check it out and said not to worry since it was blanchable. It still hurts a little but it's not pink anymore.
-I hated that stupid foley catheter. I always felt like I had to pee. And when I mentioned that to one nurse, she recommended I "push it in a little more". I'm not a fan of UTIs, so I didn't like that advice. I was so happy to have that dumb thing out, even if the nurses weren't (it's easier to empty a foley then help someone out of bed every hour they think they have to pee).
-when my bed decided it was time for its maintenance and started to beep and wouldn't stop so they brought in another bed for me. I pushed up to kind of crab-crawl to the new bed and found myself swinging wildly, unable to really keep my balance or sence of spacial relations.
-when a nurse pulled my left hand IV and said "Oh that's why it hurts! They have a 16 gauge in this tiny hand!"
-Matt coming in to visit while a nurse was removing my A line, and me telling him to look away.
-another time Matt was there I was telling him about how I had overheard at some point (I think in that first wretched night when I thought I was dying) that I had gotten some extra anesthetic during the surgery because Dr T thought I was waking up. I was saying "I think it had something to do with my blood pressures or something" and the nurse said "Actually, it was because you started moving during the surgery." Awesome.
-being ticked off the first time my blood sugar was taken (because of being on high dose steriods for brain swelling) because the tech didn't wipe the first drop of blood away like you're supposed to. But then again of all the tons of times it was taken while I was there (they kept asking "Which finger?" like it mattered when they are all full of holes!) no one ever wiped that first drop away. I should write a letter to Hopkins to let them know.
-my nurse and the NP rolling me down to my MRI when transport was going to take too long. I think they hoped to get me transferred off the unit quickly, and for some reason the team decided I needed to have my follow up MRI before transfer (I'm not sure if that's standard or not but I got the impression they were just being extra careful with me since Dr T went out sick right after my surgery). Transferring from the bed to the MRI table was hard. I felt like I had no neck muscles and my head weighed 50lbs. I must have fallen asleep in the MRI (I was better medicated this time for sure, haha. I got IV pain meds right before we left the unit and I heard the NP ask the nurse to bring another dose with her just in case). I know I kept my eyes closed this time. When it was time to go back to the bed from the MRI table they lifted me on a sheet instead of having me transfer. I guess when they saw how little I am they decided it was easier for them to do it than me. After the results showed a fair bit of swelling and an "infarct", they decided to keep me in the NCCU. Of course, those are both normal for someone who just had brain surgery including part of their cerebellum removed (the "infarct"), so when Dr T came back in the next morning and read the MRI himself, he cleared me to go to the regular floor.
-Matt's dad's doctors, Dr Q (the neurosurgeon I originally saw) and Dr B coming in to check on me when they saw my name on the board. Dr B wasn't even sure we were related but saw the last name and figured, I guess, how many of us can there be? She asked if I was related to Matt's dad, and I said yes I'm his daughter in law, and she expressed her condolances and asked if there was anything she could do for me. It was very nice of them.
-the second morning (Thursday) the ENT team came in, they had me try to drink some water to test my swallow. After swallowing (or attempting to) they had me count to five. They thought my voice was too gurgly and decided speech language pathology needed to do a formal swallow test. I was pretty scared I wouldn't pass. When the SLP came, she had me start with some baby food apple sauce. I was able to eat it, so I got to move on to graham crackers iun tiny bites. I could eat that, too, so she declared me fit for a mechanical soft diet. Still, I was so happy to have my trusty suction at the ready, just in case I couldn't handle it. That fear of aspiration lasted a long time.
-one night a friend who works at Hopkins came up to visit me after her shift. I didn't want to keep my glasses on the unit with me, as I was afraid they'd get lost, so I couldn't see her. After saying hello I had to ask "Who is it I'm talking to?"
-Frank, the last day shift nurse I had, was so funny. One time I broke the "on/off" switch on my suction and he had to get me a new one. Another time, I decided to try to go from the toilet to the bed (approximately two steps) by myself. Both times he was like "Whoa, girlfriend!"
-and of course the frequent neuro checks. "Grab my fingers. Sqeeze. Push me out. Pull me in. ..."
-(Edit to add..) the wheelchair ride from the NCCU to the regular floor. My poor nurse had been working hard to get me transferred during the night shift and I had given up and fallen asleep. I felt bad because I knew my aunt, who was going to spend the night with me if I was able to get a private room, was waiting. When it was time we quickly gathered my little bit of things (and I had to say goodbye to my yankauer!), put the yellow bucket on my lap, and rolled down the hall. I was so dizzy and disoriented. That was the worst wheelchair ride ever. And I didn't have my glasses still so I couldn't see anything, either. I might as well have been on a loop-de-loop rollercoaster the way I felt, only it wasn't fun. In fact, I wonder if regular roller coasters will ever be fun to me again or if they will just be sickening. (/edit)
There's probably more but not that I can think of this second. I would love to get a copy of my medical record to see if it all sounds as eventful on paper as it is in my memory.
Thursday, October 15, 2009
Three Weeks (and some days) Postop
A little late again. Oh well.
I've had two PT appointments so far. Mostly they've been testing me, and mostly I've done pretty good. They did recommend continuing with three times a week sessions, at least for the next four weeks, to work on strength on my left side and vestibular function (balance). Probably if I were old they wouldn't worry about it too much but since I'm not, it makes sense to try to work on returning to as normal as function as possible. Hoping to get back home soon to work on 'normal' things around the house. I put the baby's pajamas on tonight, and it took me forever and Matt had to do the pants over again because the footies got all turned around, but they got on. She wasn't quite patient about it so I joked about "incompetent mommy". But I think with practice I'll get this stupid left hand back up to snuff.
My major problem this week has been in scheduling stuff. I finally heard back from the doctor I originally saw (on Sept 29th) to do my eye surgery, and he can't do the proceedure until Nov 2nd. So then I called the eye Dr I saw last friday, and he doesn't think I can wait that long (neither do I), so he reffered me to a Dr in his practice that does the same proceedure. I thought I was told I could have it done this friday (tomorrow), and organized my PT around that, but when I went in to see the new Dr, he said he would do it *next* friday. So then I had to reschedule my PT and the start of my OT. Now OT won't start until Oct 30th. And I had another week with plastic wrap on my deteriorating eye. Darn.
I've learned to sleep laying down. So that's cool. Also cool, but gross, is the scab on the incision is starting to come off. It's a little scary, and itchy. Oh, and gross. But I hear it looks good.
Some things that are bothering me:
-tinnitus in the left ear. I hear nothing but white noise constantly.
-the left side of my face. I wish it would just move!
-my incision. It hurts.
-my left hand. It's stupid at doing things.
-my teeth on the left. They just feel weird and out of place.
-eating. It's tiring and takes longer than usual. The up side of this is I may finally loose my baby weight. The bad news is food is the best!
I also caught the kid's cold this weekend. Coughing, sneezing, and nose blowing are not comfortable things. It's slowly getting better, but very slowly. I'm afraid it might move into sinus infection territory.
Trying to get involved with the Grey Ribbon Crusade for brain tumor research. I'll let you all know when I hear about a walk-a-thon or something.
I've had two PT appointments so far. Mostly they've been testing me, and mostly I've done pretty good. They did recommend continuing with three times a week sessions, at least for the next four weeks, to work on strength on my left side and vestibular function (balance). Probably if I were old they wouldn't worry about it too much but since I'm not, it makes sense to try to work on returning to as normal as function as possible. Hoping to get back home soon to work on 'normal' things around the house. I put the baby's pajamas on tonight, and it took me forever and Matt had to do the pants over again because the footies got all turned around, but they got on. She wasn't quite patient about it so I joked about "incompetent mommy". But I think with practice I'll get this stupid left hand back up to snuff.
My major problem this week has been in scheduling stuff. I finally heard back from the doctor I originally saw (on Sept 29th) to do my eye surgery, and he can't do the proceedure until Nov 2nd. So then I called the eye Dr I saw last friday, and he doesn't think I can wait that long (neither do I), so he reffered me to a Dr in his practice that does the same proceedure. I thought I was told I could have it done this friday (tomorrow), and organized my PT around that, but when I went in to see the new Dr, he said he would do it *next* friday. So then I had to reschedule my PT and the start of my OT. Now OT won't start until Oct 30th. And I had another week with plastic wrap on my deteriorating eye. Darn.
I've learned to sleep laying down. So that's cool. Also cool, but gross, is the scab on the incision is starting to come off. It's a little scary, and itchy. Oh, and gross. But I hear it looks good.
Some things that are bothering me:
-tinnitus in the left ear. I hear nothing but white noise constantly.
-the left side of my face. I wish it would just move!
-my incision. It hurts.
-my left hand. It's stupid at doing things.
-my teeth on the left. They just feel weird and out of place.
-eating. It's tiring and takes longer than usual. The up side of this is I may finally loose my baby weight. The bad news is food is the best!
I also caught the kid's cold this weekend. Coughing, sneezing, and nose blowing are not comfortable things. It's slowly getting better, but very slowly. I'm afraid it might move into sinus infection territory.
Trying to get involved with the Grey Ribbon Crusade for brain tumor research. I'll let you all know when I hear about a walk-a-thon or something.
Saturday, October 10, 2009
The Left Eye
I went to another doctor to check out my un-closing, un-blinking, creepy left eye yesterday. This guy is a regular MD who specializes in corneas and problems of this nature so he seemed to know what he's talking about / be an expert in this type of thing.
He said my eye looks pretty good, all things considered. I'm supposed to keep on the hourly eye drops (changed kind again - I never knew eye drops could get so expensive!), lacrilube ointment every 4 hours, and constant "moisture chamber" (the medical word for the plastic wrap held on with a ring of vaseline around my eye). He also added this prescription thing that's like a vaseline sprinkle we're supposed to put in my lower eye lid three times a day that grows and then melts to provide more constant moisture. It's weird and gross, but whatever.
A few interesting moments from the visit -
-When the tech was getting my history and then asked how old I am and I said "24", she looked SO sad. Like she was going to start crying. It would have been funny if it weren't actually pretty sad.
-The Dr half jokingly offered to sew my eye closed and I was just like "no".
-The Dr said "tell me when you feel this" and poked my eye with a piece of cotton a few times before I just shrugged and he stopped. I never felt it.
-I need to go sooner than later for my eye fixing surgery because my cornea could potentially 'melt', even with all these precautions.
He asked my 'prognosis' and I didn't really know what to say because I wasn't sure what he was referring to. I was thinking "well they said they removed all the tumor and it's a benign vestibular schwannoma, but that doesn't mean it can't ever grow back or I get another one, and besides, it already effed me up pretty bad", but what he meant was in regards to my facial nerve so I said "well, they said it's anatomically preserved but was pretty stretched out so we just have to wait and see." He nodded. He said, "Yeah I've seen this where the nerve is stunned and then wakes up, and I've seen this where the nerve is stunned and stays that way."
I know the docs speak very optimistically, but I'm thinking I'm going to be stuck like this for a very long time, if not forever.
He said my eye looks pretty good, all things considered. I'm supposed to keep on the hourly eye drops (changed kind again - I never knew eye drops could get so expensive!), lacrilube ointment every 4 hours, and constant "moisture chamber" (the medical word for the plastic wrap held on with a ring of vaseline around my eye). He also added this prescription thing that's like a vaseline sprinkle we're supposed to put in my lower eye lid three times a day that grows and then melts to provide more constant moisture. It's weird and gross, but whatever.
A few interesting moments from the visit -
-When the tech was getting my history and then asked how old I am and I said "24", she looked SO sad. Like she was going to start crying. It would have been funny if it weren't actually pretty sad.
-The Dr half jokingly offered to sew my eye closed and I was just like "no".
-The Dr said "tell me when you feel this" and poked my eye with a piece of cotton a few times before I just shrugged and he stopped. I never felt it.
-I need to go sooner than later for my eye fixing surgery because my cornea could potentially 'melt', even with all these precautions.
He asked my 'prognosis' and I didn't really know what to say because I wasn't sure what he was referring to. I was thinking "well they said they removed all the tumor and it's a benign vestibular schwannoma, but that doesn't mean it can't ever grow back or I get another one, and besides, it already effed me up pretty bad", but what he meant was in regards to my facial nerve so I said "well, they said it's anatomically preserved but was pretty stretched out so we just have to wait and see." He nodded. He said, "Yeah I've seen this where the nerve is stunned and then wakes up, and I've seen this where the nerve is stunned and stays that way."
I know the docs speak very optimistically, but I'm thinking I'm going to be stuck like this for a very long time, if not forever.
Thursday, October 8, 2009
Two Weeks Post-Op
Okay, so it's a little more than two weeks postop. But pretty close.
Things are slowly improving. I can walk! I get around the house pretty good and even did okay accompanying Matt and the kids to the park. I'm a long way from "back to normal", so it is very frustrating, but being able to get my own food out of the fridge is cool. I'm looking forward to a day when I can yet again manage two kids in a grocery store, which currently sounds terrifying and would likely take me the better part of the day, if I could do it at all.
I can also eat a regular diet. I was on 'Mechanical soft' in the hospital, which basically means you can have anything but it has to be pureed (and sometimes then re-shaped into a more 'classic' form, in the case of things like chicken breasts). The only thing is, like everything else, I'm very slow eating. I have to be super careful when swallowing because I do feel more apt to choke if I don't consciously think about each swallow. Also, I get tired because I'm only chewing on the right side. The left side just doesn't feel strong enough. I don't like to eat in front of people because I can't control what's going on on the left and sometimes food falls out. It's gross. But I don't have to eat with a towel on my lap anymore, so it's getting better. I'm working on drinking out of a regular glass so I won't always need a straw. At least I can drink with a straw without having to pinch my outh closed with my hand like I had to in the hospital. And this is all better than a feeding tube, of course.
The left side of my face still shows no signs of trying to move voluntaily. I forgot the other day and tried to whistle, only to realize I can't.
The worst part about this is it means I still can't close my left eye all the way. So I have drops to put in every hour, lubricant (essentialy vaseline) to put in every four hours (which I can't do myself because I touch my eye without knowing it), and I have to wear a "moisture chamber" (aka plastic wrap held on with a ring of vaseline) all the time. The good news is I saw the eye doctor last week and my eye looks good still. I see a corneal specialist tomorrow, and every week until my next surgery, which isn't scheduled yet. For this surgery they will put a platinum weight in my upper eyelid and lift my lower eyelid. I'm not happy about it. If I only needed the weight it could be done already since it's just an outpt thing. But with the lower lid thing they have to put me to sleep. Yuck. I'm also afraid that one day my face will 'wake up' and then my eyes won't be even. The weight is removable but I think the lower lid lift is a permanent thing. I like my eyes, saggy lower lids and all. Of all the cosmetic surgeries to have to have done for medical reasons, this is not the one I'd choose.
However, it will be nice to be able to close my eye and loose this plastic patch that I can't see through clearly. I think my lack of clear vision on that side is really making things worse as far as walking, dizziness, and general disorientation.
Also crappy is not being able to smile right, and not being able to speak 100% clearly. I scare myself in the mirror, so I know it has to be weird to other people. Big thanks to my family and friends for not looking at all horrified!! At least it is October.
I've been watching a lot of TV lately, and as much as I try to be reasonable, I can't help but just get angry looking at all the whiney people who can move their faces. I'm like "You Dummy! You can smile on both sides and you don't even care! It's not fair." Very not reasonable or nice of me, but still. Be thankful for the little things you can do. I'm so happy I can walk and talk and use the bathroom on my own. I guess I didn't think about it before.
My left arm and leg don't cooperate with me as they did before, and I have some tingling in my left hand. Don't know what that's about. I start outpt physical therapy next week so maybe we'll see then.
I've ridden in the car a couple times. The first time I got really sick feeling, but it's getting better now.
I hear my incision looks pretty good. I can't wait until it's all healed up because 1) it feels swollen and itchy and yucky, 2) I want to scrub my hair out really good, and 3) I forgot 3. I did have a three.
I forget a lot. Even more than preop. It's bad.
Oh yeah, 3) it scares me. I've seen opened incisions and they are gross. I just want one thing healed.
No idea if I'm hearing a tiny bit in the left ear or not. I think not. If I stratch my ear it sounds like nothing. It just sounds like an empty seashell all the time.
For meds, aside from the eye stuff I'm down to just tylenol. And I'm trying to cut that back. But no more decadron, protonix (goes with the decadron because it beats up your stomach), or oxycodone. The oxy didn't do much for pain butmake me more dizzy. So I'm down to my regular extra strength tylenol. Trying to go down to twice a day from four times, so as to spare my liver a bit.
Ouch, sneeze. Sneezes suck.
I'm still having to sleep sitting up in a recliner. I tried sleeping in a bed a ew nights ago and woke up feeling nauseated and bobble-headed (swollen) after two hours, so I'll try again in awhile.
Still hot all the time. My internal thermostat's busted.
Matt is the best. He's doing all the kids watching and stuff for them like laundry and baths and carting to sports, and then coming to my parent's house (where I am) to help me in the shower and let us all hang out awhile - back and forth. And even when I whine and am depressed he still seems okay and cheers me up. We are very lucky for our support system, we couldn't do it without them!
Things are slowly improving. I can walk! I get around the house pretty good and even did okay accompanying Matt and the kids to the park. I'm a long way from "back to normal", so it is very frustrating, but being able to get my own food out of the fridge is cool. I'm looking forward to a day when I can yet again manage two kids in a grocery store, which currently sounds terrifying and would likely take me the better part of the day, if I could do it at all.
I can also eat a regular diet. I was on 'Mechanical soft' in the hospital, which basically means you can have anything but it has to be pureed (and sometimes then re-shaped into a more 'classic' form, in the case of things like chicken breasts). The only thing is, like everything else, I'm very slow eating. I have to be super careful when swallowing because I do feel more apt to choke if I don't consciously think about each swallow. Also, I get tired because I'm only chewing on the right side. The left side just doesn't feel strong enough. I don't like to eat in front of people because I can't control what's going on on the left and sometimes food falls out. It's gross. But I don't have to eat with a towel on my lap anymore, so it's getting better. I'm working on drinking out of a regular glass so I won't always need a straw. At least I can drink with a straw without having to pinch my outh closed with my hand like I had to in the hospital. And this is all better than a feeding tube, of course.
The left side of my face still shows no signs of trying to move voluntaily. I forgot the other day and tried to whistle, only to realize I can't.
The worst part about this is it means I still can't close my left eye all the way. So I have drops to put in every hour, lubricant (essentialy vaseline) to put in every four hours (which I can't do myself because I touch my eye without knowing it), and I have to wear a "moisture chamber" (aka plastic wrap held on with a ring of vaseline) all the time. The good news is I saw the eye doctor last week and my eye looks good still. I see a corneal specialist tomorrow, and every week until my next surgery, which isn't scheduled yet. For this surgery they will put a platinum weight in my upper eyelid and lift my lower eyelid. I'm not happy about it. If I only needed the weight it could be done already since it's just an outpt thing. But with the lower lid thing they have to put me to sleep. Yuck. I'm also afraid that one day my face will 'wake up' and then my eyes won't be even. The weight is removable but I think the lower lid lift is a permanent thing. I like my eyes, saggy lower lids and all. Of all the cosmetic surgeries to have to have done for medical reasons, this is not the one I'd choose.
However, it will be nice to be able to close my eye and loose this plastic patch that I can't see through clearly. I think my lack of clear vision on that side is really making things worse as far as walking, dizziness, and general disorientation.
Also crappy is not being able to smile right, and not being able to speak 100% clearly. I scare myself in the mirror, so I know it has to be weird to other people. Big thanks to my family and friends for not looking at all horrified!! At least it is October.
I've been watching a lot of TV lately, and as much as I try to be reasonable, I can't help but just get angry looking at all the whiney people who can move their faces. I'm like "You Dummy! You can smile on both sides and you don't even care! It's not fair." Very not reasonable or nice of me, but still. Be thankful for the little things you can do. I'm so happy I can walk and talk and use the bathroom on my own. I guess I didn't think about it before.
My left arm and leg don't cooperate with me as they did before, and I have some tingling in my left hand. Don't know what that's about. I start outpt physical therapy next week so maybe we'll see then.
I've ridden in the car a couple times. The first time I got really sick feeling, but it's getting better now.
I hear my incision looks pretty good. I can't wait until it's all healed up because 1) it feels swollen and itchy and yucky, 2) I want to scrub my hair out really good, and 3) I forgot 3. I did have a three.
I forget a lot. Even more than preop. It's bad.
Oh yeah, 3) it scares me. I've seen opened incisions and they are gross. I just want one thing healed.
No idea if I'm hearing a tiny bit in the left ear or not. I think not. If I stratch my ear it sounds like nothing. It just sounds like an empty seashell all the time.
For meds, aside from the eye stuff I'm down to just tylenol. And I'm trying to cut that back. But no more decadron, protonix (goes with the decadron because it beats up your stomach), or oxycodone. The oxy didn't do much for pain butmake me more dizzy. So I'm down to my regular extra strength tylenol. Trying to go down to twice a day from four times, so as to spare my liver a bit.
Ouch, sneeze. Sneezes suck.
I'm still having to sleep sitting up in a recliner. I tried sleeping in a bed a ew nights ago and woke up feeling nauseated and bobble-headed (swollen) after two hours, so I'll try again in awhile.
Still hot all the time. My internal thermostat's busted.
Matt is the best. He's doing all the kids watching and stuff for them like laundry and baths and carting to sports, and then coming to my parent's house (where I am) to help me in the shower and let us all hang out awhile - back and forth. And even when I whine and am depressed he still seems okay and cheers me up. We are very lucky for our support system, we couldn't do it without them!
Friday, October 2, 2009
The Surgery - In Nicole's Words
I just went back and updated myself on my own blog. My mom did a great job keeping it going! Thanks, mom. :)
But here's how the surgery day went for me...
We got to Hopkins at 5:15 and checked in and started waiting. When they separated the patients from the families half of us went to one preop room, and the others (myself included) went "straight back", to another one. One of theother patients with me said "I don't want to go 'straight back'." They gave us a stretcher (I helped move my own), closed a curtain around it, and told us to "take everything off, put it all in the bag, put on the gown with the opening the the back, and wait for a nurse." It stunk in that room. It reminded me of the smell in the science lab when dissected sharks in 6th grade - like fish and preservatives. Everyone around me was seen by a nurse, had an IV started, and was allowed to have their families with them. Finally my nurse came, and finally the phlebotomist came, and finally they let my family come. I was upset to have an IV in my hand, that already hurt, since I have good forearm veins, but was trying to be a 'good patient' and go with the flow. I was just afraid they wouldn't let me see my family before taking me back.
All the docs and everyone came through, as my mom posted. I was glad everyone else looked happy and well rested.
I think I was the first patient to leave preop for the OR. The circulating nurse and anesthesia student/fellow/whoever wheeled me back. They warned me about the cold and I was like "I know", and explained what I do.
There must have been about seven people already in the OR when I came in. I transferred to the OR table, which all kinds of pads and positioners and egg crate stuff on it. They put the arm boards on and started 100% O2. The anesthesia person with the mask said "I'm going to do some more chin tilt" and really had the mask on there. I felt like I could breathe in but not out and got scared and started to shake. I felt something tingly being rubbed on my right forearm, and a nurse holding my hand (thank goddness!), and then I was asleep.
The next thing I remember everything was dark but I heard people talking and I was coughing and coughing and couldn't stop. I remember opening my eyes in the NCCU with people all around. I felt like I was inhaling all my saliva and couldn't stop coughing, though I thought to myself "You have to stop, it's not good for your ICP (intracranial pressure)!"
I remember my family coming in and they loooked so happy and said how good I looked. I felt confused because I felt like sh*t. I told Matt I wanted to die and he said "no you don't." So I told him "well I at least wish I was having a baby." Having babies ain't no thang. I don't know about this brain surgery stuff.
I don't know if I caught bits of what people were saying or made it all up, but I started to feel like my left upper lung lobe was filling with fluid and I couldn't clear it. I thought "fluid overload!" I felt like I could barely talk but needed help, so I started grabbing at stethescopes (at least, this is how it happened in my mind), putting them on my chest saying "listen! I'm drowning!"
They did a stat chest x-ray in bed and drew arterial blood gases (this is when I asked the nurse "I have an A-line?"). They turned out not too horrible - right lower lobe atelectasis and a pH of 7.43 is all I heard. Luckily they did a neb treatment that settled down the coughing and let me go to sleep when my family left. I think I asked for throat spray and they told me no. They all must have thought I was crazy!
More later... but now you can see why it was a little traumatic for me from day one.
But here's how the surgery day went for me...
We got to Hopkins at 5:15 and checked in and started waiting. When they separated the patients from the families half of us went to one preop room, and the others (myself included) went "straight back", to another one. One of theother patients with me said "I don't want to go 'straight back'." They gave us a stretcher (I helped move my own), closed a curtain around it, and told us to "take everything off, put it all in the bag, put on the gown with the opening the the back, and wait for a nurse." It stunk in that room. It reminded me of the smell in the science lab when dissected sharks in 6th grade - like fish and preservatives. Everyone around me was seen by a nurse, had an IV started, and was allowed to have their families with them. Finally my nurse came, and finally the phlebotomist came, and finally they let my family come. I was upset to have an IV in my hand, that already hurt, since I have good forearm veins, but was trying to be a 'good patient' and go with the flow. I was just afraid they wouldn't let me see my family before taking me back.
All the docs and everyone came through, as my mom posted. I was glad everyone else looked happy and well rested.
I think I was the first patient to leave preop for the OR. The circulating nurse and anesthesia student/fellow/whoever wheeled me back. They warned me about the cold and I was like "I know", and explained what I do.
There must have been about seven people already in the OR when I came in. I transferred to the OR table, which all kinds of pads and positioners and egg crate stuff on it. They put the arm boards on and started 100% O2. The anesthesia person with the mask said "I'm going to do some more chin tilt" and really had the mask on there. I felt like I could breathe in but not out and got scared and started to shake. I felt something tingly being rubbed on my right forearm, and a nurse holding my hand (thank goddness!), and then I was asleep.
The next thing I remember everything was dark but I heard people talking and I was coughing and coughing and couldn't stop. I remember opening my eyes in the NCCU with people all around. I felt like I was inhaling all my saliva and couldn't stop coughing, though I thought to myself "You have to stop, it's not good for your ICP (intracranial pressure)!"
I remember my family coming in and they loooked so happy and said how good I looked. I felt confused because I felt like sh*t. I told Matt I wanted to die and he said "no you don't." So I told him "well I at least wish I was having a baby." Having babies ain't no thang. I don't know about this brain surgery stuff.
I don't know if I caught bits of what people were saying or made it all up, but I started to feel like my left upper lung lobe was filling with fluid and I couldn't clear it. I thought "fluid overload!" I felt like I could barely talk but needed help, so I started grabbing at stethescopes (at least, this is how it happened in my mind), putting them on my chest saying "listen! I'm drowning!"
They did a stat chest x-ray in bed and drew arterial blood gases (this is when I asked the nurse "I have an A-line?"). They turned out not too horrible - right lower lobe atelectasis and a pH of 7.43 is all I heard. Luckily they did a neb treatment that settled down the coughing and let me go to sleep when my family left. I think I asked for throat spray and they told me no. They all must have thought I was crazy!
More later... but now you can see why it was a little traumatic for me from day one.
The 10th day Post-Op
Well, all. I was hoping to make a huge return to my blogging around now, with my own day by day of whst I can remember of the last ten days, but I'm not sure how it's going to work. As it turns out, typing is really hard. Maybe I'll go to video.
I just wanted to say that I am okay, but everything is pretty hard right now. It really is going to take a long time for me to recover. I don't know why, but I honestly wasn't expecting post op to be this bad.
Some great things at this point -
-I can swallow, and now can chew most things if I really concentrate.
-I can walk from the couch to the bathroom unassisted.
-I can walk all the way down the driveway and back, with a helper.
-I can move my jaw to the right AND left.
-I think I can hear a little in my left ear.
Some crap things at this point -
-The left side of my face is still pretty paralyzed (I last overheard my House-Brackmann score as 5/6 ... bad.)
-My left arm and hand are pretty weak and worthless.
-My left eye still doesn't close so I still have to wear plastic wrap on it. (I'm assuming these are all things my mom mentioned at some point.)
-My body feels like it was hit by a truck. My head feels like it was beaten with a bat in the back. Meds don't really work.
-I'm almost always hot and sweaty (but no fever!).
-I sleep a lot, but am having crazy dreams constantly and wake up with a start.
-I always, always feel like I am moving. I'm usually nauseated.
-I can't pick up my kids.
But the best thing is I'm not telling Matt to "pull the plug" anymore, so it must be getting a little better.
And that about wore me out for tonight so I'll return to the recliner couch I've been camping on (I also can't lay flat).
Thank you, thank you, yet again. I did get all the messages and pictures. I'll get to everyone personally eventually. Please be patient with me, I am extremely slow. (I feel like I need my picture on a Smucker's Jar with Willard Scott.)
Love,
Nicole
I just wanted to say that I am okay, but everything is pretty hard right now. It really is going to take a long time for me to recover. I don't know why, but I honestly wasn't expecting post op to be this bad.
Some great things at this point -
-I can swallow, and now can chew most things if I really concentrate.
-I can walk from the couch to the bathroom unassisted.
-I can walk all the way down the driveway and back, with a helper.
-I can move my jaw to the right AND left.
-I think I can hear a little in my left ear.
Some crap things at this point -
-The left side of my face is still pretty paralyzed (I last overheard my House-Brackmann score as 5/6 ... bad.)
-My left arm and hand are pretty weak and worthless.
-My left eye still doesn't close so I still have to wear plastic wrap on it. (I'm assuming these are all things my mom mentioned at some point.)
-My body feels like it was hit by a truck. My head feels like it was beaten with a bat in the back. Meds don't really work.
-I'm almost always hot and sweaty (but no fever!).
-I sleep a lot, but am having crazy dreams constantly and wake up with a start.
-I always, always feel like I am moving. I'm usually nauseated.
-I can't pick up my kids.
But the best thing is I'm not telling Matt to "pull the plug" anymore, so it must be getting a little better.
And that about wore me out for tonight so I'll return to the recliner couch I've been camping on (I also can't lay flat).
Thank you, thank you, yet again. I did get all the messages and pictures. I'll get to everyone personally eventually. Please be patient with me, I am extremely slow. (I feel like I need my picture on a Smucker's Jar with Willard Scott.)
Love,
Nicole
Wednesday, September 30, 2009
Discharge!
Nicole was discharged from Hopkins Tuesday afternoon. Knowing that she needed someone with her 24 hours/day, she opted to come stay with her Dad and I for a while until she can get a bit stronger. Her care, compounded with the day to day care of two children, would be a lot for Matt - although I know he would handle it if necessary.
As the doctors tried to tell us, recovery is going to be a lot more difficult than expected. Nicole will be going back to Hopkins in three weeks to have a procedure done to implant weights in her eyelids to help them close. Right now she has to put drops in every hour and an ointment every four hours plus wear the piece of Saran wrap over her L eye constantly. She'll also probably have to check in with an ophthalmologist every week until the procedure, just to make sure her cornea is being preserved with the measures currently being taken.
The pain and nausea and still pretty overwhelming. She was sent home with prescriptions for two days more of Decadron to take and pain medication. It's been difficult for her to go into the hospital feeling 'semi-OK' and then to be released feeling horrible with the left side of your face numb. But.... she's a great patient and she still does her exercises regardless.
She'll being have OT and PT sessions for 45 minutes each three days a week - hopefully at Kernan. And of course lots of follow up visits with all of the surgeons on the 'team'.
Friday, September 25, 2009
Moving Day (Well.....Evening)
Nicole's mother 'reporting' again.....
Hopefully this image is not too terribly graphic for fellow bloggers. It passed the 'squeamish' Dad test, so we figured it would be alright to post. You can see why her pain extends down into the neck with the backward 'S' incision.
Dr. T, the head neurosurgeon, said she is able to leave the CCU tonight and go to either Floor 8 or 9 in the Meyer building at Hopkins.
Last night Nicole had an MRI which showed swelling (predictable) of particularly the cerebellum. The word 'infarct' was mentioned, which was concerning, but when we spoke this afternoon with Dr. T, he explained this better to Nicole and I. The tumor, being quite large, was taking up considerable space and compressing many areas such as the cerebellum. Now that the brain has more room, it is expanding back into areas formerly occupied by the tumor . He said the MRI Department will use the word 'infarct' with what they see from the portion of the cerebellum removed, but there was no stroke.
Dr. C from Dr. F's ENT group said she is doing well but will need PT and OT after discharge. He said they would evaluate her progress at 6 weeks but it may be 12 weeks before she's really able to do most things. She was given some 'homework' by the Vestibular PT Department (Yes, there is a specialty within Physical Therapy specifically dealing with Vestibular disorders). One of the tasks she had to try gave me a headache just reading the description! It involves looking at a small 'X" and then turning your head side to side as you keep your focus on the 'X'.
Nicole will need to keep her L eye covered for some time because of corneal drying (She's still not able to totally close that eye when the other one closes tight). They are using a circle of Vaseline around her eye and then a Saran wrap piece to cover it.... so she can semi-see out of that eye.
This morning Nicole was trying to walk a bit with assistance. She feels like her left foot is cooperating more but she's still unsteady. The 'walk' with her nurses really tired her out and she was feeling worse this afternoon - she admits she probably overdid it.
She's down to IV's just in her R hand and a pain level around 5. She ate a few mandarin oranges and drank a little milk for lunch - hopefully she'll feel more like dinner when Matt is there.
Seemed to be a lot of confusion over whether she had to stay in the CCU another night or not. The ENT group was saying she needed to stay another night. Dr. T. said she could be moved. (By the way, he was out earlier in the week from a kidney stone, not Nicole's case!)
Since Dr. T. is the 'head' surgeon, apparently what he says goes, so she'll be moving on!!!
My sister, (Nicole's aunt Cathy), will be coming in to stay with her this evening. Dr. T. said this would be fine. Cathy is a nurse at St. Agnes so she figures if she's given any grief about being there overnight, she'll go into 'private duty nurse' mode. Nicole is still feeling apprehensive so hopefully having Cathy there will help her rest and sleep.
Thursday, September 24, 2009
Second Post Surgical Day
It's Nicole's mother, Susan, writing an update again. Nicole filled me in today on what has happened from my last posting.
Things that occurred last night:
- her 'A' line was removed
- she needed a nasal cannula since she was 'de-sating' when falling asleep
- they had to draw blood from her arm - can't get from the L hand any longer
- she got her Spirometer up to 1,700 one time - but usually it's more like 1,000-1,500
- she tried to sleep in 3 hour increments - she still has a fear of aspiration while sleeping
- she has been changed from Fentanyl to Morphine to Hydrocodone for pain
- she had a bed bath
- she needed Magnesium since her level went down to 1.8
- she's had to get insulin a few times - her Glucose this afternoon was 120
- still on Phenergan for nausea
- still has double vision - her L eye is now covered since there are concerns about corneal drying as she can't close that eye totally
What happened today:
- Dr. T is ill and Dr. W, his associate, saw Nicole this AM (Nicole commented she hoped her case didn't make him sick!)
- the ENT surgeon, Dr. S, did a swallowing test and decided there was 'too much gurgling' so a Speech/Language pathology consult was ordered
- The Speech/Language Pathology consult showed she was ready to try soft foods and liquids -but she'd need to go slow and pinch the L side of her lips together to use a straw; to use suction if she felt like she was aspirating
- it would be OK for her to clear her throat
- she had a chest x-ray but still no word on the atelectasis in the RLL
- Her Foley was removed (she was glad about this )
- With the help of two nurses she was able to stand and transfer to a recliner
- She can't be released to a stepped down unit from Critical Care until an MRI is performed and reviewed by the surgeons
- The Occupational Therapist did an examination and said she'd need OT and PT after her release. Nicole hopes this will be possible at Kernan.
Tomorrow the plan is to see how she does when she tries to walk.
Observing her as the nurses helped her to the recliner, the left foot is dragging and she definitely has to concentrate hard to lift that leg.
Before she will be allowed to leave the hospital, she will have to demonstrate an ability to climb stairs.
Some additional information she told me today:
- the surgeon did have to remove a piece of her cerebellum
- the vestibular nerve had already been destroyed by the tumor but apparently she had been compensating well over the years with her right side
Wednesday, September 23, 2009
First Post Surgical Day
I hope these images are not too graphic for anyone, but Nicole wanted to provide the information for those following her blog. I thought she looked amazing today. It's hard to believe what she had been through less than 24 hours ago. Her first night apparently was a difficult one as she described vomiting bile and needing Potassium which burned like crazy. She is hoping her glucose level was better today as it was 180 last night - presumably from the steroids. Still the spot in her RLL. Nicole is working with her Spirometer (blowing 1,000-1,500) and swabbing and suctioning herself (as you can see in the last picture). Tomorrow she should have her swallowing test and we're hoping that goes well. Her right hip was bothering her with an area of skin breakdown from lying on that side for so many hours during surgery. She continues to be in a lot of pain but can request Fentanyl every half hour, if needed. She mentioned Dr. Tamagro needed to cut through the musculature in her neck so the pain has been down the entire left side of her head to her shoulder. Her nurse told us her neurosurgeon doesn't like for his patients to have very much pain medication since he wants to be able to note neurological changes. She still isn't able to close her L eye totally so it was bandaged shut last night and the staff has been good about putting in lubricating drops.
Some good news from her neurosurgeon - Nicole told us Dr. T said they were able to preserve all of her nerves except the vestibular so they are hoping against hopes some time down the line she may even be able to regain her hearing in the left ear!
Not losing her sense of humor, when Dr. T asked if she had blurry vision, she said she always had blurry vision unless she had her glasses on but if seeing him with 4 eyes meant her vision was blurry and double, then yes, that was the case. (Sounds like the joke of 'Doctor, will I be able to play the piano when you are finished the surgery?')
For all of her nursing friends following this blog, I hopefully have all of the below information correct regarding her stats and meds-
1- 9%Sodium Chloride/ Decadron 10mg/100cc
2- Phenyephrine 20mg/NaCl 248ml/Vessicant 2ml
3- Potassium Chloride 20mEq
4- Fentanyl - every half hour prn
Pulse at time of recording - 87, BP 104/62mmHg, Respirations-10
Nicole hopes to be moved to a stepped down unit tomorrow - she would still be in the Meyer building at Hopkins just on a different floor. I suppose a lot will depend on the status of the right lower lobe clearing and her swallowing test.
Several people have asked us about flowers. Of course while in the NCCU (Neuro Critical Care Unit), she can't have anything in the room. But speaking with Nicole prior to the surgery, she mentioned her cats would destroy any flowers/plants she might receive.....and honestly, I think she'd prefer a card or a gift certificate to her favorite store, Target, over flowers!
The Longest Day
Good morning, it's Nicole's mother, Susan, taking over at the writing desk helm for Nicole while she's in Johns Hopkins.
Tuesday, September 22nd proved to be one of the longest days in my life and probably feelings were the same for Matt and Nicole's father, Rick.
At 5:15am we arrived at the hospital and were waiting in the first of many waiting rooms with at least 10 other patients and their families scheduled to have surgery that morning. Nicole was taken back to be prepped for surgery. At 7am Matt, Rick and myself were allowed to meet in the surgical prep area (see photo). We were the last to be called back as there had only been one phlebotomist that morning and Nicole was the final patient to get her IV started.
Dr. F, the main ENT surgeon, had already been in as they had not been able to find Nicole's surgical consent earlier and had her re-sign that paperwork. While we were with Nicole, Dr. Z, anesthesiologist, completed her examination and Dr. S, another ENT surgeon, (Dr. F's associate) marked the L side of her head (Yes, let's get that right.). Dr. S will be the physician to test her swallowing capacity on Thursday. Until then she's NPO. Dr. Sa, the head anesthesiologist, and Dr. T, the head neurosurgeon also came by.
At 7:30am, Matt, Rick and myself were moved to the GOR (general operating room family waiting area). We were told it could be an hour before they would actually begin the surgery. Our first update came at 9:24am indicating the surgery was underway with Dr. T beginning the procedure.
Our second update came at 11:05am - they were still operating.
Our third update came at 1pm. Nicole was stable and Dr. F was ready to begin his component of the surgery. Nicole's uncle, Steve, came to join us in 'the wait'.
Our fourth update came at 3pm. They hoped to be finished by 5pm.
By 4pm everyone from our original group of surgical patient family members beginning at 5:15am had met with their surgeons and had gone to recovery. Even the renowned Dr. Ben Carson had completed three surgeries in this time frame - had come to talk with three different families and we were still sitting there. Nicole's cousin, Cammie, had joined us as we waited....
At 4:30pm we were told the procedure would be 45 minutes more and that everything was going well. By this point I sincerely doubted they would have told us otherwise. What were they going to tell you over the waiting room phone - 'things aren't going so well?' This is when the waiting got to be a very long process....
At 6pm Dr. T came out to speak with us. The tumor was a VS and he felt he got it all! Dr. T indicated if you had an option to pick a VS or a meningioma, this was the way to go. The tumor was pretty stuck to the facial nerve, so he expected Nicole to have a level of facial paralysis... although he hoped this would resolve with time.
We moved to the NCCU waiting area (Neuro Critical Care Unit). Again to sit and wait until we could see her. I was really anxious about this part of the day as I remembered how horrible my father looked after his brain surgery for a meningioma. When Matt and I were able to go back around 6:30pm, she looked amazing! They had only shaved the area of hair behind her ear and she wasn't bandaged all over her head. There was the predicted swelling and some roving eye movements, but truly incredible for what she had been through. She was having some trouble breathing and wanted to cough. She was getting a little anxious because she couldn't clear her lungs and couldn't swallow so they gave her a nebulizer treatment with Albuterol to open her airway, which seemed to help. There were some right lower lobe concerns which they were going to watch overnight. She had also been on medication for low blood pressure, which they hoped to wean her off of. When a short PE was performed she did really well, but as expected, she couldn't focus both eyes without dizziness and nausea. There was also the aspect of not being able to swallow. She expressed fear to the nursing staff that she was going to fall asleep and aspirate. She said her pain level was a 7 out of 10.
By 8pm (visiting hours had been 5-8pm), Matt, myself, Rick, Steve and Cammie had been given a few minutes each to spend with her. At 8:20pm, Matt and I were asked, in a kind way, to leave so she could rest. The staff was to call Matt if there were any concerns which developed overnight.
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