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.
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.
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