I'll add the write-out later, but here's the graphic I made for the tarsorrhaphy proceedure. I had it done two weeks ago and the stitches out today. There's a lot to say about it, but this'll do for now.
Wednesday, December 1, 2010
The Tarsorrhaphy
I'll add the write-out later, but here's the graphic I made for the tarsorrhaphy proceedure. I had it done two weeks ago and the stitches out today. There's a lot to say about it, but this'll do for now.
Monday, November 8, 2010
The One Year Appointments
A couple of one-year post op appointments to update everyone on...
I started seeing a neurologist about my headaches. I'm sure I've described them all here before. I basically have a non-stop low-grade (2-3/10) headache that never goes away. A couple times a week it'll go up to a mid-grade headache (5-6/10) and then a couple more times a week it'll be more in the 'migraine' territory (7-8/10).
So, they took my history and did an exam and the standard stuff, and gave me some prescriptions to try. Of course, they also said/implied that there might not be much they can do for me as long as I'm on a funky nightshift schedule and don't sleep or eat at regular times. Makes sense I guess.
I did a one week steroid taper, I guess to make sure any residual swelling was calmed down (? I guess I should have asked better questions). Also, they prescribed nortriptyline to take daily. This drug is typically used as an antidepressant but can also be used in lower doses for migraines/headaches. I think the hope here is that it will generally lower the level of everything so that the constant headache is gone and the others are bumped down into the 'tolerable' level.
After a month on nortriptyline , I can say the up side is that it does help with the basic level headache. I may have even had a large portion of a day with no headache at all! The down side to it is it makes you sleepy. Sometimes nortriptyline can also be used to help people who have trouble falling asleep. It was a bit of an experiment to figure out a good time to take it every day, since my schedule is so wacky, but I think I figured out 4:30 am is the best time. It means on a 'dayshift' day that I have to wake up to take it, but then I get to 'sleep it off a little while'. Then for a 'nightshift' day taking it at that time means it's close to when I get to go home and go to bed (usually 8:30-9 am).
These probably aren't things the average dude taking this has to worry about. They usually prescribe it to be taken before bed, or at least around dinner time when you're pretty close to bed. But in case there is some other night-shift vestibular schwannoma patient with post-op chronic migraine somewhere else in the world, maybe this will be helpful information.
I think the fatigue will get better with time as I get more and more used to it. The first day I took it I took it at like 9am and spent most of the day on the couch before declaring "I can't do it!" and going to bed around 6pm. But it was only like that for one day, so that's good. Still, brain surgery patients are pretty tired people to begin with...
I go back in January for another follow up. I'm not sure if they'll adjust things or not, since I am still having the severe migraines and taking motrin or tylenol probably 4-5 times a week. :/
Appointment #2 was for my 1 year MRI, and subsequent neurosurgeon review of it.
The MRI went fine. I really liked the tech that did it and will probably try to specifically request him next time. I think his name was Chris. When he put the IV contrast in my arm didn't feel on fire at all! Of course I got my CD copy and ran home to review them myself. I was pretty amazed at how "normal" looking they looked! I'll have to put a progression of shots together sometime. To me, a more-or-less untrained eye, it looks like a lot of healing has gone on, which I guess explains part of my needing a million hours of sleep a night.
I really didn't want to go to a neurosurgeon, as I find I don't like their attitudes, so I asked the neurologist if I really had to, and she said I did. She said they're the best person to review the MRI. So that's pretty much all the appointment consisted of. Well, one and a half hours of waiting, with no magazine but "The Economist" and some travel brochure on the table to read, and then a 5 minute review of the MRI, a "looks good", and "okay, see you again next year."
I think maybe they should increase the number of "post operative care" classes new surgeons get in school.
The last appointment, or appointment set, was for my eye. I was supposed to see Dr L for my regular eye check early in November. However, about a week and a half before that I was at work and noticed my eye really bothering me. I went into the bathroom and looked and it was all terrible and red and I swore I saw a little "divot" in it. Another nurse looked and saw the "divot" too so I pretty much cried and assumed I had a corneal ulcer and worried all night until I could call in the morning.
Dr L saw me the same morning and instead of the normal "Still looks great! Keep up the good work!" It was more of a "hmm...." There was a thing in my eye, but it wasn't a ulcer - it's something called a "dellen". The way he explained it to me, the cornea is made up of layers that are normally kept moisturized so they're kind of 'spongy', and like a sponge, when they dry out they get harder and kind of shrink down, creating this kind of crater looking thing - the dellen.
If you're really interested, here's a neat video I found of an eye with a dellen. This is what I saw in my eye. (If you're creeped out by eyes, don't look - but there's no blood or anything.) While it's not an ulcer, it's also not good, and I'm pretty sure if left untreated could lead to worse issues like a corneal ulcer.
The problem is kind of three fold.
1) My left eye still doesn't really tear on it's own. I still do lots of Refresh Celluvisc drops in the day and eye ointment at night, but maybe I wasn't doing enough. I don't know. It's possible that since I put the drops in "as needed" and my over-exposed cornea is becoming less and less sensitive, I'm not able to tell when it's needed until it's really really needed. If that makes sense. That's just my guess, not anything expressly told to me by a professional.
2) Though the gold weight helps, my left eye still doesn't really blink well. It kind of 'twitches'. And when I go to close it there's still maybe a millimeter that's left open. Blinking helps to spread that tear film (or in my case, eye drop film) across everything. If I'm not blinking all the way, it's not getting spread all the way. The dellen was along the line where the tear film doesn't reach very much.
3) For some reason, I'm not even attempting to blink that often. In both eyes. Dr L observed me without my knowing it (Benjamin was in the room so he distracted with me with chit chatting with him. I didn't have my glasses on so I had no idea he was actually looking at my eyes.), and he said I only blink once or twice per minute. That's not normal. At least for adults. Babies only blink about that often, but adults are more in the 10-30 times per minute range.. at least in conversation. (Just did some interesting reading and found that blink rates are known to be different depending on the task, so you blink less when reading, for example. Makes sense.) Dr L said he doesn't know why that's happening.
What this means is, we've got to do more to protect my eye. So far we've got the gold weight, the punctal plug in the lower tear duct (so tears stay in my eye longer instead of draining through there), and the drops/ointment. Right off the bat Dr L went ahead and put a plug in the upper tear duct. So now there is no draining of tears at all (except down my cheek). He also referred me to another doc at U of MD.
I went to see the other doc last week. The good news is, when the resident did my exam she said the dellen wasn't there (Dr L had said, when I asked him, that they can resolve. Again, like a sponge, the cornea can re-wet and go back to normal. Later I read somewhere that this can happen within 24 hours.). I did have some "SPKs", which she wasn't impressed with, but I'm pretty sure that is still a change from my baseline. "SPK", I'm just now reading, stands for "Superficial punctate keratopathy". According to the Merck manual, these are "the death of small groups of cells on the surface of the eye". In an email from Dr L to the new Dr, Dr K, which he was nice enough to cc me on, it says I have "moderate central SPK". The resident told me these SPKs are along the 1mm where my eye doesn't close.
So the three options I was presented with were these:
1) Continue to use the drops and ointment, trying to use them more often, and see what happens.
2) Do something called a "lateral tarsorrhaphy", which is like stitching the outside corner of my eye closed so the tear film covers the injured area better.
3) Try a heavier gold weight.
#3 is pretty much out. I really don't want my eyelid sliced into multiple times, and sometimes the weight I have feels overly heavy to that thin skin, so I don't want it heavier.
I'm dancing between #1 and #2. I'm scheduled for the tarsorrhaphy with Dr K the wednesday after next, but I'm not convinced it's what's best. Initially when Dr K said it would probably help I was like "well if it'll help, let's do it!", and that's why I scheduled the appointment. But since then a few things have changed. First, I've noticed natural tearing in my left eye! It's not a lot, but it's there. I'm wondering if it'll be enough help to keep things okay. Second, I read more about the procedure.
Of course doing an 'image search' of what you're about to have done is never a good idea. So that scared me first of all. Then, I keep reading about how how 'rare' it is and about 'poor cosmetic outcome'. I know it'll make one eye look different from the other. On one side who cares since my face is already different from one side to the other. On the other side, do I really want to make it *more* "messed up"? Also, the 'rareness' of the procedure doesn't bother me so much from the standpoint of anything going wrong - I mean really it's a very minor thing. But, if it's so rare, like a last resort thing, then does it really need to be done now at the first sign of anything wrong?
I don't know. I'm going to have to call Dr L tomorrow to talk to him because I'm really fretting over this. I don't want to risk the health of my eye, but I just don't know if this is the time to be more conservative.
If anyone's interested, there's a description and graphics (drawings, not real creepy eyes) of the procedure here. It's just too late at night to type it all out now.
I started seeing a neurologist about my headaches. I'm sure I've described them all here before. I basically have a non-stop low-grade (2-3/10) headache that never goes away. A couple times a week it'll go up to a mid-grade headache (5-6/10) and then a couple more times a week it'll be more in the 'migraine' territory (7-8/10).
So, they took my history and did an exam and the standard stuff, and gave me some prescriptions to try. Of course, they also said/implied that there might not be much they can do for me as long as I'm on a funky nightshift schedule and don't sleep or eat at regular times. Makes sense I guess.
I did a one week steroid taper, I guess to make sure any residual swelling was calmed down (? I guess I should have asked better questions). Also, they prescribed nortriptyline to take daily. This drug is typically used as an antidepressant but can also be used in lower doses for migraines/headaches. I think the hope here is that it will generally lower the level of everything so that the constant headache is gone and the others are bumped down into the 'tolerable' level.
After a month on nortriptyline , I can say the up side is that it does help with the basic level headache. I may have even had a large portion of a day with no headache at all! The down side to it is it makes you sleepy. Sometimes nortriptyline can also be used to help people who have trouble falling asleep. It was a bit of an experiment to figure out a good time to take it every day, since my schedule is so wacky, but I think I figured out 4:30 am is the best time. It means on a 'dayshift' day that I have to wake up to take it, but then I get to 'sleep it off a little while'. Then for a 'nightshift' day taking it at that time means it's close to when I get to go home and go to bed (usually 8:30-9 am).
These probably aren't things the average dude taking this has to worry about. They usually prescribe it to be taken before bed, or at least around dinner time when you're pretty close to bed. But in case there is some other night-shift vestibular schwannoma patient with post-op chronic migraine somewhere else in the world, maybe this will be helpful information.
I think the fatigue will get better with time as I get more and more used to it. The first day I took it I took it at like 9am and spent most of the day on the couch before declaring "I can't do it!" and going to bed around 6pm. But it was only like that for one day, so that's good. Still, brain surgery patients are pretty tired people to begin with...
I go back in January for another follow up. I'm not sure if they'll adjust things or not, since I am still having the severe migraines and taking motrin or tylenol probably 4-5 times a week. :/
Appointment #2 was for my 1 year MRI, and subsequent neurosurgeon review of it.
The MRI went fine. I really liked the tech that did it and will probably try to specifically request him next time. I think his name was Chris. When he put the IV contrast in my arm didn't feel on fire at all! Of course I got my CD copy and ran home to review them myself. I was pretty amazed at how "normal" looking they looked! I'll have to put a progression of shots together sometime. To me, a more-or-less untrained eye, it looks like a lot of healing has gone on, which I guess explains part of my needing a million hours of sleep a night.
I really didn't want to go to a neurosurgeon, as I find I don't like their attitudes, so I asked the neurologist if I really had to, and she said I did. She said they're the best person to review the MRI. So that's pretty much all the appointment consisted of. Well, one and a half hours of waiting, with no magazine but "The Economist" and some travel brochure on the table to read, and then a 5 minute review of the MRI, a "looks good", and "okay, see you again next year."
I think maybe they should increase the number of "post operative care" classes new surgeons get in school.
The last appointment, or appointment set, was for my eye. I was supposed to see Dr L for my regular eye check early in November. However, about a week and a half before that I was at work and noticed my eye really bothering me. I went into the bathroom and looked and it was all terrible and red and I swore I saw a little "divot" in it. Another nurse looked and saw the "divot" too so I pretty much cried and assumed I had a corneal ulcer and worried all night until I could call in the morning.
Dr L saw me the same morning and instead of the normal "Still looks great! Keep up the good work!" It was more of a "hmm...." There was a thing in my eye, but it wasn't a ulcer - it's something called a "dellen". The way he explained it to me, the cornea is made up of layers that are normally kept moisturized so they're kind of 'spongy', and like a sponge, when they dry out they get harder and kind of shrink down, creating this kind of crater looking thing - the dellen.
If you're really interested, here's a neat video I found of an eye with a dellen. This is what I saw in my eye. (If you're creeped out by eyes, don't look - but there's no blood or anything.) While it's not an ulcer, it's also not good, and I'm pretty sure if left untreated could lead to worse issues like a corneal ulcer.
The problem is kind of three fold.
1) My left eye still doesn't really tear on it's own. I still do lots of Refresh Celluvisc drops in the day and eye ointment at night, but maybe I wasn't doing enough. I don't know. It's possible that since I put the drops in "as needed" and my over-exposed cornea is becoming less and less sensitive, I'm not able to tell when it's needed until it's really really needed. If that makes sense. That's just my guess, not anything expressly told to me by a professional.
2) Though the gold weight helps, my left eye still doesn't really blink well. It kind of 'twitches'. And when I go to close it there's still maybe a millimeter that's left open. Blinking helps to spread that tear film (or in my case, eye drop film) across everything. If I'm not blinking all the way, it's not getting spread all the way. The dellen was along the line where the tear film doesn't reach very much.
3) For some reason, I'm not even attempting to blink that often. In both eyes. Dr L observed me without my knowing it (Benjamin was in the room so he distracted with me with chit chatting with him. I didn't have my glasses on so I had no idea he was actually looking at my eyes.), and he said I only blink once or twice per minute. That's not normal. At least for adults. Babies only blink about that often, but adults are more in the 10-30 times per minute range.. at least in conversation. (Just did some interesting reading and found that blink rates are known to be different depending on the task, so you blink less when reading, for example. Makes sense.) Dr L said he doesn't know why that's happening.
What this means is, we've got to do more to protect my eye. So far we've got the gold weight, the punctal plug in the lower tear duct (so tears stay in my eye longer instead of draining through there), and the drops/ointment. Right off the bat Dr L went ahead and put a plug in the upper tear duct. So now there is no draining of tears at all (except down my cheek). He also referred me to another doc at U of MD.
I went to see the other doc last week. The good news is, when the resident did my exam she said the dellen wasn't there (Dr L had said, when I asked him, that they can resolve. Again, like a sponge, the cornea can re-wet and go back to normal. Later I read somewhere that this can happen within 24 hours.). I did have some "SPKs", which she wasn't impressed with, but I'm pretty sure that is still a change from my baseline. "SPK", I'm just now reading, stands for "Superficial punctate keratopathy". According to the Merck manual, these are "the death of small groups of cells on the surface of the eye". In an email from Dr L to the new Dr, Dr K, which he was nice enough to cc me on, it says I have "moderate central SPK". The resident told me these SPKs are along the 1mm where my eye doesn't close.
So the three options I was presented with were these:
1) Continue to use the drops and ointment, trying to use them more often, and see what happens.
2) Do something called a "lateral tarsorrhaphy", which is like stitching the outside corner of my eye closed so the tear film covers the injured area better.
3) Try a heavier gold weight.
#3 is pretty much out. I really don't want my eyelid sliced into multiple times, and sometimes the weight I have feels overly heavy to that thin skin, so I don't want it heavier.
I'm dancing between #1 and #2. I'm scheduled for the tarsorrhaphy with Dr K the wednesday after next, but I'm not convinced it's what's best. Initially when Dr K said it would probably help I was like "well if it'll help, let's do it!", and that's why I scheduled the appointment. But since then a few things have changed. First, I've noticed natural tearing in my left eye! It's not a lot, but it's there. I'm wondering if it'll be enough help to keep things okay. Second, I read more about the procedure.
Of course doing an 'image search' of what you're about to have done is never a good idea. So that scared me first of all. Then, I keep reading about how how 'rare' it is and about 'poor cosmetic outcome'. I know it'll make one eye look different from the other. On one side who cares since my face is already different from one side to the other. On the other side, do I really want to make it *more* "messed up"? Also, the 'rareness' of the procedure doesn't bother me so much from the standpoint of anything going wrong - I mean really it's a very minor thing. But, if it's so rare, like a last resort thing, then does it really need to be done now at the first sign of anything wrong?
I don't know. I'm going to have to call Dr L tomorrow to talk to him because I'm really fretting over this. I don't want to risk the health of my eye, but I just don't know if this is the time to be more conservative.
If anyone's interested, there's a description and graphics (drawings, not real creepy eyes) of the procedure here. It's just too late at night to type it all out now.
Monday, October 4, 2010
The Tattoo
This may not be my mom's favorite thing, but to commemorate the whole vestibular schwannoma journey I got a tattoo.
It's on my left ankle, the same side as my tumor, and is roughly 4.3cm, which is the average of the two tumor lengths noted on my operative report (it said the tumor was 5.5cm x 3.1cm at surgery).
I chose a labyrinth because I think it's a good representation of the whole experience. You go in one way, get spun all around, keep going, and end up coming out right where you went in.
This particular design I picked initially because it was the top rated amongst the friends I asked. Plus, it's a good representation of the massive dizziness that came along with surgery!
But also, it has a deeper meaning than other labyrinth designs. This particular one is a Chakravyuha, which is a defensive formation. According to Wikipedia, the king of all sources, "The formation is likened to a blooming lotus, since when viewed from the top, the warriors at each interleaving position would be in an increasingly tough position to fight."
It's good to remember that when you're at the heart of it all is when you need to be the toughest, so you can fight your way back out.
Credit to Charlie Foos at Read Street Tattoo in Baltimore!
Wednesday, September 22, 2010
The One Year Anniversary
One year ago sometime around this I was sleeping in an ICU.
Weird to think about.
Things are currently okay. I'll go with just okay.
I'm a heck of a lot better off than this time last year, that's for sure. But no where near perfect.
My head still hurts, at some level, almost constantly. A lot of people have told me they'd rather have any other pain than a headache. Try to imagine having a headache, all the time, for over a year. I'm not saying that for any kind of sympathy, I swear. Just, imagine how tired and grumpy you might be. I'm usually tired, and pretty low on patience, and despite my sweet exterior, pretty grumpy. I often think of the saying "I'm sick and tired of being sick and tired." I'm just tired of hurting.
Every once and awhile I'll take a motrin or tylenol, and sometimes it does enough to take the headache down to a regular level, but I hate to rely on those and further destroy my stomach lining and liver.
A couple weeks ago I headache that got worse and worse until I was squatting on the floor in tears. The kind that hurts bad enough that it feels like it's going to make you puke. I was close to going to the ER, but a friend got me some motrin, and that cut it down enough to make it through the night.
Mostly, I just try and tough it out.
There have been a few weird things going on like that that I've attributed to reaching all these "one year" milestones. You know, "psychosomatic" things. The headache episode was much like the one that took me to the ER in the first place to discover the tumor, and happened around that 'anniversary'. Just a week or two before that I had a week of nagging chest pain that eventually spontaneously resolved. Last week I had a recurring dream of being in a pre-op before another surgery. I'm thinking it's all in my head.
As much as I love the fall, I'll be happy when the new season passes.
My left ear, of course, is still deaf. Funny how before surgery I thought deaf meant no noise. Instead that constant "hiss" is always *always* there, driving me crazy. The single-sided deafness (which I refer to all the time as being "half deaf"), was one of my least concerns before surgery and, aside from the headaches, is actually one of the biggest annoyances now. It's hard to enjoy going out when you can't hear what's going on (or really, can hear it, but can't understand it). Sometimes it's even hard at work, or home, or anywhere understanding words coming from someone else's mouth is needed. Both "huh?" and the smile-and-nod routine are getting old. Some people even seem offended when they speak to me on my deaf side and I don't respond. Sorry guys, it bothers me, too.
I still haven't checked out any 'devices' for hearing. My right side seems overwhelmed with all the work as it is, and I don't know if something like a transear would help or only serve as more work for the right side of my head.
I still don't sleep on my left side. I can lay on it for a little bit now, which is an improvement. But, yeah, one whole year post op and I can't lay on that side of my head. At least my right hip has toughened up and doesn't hurt anymore.
My face is making the most improvement of almost anything.
At my last visit with Dr F, my House-Brackmann score was up to a 3/6, so I won't be requiring any surgical interventions on my face. Woohoo! I did get a referral to a facial specialist who put a few botox injections in my chin and outside corner of my left eye. The reason for these is that when the nerve heals it sometimes heals in unnatural ways, making the face combine movements it shouldn't (called synkinesis). So, for example, when I tried to smile my left eye would close. The botox works/worked to kind of block the nerve on one part (the eye closing part) while learning to improve the other part (the smiling part). I also went for a session of facial PT.
Though I think both things were really effective, I have no desire to start increasing my time at Johns Hopkins again. It's completely a mental thing (okay, and maybe a little bit an insurance thing). I also am just not ready to work on my face yet. I know what exercises I could/should be doing for my face, but it's hard to look in the mirror at your messed up face and try to force to to move and just watch as it doesn't.
None the less, I think you'll see the improvement (and hair growth!) in these 1 year pics.
I included the new 'pose', puckering, because it shows that there are still parts that are way off. Benjamin doesn't think my "teeth are upside down" anymore, though, and actually has commented awhile ago about it - "Mommy! Your teeth aren't on upside down anymore!" I expect continued improvement, but am highly doubtful that I'll ever be back to 'normal'. Or, if I am, I'm sure it will be at a much older age. I don't mean this offensively, but a 'normal' face at 50 doesn't exactly make up for a messed up face in your mid 20s, you know?
Speaking of hair growth - it's about chin level now (with bangs). Enough for a ponytail with lots of bobby pins on the sides. The interesting part is a spot in the back that was part of what was shaved bald for surgery, which has come back as a weird texture. It's kind of kinky while the rest of my hair is knaturally wavy. So, when it's down, it does this weird flip out thing in that spot. I'm hoping it will one day resolve itself.
My left eye is still doing well, according to Dr L. I still have the gold weight in my eye lid, and I still use Refresh Celluvisc drops a couple times during the day and a thick eye goop at night. It blinks somewhat now, but still doesn't tear. No one knows if the tearing will ever come back. I'm not really sure about the future of my eye, but for now I just keep using those products to keep it moisturized and continue to see Dr L to check it out every couple months.
I had had some concerns a little while back about seeing 'floaters' and light flashes, just in the left eye, but he checked everything out and my retina and all still looks good.
The next time I see him I do need to ask about photophobia though, because my reaction to light is getting worse and worse. Being in the sun without sunglasses is not just bothersome like before surgery, but now honestly hurts.
My balance seems to be fairly normal. There is the random occasion when I clip a corner of a wall. Or in big crowds I feel a little topsy turvy, but fine in the normal day-to-day. I wasn't able to tolerate watching fireworks on the 4th of July, though. Something about the combination of the firework going up and popping across the sky, combined with the smoke blowing across to the side, made me really dizzy and uneasy. I also have the occasional "whoa" moment, of course when standing up too fast or something, but I don't think that's tumor related.
Sometimes I'll have random bouts of nausea. Never enough to make me throw up, but just bothersome. I have no idea if they are tumor related, but probably not since when I brought it up to Dr F at my 6 month appointment is when I had my last MRI and it was clear.
I got my NF2 test back and it was negative. It wasn't that much of a relief, though, because it still only identifies something like 60-70% of cases. So there is the chance I have it and the test didn't catch it.
I've found another cafe au lait on Brodie so I think she's up to 5 now, but she doesn't fit any other criteria for NF1 so it's hard to say if it's a problem or just how her skin is. After this summer, though, I saw more on Benjamin, so I'm still nervous / suspicious. We next see the pediatric geneticist in March. The good thing is they don't seem to have any speech or learning delays, which I believe would be the major potential NF1 issue at this age.
I really have been bad lately with follow-up care for myself and I'll be the first to admit it. I've seen Dr L faithfully, since his office is easy to get to, I like him, and I'm afraid of my cornea melting. Otherwise, I've not been the best patient. I haven't seen Dr T (neurosurgeon) since the six week visit when he upset me. I saw Dr F up until maybe 9 months post op, and then didn't schedule my next appointment for December. Due to insurance difficulties and just plain not wanting to go there, I'm trying to get out of Hopkins.
I finally did what I've been meaning to do for months and months, though, and made an appointment with neurology at University of Maryland. I'm hoping they can help with the headaches, get me my 1 year MRI, and just generally help me be better about follow up care. I just want one doctor handling my case, not a handful. That appointment isn't until October, though.
My advice (at this point) for new vestibular schwannoma / acoustic neuroma patients:
Take a moment to breathe. Research diligently but don't get scared into reacting too quickly. There are many choices for treatment, and not all are the best for everyone. Talk to a couple different teams (not just doctors at the same place, but different doctors at different hospitals/centers) and see what they have to say. It wont really postpone your treatment much to do that, and it probably doesn't matter anyway because the average patient has plenty of time. Talk to other patients and find out their experiences. Make sure you're aware of your options, because they won't necessarily be presented to you.
There is a whole range of outcome experiences, from virtually no problem to really terrible, but almost no one dies. For me, no one could have prepared me for how hard this was going to be. Physically, yes, but especially emotionally. So heal at your own rate. Follow your own schedule. You might be just fine at 1 week, but don't worry if you're not, because you will be eventually. Just don't let anyone push one too far beyond what you can tolerate. That said, a certain amount of challenge helps.
Also, I highly recommend keeping some kind of a journal or blog or list of things that happened or something. There will be good days and bad days, and sometimes on days when you're upset about having trouble driving your car or something more 'advanced', you'll look back and remember when you were proud that you ate solid food, or walked without someone holding you up.
I'm not going to lie, it might be tougher than you think you can handle, but somehow, you will.
Not everything's been bad.
I'm doing fine at work. We've started a new home-school year with Benjamin, and, despite thinking after surgery that it would never be able to happen, I started Mommy-and-Me gymnastics with Brodie. Clearly, life goes on.
One of the best things in the last year has been discovering new hobbies that I really enjoy. I've gotten way into baking and am a pretty good amateur cake decorator if I may say so myself. (Or at least, as I say to myself, pretty good for a girl with one ear, one eye, and half a brain.) I've even had a couple paid cake decorating jobs. You can probably look for a cake blog starting sometime in the next year.
But of course, the best part has been knowing the love of friends and family and even strangers who have been there all the way. I got to celebrate my 25th birthday a couple weeks ago with many of them, something I wasn't sure I was going to be able to do, and it was really great.
Thanks everyone.
Friday, May 14, 2010
The May Update
As always, I'm probably due for an update. Here's a quick summary of what's happened since last post:
-I increased my schedule to full time, the same 3-twelve hour shifts I worked before.
-I had my NF2 blood draw done.
-I took Brodie to the opthamologist.
-I had a new MRI.
-I saw Dr L.
Work is going fine. I'm exhausted much of the time but I'm getting through, and hoping it'll only get easier. In the meantime, I sleep, a lot. Going back and forth between being up at night for night shift and being up in the day for the rest of life is not as easy as it was before. The other night, after a shift, I went to bed at 9:45, woke up at midnight, and couldn't get back to sleep again until around 5ish. Matt gives me lots of chances to sleep in and get naps!
Still haven't had a patient ask about my face, so that's cool. Really, it's not *that* bad anymore. You can tell something's not right about it, but it's not so obviously "dead". My problems with it are that even though I can move the left side some, the synkinesis is getting worse, it's still kind of stiff, and it doesn't move in concert with the right side so much. If I smile naturally, mostly just the right side smiles, though if I *think* about it I can get the left to go with it a little. It's just kind of aggravating, but whatever - it is what it is.
I had the bloodwork for the NF2 stuff drawn about 7-8 weeks ago (I can't remember exactly). No word on any results yet. I thought it was supposed to take 5-6 weeks, so I put in a call to the geneticist to see if they got anything.
I was wondering how I was going to get Brodie to sit still for her eye exam. As it turns out, the answer is "restrain her". I thought maybe they had special tools they used for kids, but it's pretty much the same. Still, I really liked Dr W and Brodie wasn't *that* upset about the whole thing. She does not have any lisch nodules, which is what they were looking for (an eye thingy that goes with NF1).
My third MRI (six month post op) was the least painful of them all. It seemed to go quicker. I guess because I know what to expect. They gave me a disk of my images which of course I looked at right away and scared the crap out of myself. As it turns out, my head wasn't straight in the machine so what I initially though was a giant tumor right in the front of my head was actually just my eye. At least, that's what I figured out the second time I scoured the images, after crying for an hour about how I was going to die.
I kept the CD for a good week or two, continuing to go over the images over and over again, as if I know what I'm looking at, until finally the NP at Dr F's office called and said "Are you going to mail us that CD?" Oops. I thought it was for me, so that I could drive myself crazy.
As it turns out, they said everything looks fine. Not "normal" of course (you can see where there's a big chunk missing, haha), but no new tumors or regrowth. When I get the disk back, I'll post some pictures.
While I'm sure it's great to have a 'clean' MRI, it still doesn't answer the question of why I still have daily headaches and waves of nausea. And I swear my skull feels different in my left temple, where headaches frequently start. But I guess we'll just follow up again in 6 more months. In regards to headaches, I've now had at least one almost everyday for about a year now. I'm not sure I'd know what a day was like without them.
I saw Dr L last week, and there's nothing new there. He spent a really long time with me to answer my multitude of questions. #1 - It won't mess my eyes up to work in areas with lots of computers and graphs (like L&D). In fact, he said that whole thing is a myth. #2 - My cornea still looks fine. #3 - I don't have any lisch nodules, either. I do have a nevus in my right iris, but that's just an eye freckle, and nothing to worry about. I didn't know people could even have eye freckles, but it doesn't surprise me that I have one now that I know it's a possibility. #4 - Everything else in my left eye looks good, too. I was worried because from time-to-time I have lots of 'floaters' and some white flashy lights in that eye, but apparently the retina and optic nerve look just fine. That's cool with me.
I mentioned needing a neurologist to go to for these headaches, and he referred me to someone, but I just called the office and that Dr is booked until September. I probably should have just made an appointment, as it'll probably take me that long to get motivated to call anyone else anyway, but September just seems to long away. I don't want to establish a relationship with someone who's that hard to get an appointment with, anyway.
So that's about all. Hopefully sometime today I'll get an update on the genetics business, since I'm always thinking I see new 'spots' on Brodie, and last night I definately found a new one - which brings the count to 4 (possible 5? I didn't see one that the dr said she saw) cafe au laits, 1 hypopigmentation spot, and 4 suspicious freckle type spots. :/
-I increased my schedule to full time, the same 3-twelve hour shifts I worked before.
-I had my NF2 blood draw done.
-I took Brodie to the opthamologist.
-I had a new MRI.
-I saw Dr L.
Work is going fine. I'm exhausted much of the time but I'm getting through, and hoping it'll only get easier. In the meantime, I sleep, a lot. Going back and forth between being up at night for night shift and being up in the day for the rest of life is not as easy as it was before. The other night, after a shift, I went to bed at 9:45, woke up at midnight, and couldn't get back to sleep again until around 5ish. Matt gives me lots of chances to sleep in and get naps!
Still haven't had a patient ask about my face, so that's cool. Really, it's not *that* bad anymore. You can tell something's not right about it, but it's not so obviously "dead". My problems with it are that even though I can move the left side some, the synkinesis is getting worse, it's still kind of stiff, and it doesn't move in concert with the right side so much. If I smile naturally, mostly just the right side smiles, though if I *think* about it I can get the left to go with it a little. It's just kind of aggravating, but whatever - it is what it is.
I had the bloodwork for the NF2 stuff drawn about 7-8 weeks ago (I can't remember exactly). No word on any results yet. I thought it was supposed to take 5-6 weeks, so I put in a call to the geneticist to see if they got anything.
I was wondering how I was going to get Brodie to sit still for her eye exam. As it turns out, the answer is "restrain her". I thought maybe they had special tools they used for kids, but it's pretty much the same. Still, I really liked Dr W and Brodie wasn't *that* upset about the whole thing. She does not have any lisch nodules, which is what they were looking for (an eye thingy that goes with NF1).
My third MRI (six month post op) was the least painful of them all. It seemed to go quicker. I guess because I know what to expect. They gave me a disk of my images which of course I looked at right away and scared the crap out of myself. As it turns out, my head wasn't straight in the machine so what I initially though was a giant tumor right in the front of my head was actually just my eye. At least, that's what I figured out the second time I scoured the images, after crying for an hour about how I was going to die.
I kept the CD for a good week or two, continuing to go over the images over and over again, as if I know what I'm looking at, until finally the NP at Dr F's office called and said "Are you going to mail us that CD?" Oops. I thought it was for me, so that I could drive myself crazy.
As it turns out, they said everything looks fine. Not "normal" of course (you can see where there's a big chunk missing, haha), but no new tumors or regrowth. When I get the disk back, I'll post some pictures.
While I'm sure it's great to have a 'clean' MRI, it still doesn't answer the question of why I still have daily headaches and waves of nausea. And I swear my skull feels different in my left temple, where headaches frequently start. But I guess we'll just follow up again in 6 more months. In regards to headaches, I've now had at least one almost everyday for about a year now. I'm not sure I'd know what a day was like without them.
I saw Dr L last week, and there's nothing new there. He spent a really long time with me to answer my multitude of questions. #1 - It won't mess my eyes up to work in areas with lots of computers and graphs (like L&D). In fact, he said that whole thing is a myth. #2 - My cornea still looks fine. #3 - I don't have any lisch nodules, either. I do have a nevus in my right iris, but that's just an eye freckle, and nothing to worry about. I didn't know people could even have eye freckles, but it doesn't surprise me that I have one now that I know it's a possibility. #4 - Everything else in my left eye looks good, too. I was worried because from time-to-time I have lots of 'floaters' and some white flashy lights in that eye, but apparently the retina and optic nerve look just fine. That's cool with me.
I mentioned needing a neurologist to go to for these headaches, and he referred me to someone, but I just called the office and that Dr is booked until September. I probably should have just made an appointment, as it'll probably take me that long to get motivated to call anyone else anyway, but September just seems to long away. I don't want to establish a relationship with someone who's that hard to get an appointment with, anyway.
So that's about all. Hopefully sometime today I'll get an update on the genetics business, since I'm always thinking I see new 'spots' on Brodie, and last night I definately found a new one - which brings the count to 4 (possible 5? I didn't see one that the dr said she saw) cafe au laits, 1 hypopigmentation spot, and 4 suspicious freckle type spots. :/
Monday, March 22, 2010
Six Months Post-Op
Happy Six Months Post-Op to Me!
Check that out, it almost looks like my face isn't messed up! It still is, but at least it's not as obvious now. I've had people ask if I had more surgery (like to fix my face) and people who don't know me not automatically know that I must of had something mess with my face in the first place. I mean, it's not perfect. There's still something very 'off' about it. But I'll take my new House-Brackmann score of 3-4/6 over 6/6 any day.I saw Dr F and Dr S (ENTs) last week, and they were happy with the progress. No reanimation surgery for me! They said if they had done reanimation surgery, this is about as much 'recovery' as I ever would have gotten, but since the nerve is (miraculously) recovering on it's own, I can expect further improvement throughout the year.I do have some synkinesis (involuntary movements that go along with voluntary movements, as a result of mis-wiring of a nerve) starting, where when I blink the left corner of my mouth goes up. Nothing I can do about it, and that's how it will always be. It's hardly noticeable, but look for it next time you see me, because it's kind of funny / neat.
For comparison to before, here's the six month 'face face', smile, and eye closing.
My left eye is still doing well. Dr L (corneal specialist) is still amazed with how good my cornea looks when considering how much is it exposed. That eye still doesn't really blink, and for all intents and purposes as far as it's concerned I'm still totally paralyzed on that side. Dr L thinks it will improve, though. He said if he and Dr D (the surgeon who did the gold weight) hadn't thought it would improve, they would have just sewn it shut it the first place. Awesome. Target still enjoys getting about $20/week in sales of eye products to me.
Headaches are still there but seem to have 'leveled off'. I pretty much have a constant pain level 2-3/10 headache that never goes away, ever. Then about 3ish times a week it goes up to 5/10, and that's when I usually take something. I was up to 1000mg tylenol + 800 mg motrin taken together and it wasn't doing anything (except killing my liver and stomach lining) so now I take an Excedrin Migraine, and it seems to help enough that I get back to my normal 2/10 pain state. About once a week or week and a half I get a real 7-8/10 killer headache that makes me want to cry. I pretty much have to attempt to fall asleep when that happens. (Ps - On my pain scale, acute appendicitis = 8/10, childbirth = 9/10, and there will never be a 10/10 while I'm conscious.)
In the last three weeks, I've been nauseated on and off all day long. In the last week and a half, I've had increased dizziness and imbalance, clipping the walls, stumbling, and feeling weird when laying down.
I mentioned all this to Dr F, and he did his normal battery of tests and isn't really sure what's causing it all. He wrote me for another MRI, which I will get on Thursday. He and Dr S gave me a worksheet of neck stretches to try and see if they help the headaches. Apparently there is a theory that the disected neck muscles, when reattaching to your head, pull on head coverings and things they wouldn't/shouldn't naturally, causing headaches. So the hope is that these stretches reduce those adhering spots and therefore the headaches. We'll see. Of course my fear is that it's really another tumor causing all of this, but it's probably just a bunch of related things. either way, the MRI is coming up.
I got my lab slip for the neurofibromatosis testing, so hopefully I can get that done this week, too.
Despite the headaches, my mood has been much better. Going back to work has helped. I've finished "reorientation" and last week worked my first 12 hour shift. Things are going fine so far (unless someone is making complaints behind my back that I'm not aware of..) and next month I should be back to my regular full time schedule.
My hearing is what it is. Gone on the left and nothing I can really do. At home it's not much of a big deal, but when I'm out and can't control which side of me people are on it can be a problem. I've tried to warn most people at work that if they talk to me and I don't answer it might be because I honestly never heard them, not because I'm being mean. Also, places where there's a lot of noise/conversation around are even more of an issue than they used to be. I want to learn lip reading. That would be a helpful skill.
The options for single-sided deafness (at least the kind I have where the nerve is just dead), are mostly bone-conduction aids. The one most recommended is the BAHA, which works through a surgically implanted titanium piece with a sound processor attached. I really really don't want anymore surgery to that same site, especially since it's still tender. I can't even sleep on my left side yet. So for now, the BAHA is out.
There's also something called the CROS which needs two hearing-aids to take the sound going into the 'bad' ear and send it to the 'good' one. I'm not a huge fan of that idea, either, because I've read of people feeling like then their 'good' ear was muffled from the aid in it.
A somewhat new thing is the Transear, which is what I want but not many people seem to offer it. It works on bone conduction but is just a piece that goes in one ear. I need to find an audiologist who will do it. Add that to my list of doctors appointments that need to be made.
My tinnitus sometimes drives me crazy but I'm told it should subside somewhat over my lifetime. It's basically like a constant hissing/white noise in my left ear. It never, ever stops. They say that it's more tolerable when there is background noises to drown it out, which is somewhat true, but also sometimes it just gets louder when people are talking to me. It's best to just try to ignore it. U of MD Medical Center has a tinnitus program I may check out at some time.
I'm doing pretty much everything that I was before surgery. When Matt's at school I can confidently drive the kids and myself to the park and to lunch and to the store. Hopefully this week's tests will go okay and this blog will be coming to a close.
Check that out, it almost looks like my face isn't messed up! It still is, but at least it's not as obvious now. I've had people ask if I had more surgery (like to fix my face) and people who don't know me not automatically know that I must of had something mess with my face in the first place. I mean, it's not perfect. There's still something very 'off' about it. But I'll take my new House-Brackmann score of 3-4/6 over 6/6 any day.I saw Dr F and Dr S (ENTs) last week, and they were happy with the progress. No reanimation surgery for me! They said if they had done reanimation surgery, this is about as much 'recovery' as I ever would have gotten, but since the nerve is (miraculously) recovering on it's own, I can expect further improvement throughout the year.I do have some synkinesis (involuntary movements that go along with voluntary movements, as a result of mis-wiring of a nerve) starting, where when I blink the left corner of my mouth goes up. Nothing I can do about it, and that's how it will always be. It's hardly noticeable, but look for it next time you see me, because it's kind of funny / neat.
For comparison to before, here's the six month 'face face', smile, and eye closing.
My left eye is still doing well. Dr L (corneal specialist) is still amazed with how good my cornea looks when considering how much is it exposed. That eye still doesn't really blink, and for all intents and purposes as far as it's concerned I'm still totally paralyzed on that side. Dr L thinks it will improve, though. He said if he and Dr D (the surgeon who did the gold weight) hadn't thought it would improve, they would have just sewn it shut it the first place. Awesome. Target still enjoys getting about $20/week in sales of eye products to me.
Headaches are still there but seem to have 'leveled off'. I pretty much have a constant pain level 2-3/10 headache that never goes away, ever. Then about 3ish times a week it goes up to 5/10, and that's when I usually take something. I was up to 1000mg tylenol + 800 mg motrin taken together and it wasn't doing anything (except killing my liver and stomach lining) so now I take an Excedrin Migraine, and it seems to help enough that I get back to my normal 2/10 pain state. About once a week or week and a half I get a real 7-8/10 killer headache that makes me want to cry. I pretty much have to attempt to fall asleep when that happens. (Ps - On my pain scale, acute appendicitis = 8/10, childbirth = 9/10, and there will never be a 10/10 while I'm conscious.)
In the last three weeks, I've been nauseated on and off all day long. In the last week and a half, I've had increased dizziness and imbalance, clipping the walls, stumbling, and feeling weird when laying down.
I mentioned all this to Dr F, and he did his normal battery of tests and isn't really sure what's causing it all. He wrote me for another MRI, which I will get on Thursday. He and Dr S gave me a worksheet of neck stretches to try and see if they help the headaches. Apparently there is a theory that the disected neck muscles, when reattaching to your head, pull on head coverings and things they wouldn't/shouldn't naturally, causing headaches. So the hope is that these stretches reduce those adhering spots and therefore the headaches. We'll see. Of course my fear is that it's really another tumor causing all of this, but it's probably just a bunch of related things. either way, the MRI is coming up.
I got my lab slip for the neurofibromatosis testing, so hopefully I can get that done this week, too.
Despite the headaches, my mood has been much better. Going back to work has helped. I've finished "reorientation" and last week worked my first 12 hour shift. Things are going fine so far (unless someone is making complaints behind my back that I'm not aware of..) and next month I should be back to my regular full time schedule.
My hearing is what it is. Gone on the left and nothing I can really do. At home it's not much of a big deal, but when I'm out and can't control which side of me people are on it can be a problem. I've tried to warn most people at work that if they talk to me and I don't answer it might be because I honestly never heard them, not because I'm being mean. Also, places where there's a lot of noise/conversation around are even more of an issue than they used to be. I want to learn lip reading. That would be a helpful skill.
The options for single-sided deafness (at least the kind I have where the nerve is just dead), are mostly bone-conduction aids. The one most recommended is the BAHA, which works through a surgically implanted titanium piece with a sound processor attached. I really really don't want anymore surgery to that same site, especially since it's still tender. I can't even sleep on my left side yet. So for now, the BAHA is out.
There's also something called the CROS which needs two hearing-aids to take the sound going into the 'bad' ear and send it to the 'good' one. I'm not a huge fan of that idea, either, because I've read of people feeling like then their 'good' ear was muffled from the aid in it.
A somewhat new thing is the Transear, which is what I want but not many people seem to offer it. It works on bone conduction but is just a piece that goes in one ear. I need to find an audiologist who will do it. Add that to my list of doctors appointments that need to be made.
My tinnitus sometimes drives me crazy but I'm told it should subside somewhat over my lifetime. It's basically like a constant hissing/white noise in my left ear. It never, ever stops. They say that it's more tolerable when there is background noises to drown it out, which is somewhat true, but also sometimes it just gets louder when people are talking to me. It's best to just try to ignore it. U of MD Medical Center has a tinnitus program I may check out at some time.
I'm doing pretty much everything that I was before surgery. When Matt's at school I can confidently drive the kids and myself to the park and to lunch and to the store. Hopefully this week's tests will go okay and this blog will be coming to a close.
Thursday, March 11, 2010
The Saga Continues
At almost 6 months postop, when finally I am almost back to life as it was "before", there is the possibility that this may just have been the beginning.
Brodie, my 18 month old daughter, was referred to pediatric genetics by her pediatrician because she has a number of "cafe au lait spots"- those kind of extra-large, flat, freckle type spots. She was only born with one that I know of, but then over the months I've discovered two more. As it turns out, having more than 5 of these of a certain size is a diagnostic criteria for neurofibromatosis 1 (NF1). Having more than one vestibular schwannoma is a diagnostic criteria for neurofibromatosis 2 (NF 2). Additionally, I have a family history two generations up of multiple meningioma tumors in one family member, which could also be related to NF 2.
So today I packed up the diaper bag full of toys and snacks and juice and took the kids into the city to see the genetics people. The doctor checked out all of Brodie's skin and found a number of spots, 4 of which fit the criteria for a spot of concern. So, not quite enough to be diagnosed with NF 1... yet... but kind of on the borderline. For me, I only had the one tumor... so far... so I don't quite meet the criteria for NF 2 ... yet. I'm only 24, so there's plenty of time for more tumors to grow. There is enough history and borderline things that they said "Do we believe in our heart of hearts that [your family member's] tumors and then yours are just coincidence? No."
I asked about the relationship between NF1 and NF2, if any, and basically there is none. They are caused by mutations (specifically, deletions of tumor suppressor genes) on totally separate genes. However, the symptoms can kind of cross. So, though the diagnostic criteria for NF1 includes more than 5 cafe au lait spots of a certain size, and the diagnotic criteria for NF2 includes bilateral vestibular schwannomas, people with NF1 can get schwannomas and people with NF2 can get cafe au lait spots.
Does that make sense? I think that's how they explained it to me. I wish now that I had had someone else come with me to take notes and ask questions, as it was a bit much for me to absorb.. especially while Brodie rearranged the chairs in the room and Benjamin tapped me on the shoulder to ask "Guess what's behind my back?" But, since I avoided making the appointment for two weeks (if I just never do it we never have to find out something's wrong, right?), and then they had a last-minute-cancellation next-day appointment open up when I called, there wasn't a lot of time to plan these things.
Anyway, the next step is for me to get DNA testing. They kind of offered it as a choice, but it's something I definitely want to do. Especially because there is a whole generation that hasn't shown any symptoms so far, that may then need to get checked out if I do test positive for something. And of course we'll then test the kids if I'm positive for anything. If I'm not, then we'll jsut keep bing on the look out for weird things. The test is about 75% specific. Before I do the testing, though, I need to call insurance, because it's $1260 if paid out-of-pocket.
We also need to get my records from Dr L to see if I'm checked out for cataracts (also related to NF) and take Brodie to an eye doctor for the same reason. There's some sort of eye nodule that if she has it, it will be enough to diagnose her with NF1.
*sigh* I've said all along that I'll be okay as long as the kids are healthy. I don't even want to think about my babies in an MRI machine. I'm guessing they'd have to sedate them? Ugh, let's not think about it until / if we have to.
Brodie, my 18 month old daughter, was referred to pediatric genetics by her pediatrician because she has a number of "cafe au lait spots"- those kind of extra-large, flat, freckle type spots. She was only born with one that I know of, but then over the months I've discovered two more. As it turns out, having more than 5 of these of a certain size is a diagnostic criteria for neurofibromatosis 1 (NF1). Having more than one vestibular schwannoma is a diagnostic criteria for neurofibromatosis 2 (NF 2). Additionally, I have a family history two generations up of multiple meningioma tumors in one family member, which could also be related to NF 2.
So today I packed up the diaper bag full of toys and snacks and juice and took the kids into the city to see the genetics people. The doctor checked out all of Brodie's skin and found a number of spots, 4 of which fit the criteria for a spot of concern. So, not quite enough to be diagnosed with NF 1... yet... but kind of on the borderline. For me, I only had the one tumor... so far... so I don't quite meet the criteria for NF 2 ... yet. I'm only 24, so there's plenty of time for more tumors to grow. There is enough history and borderline things that they said "Do we believe in our heart of hearts that [your family member's] tumors and then yours are just coincidence? No."
I asked about the relationship between NF1 and NF2, if any, and basically there is none. They are caused by mutations (specifically, deletions of tumor suppressor genes) on totally separate genes. However, the symptoms can kind of cross. So, though the diagnostic criteria for NF1 includes more than 5 cafe au lait spots of a certain size, and the diagnotic criteria for NF2 includes bilateral vestibular schwannomas, people with NF1 can get schwannomas and people with NF2 can get cafe au lait spots.
Does that make sense? I think that's how they explained it to me. I wish now that I had had someone else come with me to take notes and ask questions, as it was a bit much for me to absorb.. especially while Brodie rearranged the chairs in the room and Benjamin tapped me on the shoulder to ask "Guess what's behind my back?" But, since I avoided making the appointment for two weeks (if I just never do it we never have to find out something's wrong, right?), and then they had a last-minute-cancellation next-day appointment open up when I called, there wasn't a lot of time to plan these things.
Anyway, the next step is for me to get DNA testing. They kind of offered it as a choice, but it's something I definitely want to do. Especially because there is a whole generation that hasn't shown any symptoms so far, that may then need to get checked out if I do test positive for something. And of course we'll then test the kids if I'm positive for anything. If I'm not, then we'll jsut keep bing on the look out for weird things. The test is about 75% specific. Before I do the testing, though, I need to call insurance, because it's $1260 if paid out-of-pocket.
We also need to get my records from Dr L to see if I'm checked out for cataracts (also related to NF) and take Brodie to an eye doctor for the same reason. There's some sort of eye nodule that if she has it, it will be enough to diagnose her with NF1.
*sigh* I've said all along that I'll be okay as long as the kids are healthy. I don't even want to think about my babies in an MRI machine. I'm guessing they'd have to sedate them? Ugh, let's not think about it until / if we have to.
Tuesday, February 16, 2010
4.5 Months Post Op
I am way overdue for an update. Please know that my absence is a good thing, as it means I'm busy with more important things! In fact, I'm finally at a point where I couldn't tell you how many weeks and days I am out from surgery. There's no more constant ticker going on in my head. it's taken me almost 5 months (this number I know), but things are really shaping up now.
I do have 4 month face pictures, but at this point I might as well save them to do along with the 5 month (isn't everyone excited to see my tiny snarl/smile thing???).
Things I haven't mentioned in the last month are pretty big. First, I went back to Speech Language Pathology for a retest of my Executive Function, and was found to have improved a lot! Enough to be labeled "normal" again! Woohoo! She, still somewhat reluctantly, said she would advocate for my return to work if that's what I wanted. I did want to go back to work, so we talked about strategies for dealing with the things that would be hard, and I said a final "see ya!" to the rehab hospital.
A week later I went to see a second neurosurgeon for a 'second opinion'. Yes, I finally got that schedule after about a month or month and a half. At first it didn't go so swimmingly. It started out like this:
"Are you the patient?"
"Yes"
"Well what do you want?" (okay those might not have been the exact words, but might as well have been)
"Well I'm here for a couple reasons. I had surgery on September 22nd and I wanted a second opinion on some things, one of which is my short term disability.."
(cutting me off) "I don't do disability. I'm a surgeon. What else do you want?"
At that point I pretty much shut down and went into 'give up' mode and tried (unsuccessfully) not to cry. Thankfully, my mom was there and found a good time to steer him back towards that issue and he allowed us to finish explaining why the whole surgeon and disability thing went together. Once everything was explained, and the tears were streaming out of my one good eye, he seemed to feel sorry for me and listened better. He couldn't really make a recommendation about the prior two months I had been out since he didn't know me then, but implied that if these other medical professionals hadn't thought I was ready to return, and I didn't think I was either, then I wasn't. As it turns out, my primary physician told me that Dr T said the same thing... in mid-January when she finally talked to him.
Anyway, most of my other questions (what's your opinion on facial nerve recovery? etc) weren't really answered. It was all "I don't know, you'd have to talk to Dr T." I guess he doesn't know about 'second opinions'. But he did recommend, that if my Executive Function was better, I could return to work part time and work back up to full time. Woohoo! I marched myself right into Employee Health straight away to get the ball moving, and started back the next week!
Another magical thing that happened - the disability firm decided to accept my primary care physician's recommendation regarding being out of work for December and January, so it finally got approved! And, as it turns out, those people are much more friendly to talk to on the phone when they hear you're going back to work. As if I *wanted* to be out, and as if the disability payments came out of *their* paycheck. Ugh. So glad to be done with that.
So I've been back at work two weeks now. I'm only working two eight-hour shifts per week, then next month I'll bump it up to two twelve-hour shifts, and then finally to three twelve-hour shifts. I work from 11pm-7am, so it's still pretty tiring, and it takes me longer to 'recover' and go back to a 'day schedule' in between shifts, but it's good to be back. Everyone I work with is wonderful and has made me feel so welcomed. So far no patients have mentioned anything about my face. I was worried I would feel lost and confused, like I did from time-to-time at home the first few months, but I haven't. At least, I'm fine on the unit.. but I usually forget where I've parked my car by the end of the shift! Oh well! Actually, the hardest part is driving there, since night driving is still complicated, and especially in the city with all the lights! Depth perception is an issue, but I go slow and sometimes make unnecessary circles around the block to go into alternative entrances to the parking garage when I'm not so sure about the first one.
As a fun story, for my second shift back I drove in the snow to get there and then the [first] blizzard happened and I got stuck there! So, I have worked one 12 hour shift when I was having to be there anyway. For the second blizzard, though, I wasn't able to make it in.
The second neurosurgeon also recommended going back to some sort of [emotional] therapy, and possibly getting on antidepressants, but I haven't done it yet. I just can't think about one more thing in the schedule right now. I'm staying really busy, and for the most part am fine. Having a little movement in my face has really helped! But, I do think I might have some post-traumatic-stress issues. I know the best way to deal with that is to keep talking about it, so that's what I do. The reason I think I might have some PTSD type of stuff is because when I sent to Hopkins to pick up my MRI before my dr's visit, I almost had a panic attack. It was really anxiety producing to see those hallways and the parking lot and remember the feeling of sitting in a wheelchair, dizzy and confused and just feeling terrible, in those same spots.
Sometimes I feel it at work, too, in the hospital halls, thinking about trying to struggle around the halls with two people holding me up. It makes me want to cry - a weird kind of happy and sad cry - but I haven't broken down there yet. It helps that there are a lot of other tough survivors who work with me.
Tonight I took the kids to Target, all by myself, and thought nothing of it. When I was putting them in the shopping cart I realized the hugeness of this little task, and reminded myself not to start taking these things for granted again.
I got my medical records in the mail today.. finally. There were a lot of questions I had hoped to get answered with them. Some were, some weren't. Firstly, the actual size of my tumor was bigger than I thought. The actual size was not 4.8cmx2.9cm - it was 5.5cmx3.1cm. Apparently it was putting so much pressure on my cerebellum, that when they opened my head it tried to 'herniate' out (aka pop out!), and that's why they had to remove a piece of it. I feel really lucky to be okay, even more so after reading the report, because the tumor was stuck to a lot of nerves and major blood vessels, not just the hearing, facial, and vestibular nerves.
I knew that my facial nerve was anatomically intact, but I didn't know that it didn't stimulate at the end of surgery. That means the movement I'm getting back now is even more miraculous. (Check the link on management of facial paralysis after intracranial surgery.)
Not answered, were the questions of "WTH is the deal with me apparently moving during surgery?" and "Did I get a blood transfusion / why was I charged for transfusion services?"
The only bad thing right now is headaches. They've still been getting worse, and I'm still being told that headaches are "normal" right now. I'm almost never headache-free, but I do a pretty good job of toughing through it most of the time. About once or twice a week though, largely depending on the weather, I get a killer headache that I can't pretend isn't happening. I get sick to my stomach and sometimes start crying. This is a girl who birthed two kids in her own bed - I'm not particularly weak when it comes to pain.. usually. I see Dr F in March, and I expect to get some answer other than "it's normal". This is not normal. Expected, perhaps, but not normal. After how far I've come, I'm not letting something like a headache take me down. I want answers. For now, though, everyone with stock in CocaCola is safe again, as I'm back to my daily (or twice daily) habit.
And for a somewhat funny story..
Sometimes I have some double vision, mostly on things with high contrast, like black writing on white. I was making a cake the other day, and read the directions I wrote down as "1 1/4 c cocoa powder". I was like "that sounds like a lot, but okay!" and dumped it all in there. Then when I went to mix it up, there wasn't enough wet for the dry and it just didn't make cake batter. So I looked again and there was only one "1" - it said "1/4 c cocoa powder". Oops. I did manage to fix the cake, and we did manage to eat the whole thing, but I used up a lot of cocoa and it was pretty rich!
I do have 4 month face pictures, but at this point I might as well save them to do along with the 5 month (isn't everyone excited to see my tiny snarl/smile thing???).
Things I haven't mentioned in the last month are pretty big. First, I went back to Speech Language Pathology for a retest of my Executive Function, and was found to have improved a lot! Enough to be labeled "normal" again! Woohoo! She, still somewhat reluctantly, said she would advocate for my return to work if that's what I wanted. I did want to go back to work, so we talked about strategies for dealing with the things that would be hard, and I said a final "see ya!" to the rehab hospital.
A week later I went to see a second neurosurgeon for a 'second opinion'. Yes, I finally got that schedule after about a month or month and a half. At first it didn't go so swimmingly. It started out like this:
"Are you the patient?"
"Yes"
"Well what do you want?" (okay those might not have been the exact words, but might as well have been)
"Well I'm here for a couple reasons. I had surgery on September 22nd and I wanted a second opinion on some things, one of which is my short term disability.."
(cutting me off) "I don't do disability. I'm a surgeon. What else do you want?"
At that point I pretty much shut down and went into 'give up' mode and tried (unsuccessfully) not to cry. Thankfully, my mom was there and found a good time to steer him back towards that issue and he allowed us to finish explaining why the whole surgeon and disability thing went together. Once everything was explained, and the tears were streaming out of my one good eye, he seemed to feel sorry for me and listened better. He couldn't really make a recommendation about the prior two months I had been out since he didn't know me then, but implied that if these other medical professionals hadn't thought I was ready to return, and I didn't think I was either, then I wasn't. As it turns out, my primary physician told me that Dr T said the same thing... in mid-January when she finally talked to him.
Anyway, most of my other questions (what's your opinion on facial nerve recovery? etc) weren't really answered. It was all "I don't know, you'd have to talk to Dr T." I guess he doesn't know about 'second opinions'. But he did recommend, that if my Executive Function was better, I could return to work part time and work back up to full time. Woohoo! I marched myself right into Employee Health straight away to get the ball moving, and started back the next week!
Another magical thing that happened - the disability firm decided to accept my primary care physician's recommendation regarding being out of work for December and January, so it finally got approved! And, as it turns out, those people are much more friendly to talk to on the phone when they hear you're going back to work. As if I *wanted* to be out, and as if the disability payments came out of *their* paycheck. Ugh. So glad to be done with that.
So I've been back at work two weeks now. I'm only working two eight-hour shifts per week, then next month I'll bump it up to two twelve-hour shifts, and then finally to three twelve-hour shifts. I work from 11pm-7am, so it's still pretty tiring, and it takes me longer to 'recover' and go back to a 'day schedule' in between shifts, but it's good to be back. Everyone I work with is wonderful and has made me feel so welcomed. So far no patients have mentioned anything about my face. I was worried I would feel lost and confused, like I did from time-to-time at home the first few months, but I haven't. At least, I'm fine on the unit.. but I usually forget where I've parked my car by the end of the shift! Oh well! Actually, the hardest part is driving there, since night driving is still complicated, and especially in the city with all the lights! Depth perception is an issue, but I go slow and sometimes make unnecessary circles around the block to go into alternative entrances to the parking garage when I'm not so sure about the first one.
As a fun story, for my second shift back I drove in the snow to get there and then the [first] blizzard happened and I got stuck there! So, I have worked one 12 hour shift when I was having to be there anyway. For the second blizzard, though, I wasn't able to make it in.
The second neurosurgeon also recommended going back to some sort of [emotional] therapy, and possibly getting on antidepressants, but I haven't done it yet. I just can't think about one more thing in the schedule right now. I'm staying really busy, and for the most part am fine. Having a little movement in my face has really helped! But, I do think I might have some post-traumatic-stress issues. I know the best way to deal with that is to keep talking about it, so that's what I do. The reason I think I might have some PTSD type of stuff is because when I sent to Hopkins to pick up my MRI before my dr's visit, I almost had a panic attack. It was really anxiety producing to see those hallways and the parking lot and remember the feeling of sitting in a wheelchair, dizzy and confused and just feeling terrible, in those same spots.
Sometimes I feel it at work, too, in the hospital halls, thinking about trying to struggle around the halls with two people holding me up. It makes me want to cry - a weird kind of happy and sad cry - but I haven't broken down there yet. It helps that there are a lot of other tough survivors who work with me.
Tonight I took the kids to Target, all by myself, and thought nothing of it. When I was putting them in the shopping cart I realized the hugeness of this little task, and reminded myself not to start taking these things for granted again.
I got my medical records in the mail today.. finally. There were a lot of questions I had hoped to get answered with them. Some were, some weren't. Firstly, the actual size of my tumor was bigger than I thought. The actual size was not 4.8cmx2.9cm - it was 5.5cmx3.1cm. Apparently it was putting so much pressure on my cerebellum, that when they opened my head it tried to 'herniate' out (aka pop out!), and that's why they had to remove a piece of it. I feel really lucky to be okay, even more so after reading the report, because the tumor was stuck to a lot of nerves and major blood vessels, not just the hearing, facial, and vestibular nerves.
I knew that my facial nerve was anatomically intact, but I didn't know that it didn't stimulate at the end of surgery. That means the movement I'm getting back now is even more miraculous. (Check the link on management of facial paralysis after intracranial surgery.)
Not answered, were the questions of "WTH is the deal with me apparently moving during surgery?" and "Did I get a blood transfusion / why was I charged for transfusion services?"
The only bad thing right now is headaches. They've still been getting worse, and I'm still being told that headaches are "normal" right now. I'm almost never headache-free, but I do a pretty good job of toughing through it most of the time. About once or twice a week though, largely depending on the weather, I get a killer headache that I can't pretend isn't happening. I get sick to my stomach and sometimes start crying. This is a girl who birthed two kids in her own bed - I'm not particularly weak when it comes to pain.. usually. I see Dr F in March, and I expect to get some answer other than "it's normal". This is not normal. Expected, perhaps, but not normal. After how far I've come, I'm not letting something like a headache take me down. I want answers. For now, though, everyone with stock in CocaCola is safe again, as I'm back to my daily (or twice daily) habit.
And for a somewhat funny story..
Sometimes I have some double vision, mostly on things with high contrast, like black writing on white. I was making a cake the other day, and read the directions I wrote down as "1 1/4 c cocoa powder". I was like "that sounds like a lot, but okay!" and dumped it all in there. Then when I went to mix it up, there wasn't enough wet for the dry and it just didn't make cake batter. So I looked again and there was only one "1" - it said "1/4 c cocoa powder". Oops. I did manage to fix the cake, and we did manage to eat the whole thing, but I used up a lot of cocoa and it was pretty rich!
Wednesday, February 3, 2010
19 Weeks Post Op (The First Movement)
I am in major need of an update post. So much has happened in the last two weeks it's crazy. But I only have a second, so I'll post the craziest news of all.
Is anyone familiar with the Winnie the Pooh movie where Pooh gets stuck in Rabbit's doorway? When Pooh finally gets skinny enough to 'budge' out the door Rabbit is practically delirious with excitement and yells "He bidged! He badged! He budged!"
Well, that's how I feel right now. About 10 minutes ago I was just looking in the mirror, and tried to do a closed move smile and the left corner of my mouth moved! Matt even saw it!
Woohoo!
Is anyone familiar with the Winnie the Pooh movie where Pooh gets stuck in Rabbit's doorway? When Pooh finally gets skinny enough to 'budge' out the door Rabbit is practically delirious with excitement and yells "He bidged! He badged! He budged!"
Well, that's how I feel right now. About 10 minutes ago I was just looking in the mirror, and tried to do a closed move smile and the left corner of my mouth moved! Matt even saw it!
Woohoo!
Friday, January 15, 2010
16.5 Weeks Post-Op (The Second Mile)
Some awesome things I did in the last week / week and a half:
-took Brodie to Target with me, alone! I didn't brave having both kids, but I did it with the baby! I remember the first time we went to Target post-op, I was so overwhelmed and dizzy I thought if I didn't get hit by a car in the parking lot I would probably fall over in the aisle and start puking everywhere. So, it's a big improvement. No longer crashing shopping carts into everything, either. It's still disorienting to be in less-often-visited busy stores (Ikea), even without kids, but with our weekly trips to Target for eye drops, I've got that one down.
-Took myself to the grocery store and did all the shopping. Didn't do it with kids, but didn't have Matt their with me, either. It's nice to know that when he's sick and can't go out with me we won't have to just starve to death.
-Drove the bigger car (the one I don't like to drive) on roads I'm not really familiar with and in a busy parking lot, successfully.
-Ran a mile. Ran! A mile! I haven't done that since... 5th grade? And haven't done it willingly probably ever. I am not a runner, but I'm making a 5k one of my goals. Being afraid I was going to die made me realize a little bit that it would be a shame for a perfectly good body to die off without having ever really been 'used'. I've never been overweight, but I'm not really 'fit', either. Now I work out (Wii Fit or yoga tape or boot camp tape or something) 1/2 hour to an hour about 6 times a week.
Unfortunately we've had some colds going through the house in the last week (it's been COLD here), so I haven't gone to my parent's to run on the treadmill 3x this week like I wanted to.
Hopefully this all helps to increase my endurance for going back to night shift!
Some not so great things about this week:
-I'm pretty much giving up on short-term disability. I'm making phone calls every day and not getting anywhere with scheduling appointments. I can't even get in contact with my general practitioner to see if she's talked to Dr T. And I've been working at making a second-opinion neurosurgeon visit for almost a month now. Every bit of working with the healthcare system from home has been a disaster from day one, the monday after the ER visit. I can't express enough just how angry I am over it all and just how DONE I am. I'm sad for other people in similar situations, because if a NURSE who is somewhat okay (at least not terminal) can't figure out case managing herself through this mess, how is the everyday really sick guy supposed to do it?
-Headaches. They're baaaaackk! Well, they've never really been gone, but they've been becoming more and more intolerable. Not so much this week. I even gave up and took one of my post-op pain pills the other day. It worked, thank goodness, but I can't take those and drive, or work. Yesterday I just sucked it up and dealt with it since I thought I might have to driev at some point in the day. Today is starting out the same. Hopefully I can get into the new neurosurgeon soon, and I can get some answers. I can't help but be scared of another tumor, though rationally I know it's unlikely.
Next week I have my follow-up testing with SLP to look forward to. I'm really hoping I test better, since I'm finally feeling better (at least cognitively), and want to get back to work.
-took Brodie to Target with me, alone! I didn't brave having both kids, but I did it with the baby! I remember the first time we went to Target post-op, I was so overwhelmed and dizzy I thought if I didn't get hit by a car in the parking lot I would probably fall over in the aisle and start puking everywhere. So, it's a big improvement. No longer crashing shopping carts into everything, either. It's still disorienting to be in less-often-visited busy stores (Ikea), even without kids, but with our weekly trips to Target for eye drops, I've got that one down.
-Took myself to the grocery store and did all the shopping. Didn't do it with kids, but didn't have Matt their with me, either. It's nice to know that when he's sick and can't go out with me we won't have to just starve to death.
-Drove the bigger car (the one I don't like to drive) on roads I'm not really familiar with and in a busy parking lot, successfully.
-Ran a mile. Ran! A mile! I haven't done that since... 5th grade? And haven't done it willingly probably ever. I am not a runner, but I'm making a 5k one of my goals. Being afraid I was going to die made me realize a little bit that it would be a shame for a perfectly good body to die off without having ever really been 'used'. I've never been overweight, but I'm not really 'fit', either. Now I work out (Wii Fit or yoga tape or boot camp tape or something) 1/2 hour to an hour about 6 times a week.
Unfortunately we've had some colds going through the house in the last week (it's been COLD here), so I haven't gone to my parent's to run on the treadmill 3x this week like I wanted to.
Hopefully this all helps to increase my endurance for going back to night shift!
Some not so great things about this week:
-I'm pretty much giving up on short-term disability. I'm making phone calls every day and not getting anywhere with scheduling appointments. I can't even get in contact with my general practitioner to see if she's talked to Dr T. And I've been working at making a second-opinion neurosurgeon visit for almost a month now. Every bit of working with the healthcare system from home has been a disaster from day one, the monday after the ER visit. I can't express enough just how angry I am over it all and just how DONE I am. I'm sad for other people in similar situations, because if a NURSE who is somewhat okay (at least not terminal) can't figure out case managing herself through this mess, how is the everyday really sick guy supposed to do it?
-Headaches. They're baaaaackk! Well, they've never really been gone, but they've been becoming more and more intolerable. Not so much this week. I even gave up and took one of my post-op pain pills the other day. It worked, thank goodness, but I can't take those and drive, or work. Yesterday I just sucked it up and dealt with it since I thought I might have to driev at some point in the day. Today is starting out the same. Hopefully I can get into the new neurosurgeon soon, and I can get some answers. I can't help but be scared of another tumor, though rationally I know it's unlikely.
Next week I have my follow-up testing with SLP to look forward to. I'm really hoping I test better, since I'm finally feeling better (at least cognitively), and want to get back to work.
Tuesday, January 5, 2010
The Three Month Pictures
Three month post-op face.... "regular" face, trying to close eye, and trying to smile.
Really non-flattering pictures, but whatareyagunnado? I cracked the corner of my mouth trying to wipe lipstick off of it on New Years Eve. As it turns out, it's hard to put that stuff on when you 1) almost never wear it, and 2) can't pucker or move your lips.
Remember when I had red hair and could do this?
Ah, the good ol' days (2007).
I really hate the way my face looks now and am really resistant to people taking pictures. I'm just reallly hoping that one day it's better and that maybe I'll appreciate it when it is.
Also, I forgot I have a three month post-op scar picture.
Not tooooo bad, eh? You can probably tell the part that still hurts a fair bit. But about half of the 6" are within hair now.
15 Weeks Post-Op
I was discharged from PT today!
Apparently 30 minutes to an hour of WiiFit and/or yoga every day helps enough that I could pass my reassessments, even in dim light, and I did well enough on their balance tester machine thing that Sandra felt okay to sign me out. It's bittersweet, as I really like PT and Sandra and Kernan hospital.. but when you're on the treadmill *running* next to an old guy trying to walk without his walker, it's time to admit that you're ready to go. The caveat being that I do need to keep up my homework and I'll likely never be completely 100%. Rough terrain and snow will probably always be somewhat of a problem I think. I plan on taking up hiking this spring to try to work on that.
It's funny to look back on when I started PT roughly 12 weeks ago. Matt drove me, and walked me up there, and I just remember saying "How do they expect us to find this place?! It's like a maze!" Matt was like "It's only one floor up and two right turns..." I felt so confused and unsteady and dizzy!
In other news, I don't have any other news. What I mean by that is, the neuro-psych scheduler I was waiting to hear from said they don't have any appointments until June/July (!!!), and the neurosurgeon I'm trying to go to for a second opinion won't even *schedule* me until my records arrive from Hopkins.
In the meantime, I'm making it my goal to get back to work come February. I'm working so hard, even if the disability group wants to make me feel like I'm not and I'm some sort of a waste.
Also, I thought I should clarify from my last post that the disability group is *not* part of my work, they are a separate company contracted out to handle this stuff. Everyone at my actual job has been great, and I feel really lucky to be working for the hospital I work for.
So right now I'm one more step towards "normalcy" (or at least fewer appointments on the calendar), but I still maintain this place of being stuck between a rock and a hard place while the medical world decides what to do with me. If they ever schedule my appointments that is..
Edit to add - I think the left corner of my mouth may have just moved the slightest bit!
Apparently 30 minutes to an hour of WiiFit and/or yoga every day helps enough that I could pass my reassessments, even in dim light, and I did well enough on their balance tester machine thing that Sandra felt okay to sign me out. It's bittersweet, as I really like PT and Sandra and Kernan hospital.. but when you're on the treadmill *running* next to an old guy trying to walk without his walker, it's time to admit that you're ready to go. The caveat being that I do need to keep up my homework and I'll likely never be completely 100%. Rough terrain and snow will probably always be somewhat of a problem I think. I plan on taking up hiking this spring to try to work on that.
It's funny to look back on when I started PT roughly 12 weeks ago. Matt drove me, and walked me up there, and I just remember saying "How do they expect us to find this place?! It's like a maze!" Matt was like "It's only one floor up and two right turns..." I felt so confused and unsteady and dizzy!
In other news, I don't have any other news. What I mean by that is, the neuro-psych scheduler I was waiting to hear from said they don't have any appointments until June/July (!!!), and the neurosurgeon I'm trying to go to for a second opinion won't even *schedule* me until my records arrive from Hopkins.
In the meantime, I'm making it my goal to get back to work come February. I'm working so hard, even if the disability group wants to make me feel like I'm not and I'm some sort of a waste.
Also, I thought I should clarify from my last post that the disability group is *not* part of my work, they are a separate company contracted out to handle this stuff. Everyone at my actual job has been great, and I feel really lucky to be working for the hospital I work for.
So right now I'm one more step towards "normalcy" (or at least fewer appointments on the calendar), but I still maintain this place of being stuck between a rock and a hard place while the medical world decides what to do with me. If they ever schedule my appointments that is..
Edit to add - I think the left corner of my mouth may have just moved the slightest bit!
Sunday, January 3, 2010
Three Months [+ One Week + 5 days]
..not that I'm counting or anything.
I've, of course, been meaning to post for some time. But December has been quite a month, and I'm sure everyone knows how the holidays come and wipe you out and keep you from doing anything "normal" for weeks.
I am, however, happy to report that at this point I am finally starting to feel "normal". At least, this new version of normal. The face is still pretty paralyzed, the hearing on the left still gone, the balance still wonky at times, the headaches still aching, the left side still a little weaker, but I've been working sooo hard, and it's finally starting to pay off.
This past month has been mentally exhausting more than anything. Being kind of teased with the idea of going back to work, only to have it taken away has been a major fiasco. Basically, what it boils down to, is that when speech-language pathology did my Executive Function Test, it found that I had mild deficits in all areas except attention, where I had moderate to severe deficits. As it's been explained to me, this may not be a huge deal to the average guy, but been as I was a high functioning person before, as evidenced by things like my 3.8 GPA in nursing school, these deficits seem *major* to me.
There is a couple things they could be caused by, hopefully all of which are temporary. One is brain swelling. I guess if it swells all over it could potentially mess with the frontal lobe where all the good stuff goes on, even though the tumor was in the back.
Also, just general trauma/surgery no matter what the kind causes some lowering of abilities just due to your body having to deal with something else going on. In the same way, the depression I've had lately would have the same effect.
And then, related to that is my own personal belief of the "cause", which is all the mental energy now devoted to previously subconscious things takes away the amount of mental energy available for things like paying attention. Think about it - if you had to remember to breathe every five seconds or beat your heart 70 times a minute you'd probably not be so good at things like multitasking either. Of course, that's being dramatic, but really - if I want to blink my left eye, I have to think to shut it. It doesn't blink automatically along with the right. I have to remember to put 'tears' in for it. I can't filter sounds from each other (ex - when I'm on the phone I hear the kids talking at the same volume as the person on the phone, and covering my left ear while the phone's on the right obviously does nothing). Balance and movement are being less consciously-controlled now, thank goodness, but add in a variable like dark or a squishy surface and it's a real challenge.
So anyway, that's what the testing found.
Everyone (SLP, PT, general practitioner..) agrees that if I had a "desk nursing job" I'd probably be okay to try, but since I'm clinical, they don't think it's best to try me out while managing people's medications and whatnot. At least not yet.
For roughly two weeks the speech-language pathologist and neurosurgeon played phone-tag so the one could explain my findings to the other. The main importance of that being that the short-term disability group would only take the word of the surgeon, even after I faxed them a letter signed by my speech-language pathologist and physical therapist explaining their recommendation for not returning to work.. yet. I also went to my general practitioner and she agreed - if the people I've been working with for weeks did these evaluations and say they don't think I'm ready, I'm not ready. Too bad for me, Dr T won't authorize any more time off and has told short term disability that. Sooo, I've tried scheduling second opinions with another neurosurgeon and a neuro-psych person. Tough to do in the week before winter break, and no one's called me back yet.
What that basically boils down to, is no income for the last month, no letter saying I can go back to work, no letter [from the surgeon] saying I can't go to work, and lots of phone calls from grumpy people at short-term disability who basically make me sound like a liar who's just trying to work the system to get money out of them.
It's especially hard to case-manage yourself through this sea of paperwork and phone calls and appointments when you have documented deficits in those kinds of mental activities. That's been an "exercise" in itself. The best part is when the disability people say, over the phone, "well you sound fine".
(And speaking of grumpy phone calls, in the days before Christmas we got a letter from Hopkins that a $47000 [yes, fourty seven THOUSAND] bill was being sent to collections because insurance hadn't paid it yet. This is the bill I already paid on before admission and was told "this will be the full amount you owe - the rest will be covered by insurance". I think I've gotten it straightened out now, but man I hate making those calls. And getting those bills.)
In the meantime, I've been working my butt off to be 'recovered' already! I've worked out more since surgery than probably ever in my life. I have the record on the Wii Fit to prove it. Plus on days when I don't do the Wii, I like my Biggest Loser Yoga, and of course they sometimes try to burn my legs off in PT. It's starting to pay off in some ways, as this past Thursday I saw my physical therapist after two weeks of subs while she was on vacation, and she really noticed a difference. She even retested me in the dark and I passed! So tuesday maaaay just be my last day of PT.
I've also been working on the mental stuff and on my face.
In December I saw Speech-Language Pathology twice a week for working on cognitive skills and working on the left side of my face. We tried electrical stimulation for three half hour sessions and then decided to ditch it after there was little to no improvement. Basically she has a little electrode pad that goes on the injured facial nerve and shocks it (it just feels like a weird tingly thing) while I tried to pucker my lips and smile and exercises like that. I see very slight improvement, like I can drink out of a cup without a straw if I really want to so my pucker is a little better, but that's about all. I'm interested to see what Dr F thinks in March - whether he will still be talking surgery or not. For now, I just continue my exercises of basically trying my best to get it to move. Very frustrating, but there's nothing else I can do.
For mental exercises, I was given home exercises on a website called lumosity.com. I've been doing it since just before Christmas and already I feel much better, and my scores on it are improving. Before that, my exercises were do to things that involved as much multitasking as possible, like baking multiple kinds of cookies at the same time. There were moments when I stood in the middle of the kitchen, the oven timer beeping, dirty dishes in the sink, a try of unbaked cookies in my hand, and I couldn't figure out what to do next. It's such a weird feeling to try to describe, and luckily it's just momentry (I didn't burn any cookies), but it's a sudden confusion, combined with fear because I know there's something I should do and it shouldn't be confusing.
But, the lumosity training seems to really be helping, and I spend a good chunk of time on it each day. Actually, that's part of the reason it's taken so long to update the blog, because internet time is devoted to brain training. One of the best parts of it is it tracks your scores in various areas like attention and memory, so I have graphs that prove my improvement.
As for the eye, all good news there. Dr D said it closes about 80% and that's good enough for no more surgery on it right now. I'll see him again in April. Dr L also said he's amazed at how well my cornea is holding up, especially considering the amount of exposure it gets. I'll keep seeing him monthly until my face decides to work again.
For products, I've been using Refresh Celluvisc drops in the day (about every three hours, though sometimes I need them more like every hour and sometimes I can go about 6 hours) and Refresh PM at night. The PM stuff is basically vaseline and mineral oil, and it melts and runs all over my face, so my skin hasn't agreed with it too much. But as long as it works for my eye, I guess I'll have to just deal with the pimples as a minor side-effect.
My scar is still pretty tender, but doesn't look as red now and is largely covered with hair. I have pictures for the next time I have a minute to upload them.
Headaches are still a daily nuisance but are kind of just becoming a fact-of-life. After almost a year now of near-daily headaches, I've learned to deal.
One bad thing has been colds this season. I cough one and it's just lingering. Really wearing me out. I generally need 10-12 hours of sleep at night, and with the cold I'm still tired after that. Actually that was one funny doctor conversation this past month -
Dr J (general practitioner) - How's your energy level?
Me - Better.
Dr J - Do you take naps?
Me - No, not anymore... But I do need about 10-12 hours of sleep at night.
Dr J - And what happens if you don't get that?
Me - Well then I need a nap!
And with that, I better get to bed.
I've, of course, been meaning to post for some time. But December has been quite a month, and I'm sure everyone knows how the holidays come and wipe you out and keep you from doing anything "normal" for weeks.
I am, however, happy to report that at this point I am finally starting to feel "normal". At least, this new version of normal. The face is still pretty paralyzed, the hearing on the left still gone, the balance still wonky at times, the headaches still aching, the left side still a little weaker, but I've been working sooo hard, and it's finally starting to pay off.
This past month has been mentally exhausting more than anything. Being kind of teased with the idea of going back to work, only to have it taken away has been a major fiasco. Basically, what it boils down to, is that when speech-language pathology did my Executive Function Test, it found that I had mild deficits in all areas except attention, where I had moderate to severe deficits. As it's been explained to me, this may not be a huge deal to the average guy, but been as I was a high functioning person before, as evidenced by things like my 3.8 GPA in nursing school, these deficits seem *major* to me.
There is a couple things they could be caused by, hopefully all of which are temporary. One is brain swelling. I guess if it swells all over it could potentially mess with the frontal lobe where all the good stuff goes on, even though the tumor was in the back.
Also, just general trauma/surgery no matter what the kind causes some lowering of abilities just due to your body having to deal with something else going on. In the same way, the depression I've had lately would have the same effect.
And then, related to that is my own personal belief of the "cause", which is all the mental energy now devoted to previously subconscious things takes away the amount of mental energy available for things like paying attention. Think about it - if you had to remember to breathe every five seconds or beat your heart 70 times a minute you'd probably not be so good at things like multitasking either. Of course, that's being dramatic, but really - if I want to blink my left eye, I have to think to shut it. It doesn't blink automatically along with the right. I have to remember to put 'tears' in for it. I can't filter sounds from each other (ex - when I'm on the phone I hear the kids talking at the same volume as the person on the phone, and covering my left ear while the phone's on the right obviously does nothing). Balance and movement are being less consciously-controlled now, thank goodness, but add in a variable like dark or a squishy surface and it's a real challenge.
So anyway, that's what the testing found.
Everyone (SLP, PT, general practitioner..) agrees that if I had a "desk nursing job" I'd probably be okay to try, but since I'm clinical, they don't think it's best to try me out while managing people's medications and whatnot. At least not yet.
For roughly two weeks the speech-language pathologist and neurosurgeon played phone-tag so the one could explain my findings to the other. The main importance of that being that the short-term disability group would only take the word of the surgeon, even after I faxed them a letter signed by my speech-language pathologist and physical therapist explaining their recommendation for not returning to work.. yet. I also went to my general practitioner and she agreed - if the people I've been working with for weeks did these evaluations and say they don't think I'm ready, I'm not ready. Too bad for me, Dr T won't authorize any more time off and has told short term disability that. Sooo, I've tried scheduling second opinions with another neurosurgeon and a neuro-psych person. Tough to do in the week before winter break, and no one's called me back yet.
What that basically boils down to, is no income for the last month, no letter saying I can go back to work, no letter [from the surgeon] saying I can't go to work, and lots of phone calls from grumpy people at short-term disability who basically make me sound like a liar who's just trying to work the system to get money out of them.
It's especially hard to case-manage yourself through this sea of paperwork and phone calls and appointments when you have documented deficits in those kinds of mental activities. That's been an "exercise" in itself. The best part is when the disability people say, over the phone, "well you sound fine".
(And speaking of grumpy phone calls, in the days before Christmas we got a letter from Hopkins that a $47000 [yes, fourty seven THOUSAND] bill was being sent to collections because insurance hadn't paid it yet. This is the bill I already paid on before admission and was told "this will be the full amount you owe - the rest will be covered by insurance". I think I've gotten it straightened out now, but man I hate making those calls. And getting those bills.)
In the meantime, I've been working my butt off to be 'recovered' already! I've worked out more since surgery than probably ever in my life. I have the record on the Wii Fit to prove it. Plus on days when I don't do the Wii, I like my Biggest Loser Yoga, and of course they sometimes try to burn my legs off in PT. It's starting to pay off in some ways, as this past Thursday I saw my physical therapist after two weeks of subs while she was on vacation, and she really noticed a difference. She even retested me in the dark and I passed! So tuesday maaaay just be my last day of PT.
I've also been working on the mental stuff and on my face.
In December I saw Speech-Language Pathology twice a week for working on cognitive skills and working on the left side of my face. We tried electrical stimulation for three half hour sessions and then decided to ditch it after there was little to no improvement. Basically she has a little electrode pad that goes on the injured facial nerve and shocks it (it just feels like a weird tingly thing) while I tried to pucker my lips and smile and exercises like that. I see very slight improvement, like I can drink out of a cup without a straw if I really want to so my pucker is a little better, but that's about all. I'm interested to see what Dr F thinks in March - whether he will still be talking surgery or not. For now, I just continue my exercises of basically trying my best to get it to move. Very frustrating, but there's nothing else I can do.
For mental exercises, I was given home exercises on a website called lumosity.com. I've been doing it since just before Christmas and already I feel much better, and my scores on it are improving. Before that, my exercises were do to things that involved as much multitasking as possible, like baking multiple kinds of cookies at the same time. There were moments when I stood in the middle of the kitchen, the oven timer beeping, dirty dishes in the sink, a try of unbaked cookies in my hand, and I couldn't figure out what to do next. It's such a weird feeling to try to describe, and luckily it's just momentry (I didn't burn any cookies), but it's a sudden confusion, combined with fear because I know there's something I should do and it shouldn't be confusing.
But, the lumosity training seems to really be helping, and I spend a good chunk of time on it each day. Actually, that's part of the reason it's taken so long to update the blog, because internet time is devoted to brain training. One of the best parts of it is it tracks your scores in various areas like attention and memory, so I have graphs that prove my improvement.
As for the eye, all good news there. Dr D said it closes about 80% and that's good enough for no more surgery on it right now. I'll see him again in April. Dr L also said he's amazed at how well my cornea is holding up, especially considering the amount of exposure it gets. I'll keep seeing him monthly until my face decides to work again.
For products, I've been using Refresh Celluvisc drops in the day (about every three hours, though sometimes I need them more like every hour and sometimes I can go about 6 hours) and Refresh PM at night. The PM stuff is basically vaseline and mineral oil, and it melts and runs all over my face, so my skin hasn't agreed with it too much. But as long as it works for my eye, I guess I'll have to just deal with the pimples as a minor side-effect.
My scar is still pretty tender, but doesn't look as red now and is largely covered with hair. I have pictures for the next time I have a minute to upload them.
Headaches are still a daily nuisance but are kind of just becoming a fact-of-life. After almost a year now of near-daily headaches, I've learned to deal.
One bad thing has been colds this season. I cough one and it's just lingering. Really wearing me out. I generally need 10-12 hours of sleep at night, and with the cold I'm still tired after that. Actually that was one funny doctor conversation this past month -
Dr J (general practitioner) - How's your energy level?
Me - Better.
Dr J - Do you take naps?
Me - No, not anymore... But I do need about 10-12 hours of sleep at night.
Dr J - And what happens if you don't get that?
Me - Well then I need a nap!
And with that, I better get to bed.
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