Two years post-op

As of yesterday I officially made it to two years post-op. Which of course I figured I would. With a vestibular schwannoma if you make it to one year post-op you'll probably make it to two and three and so on until which point you reach some non-vestibular schwannoma related death. Which I don't mean to be morbid, it's just true.

Anyway, it's been over 5 years since I had an appendectomy and I don't celebrate that. I couldn't even tell you for sure which month it was when I had it, I just know sometime in summer '06. But September 22, 2009 isn't going anywhere. Apparently brain surgery isn't the same as an appendectomy. After the appy, I only took one motrin, and that was only because the nurse made me because it was supposed to hurt. Now, two full years post craniotomy, and I have to ration out my weeks doses of motrin and tylenol and imitrex.

Vestibular schwannoma / acoustic neuroma (whichever you prefer) surgery seems to turn people upside down, at least to some extent for everyone I've read about. I remember before surgery, people telling me "oh I know so-and-so and her relative's friend's cousin had the same thing and she's just fine now." I wonder if "just fine" is really accurate or just an outsider's perception. Because certainly things can look just fine without being so.

I'm not saying every single person who's had craniotomy for an AN has had major negative outcomes. There are plenty who do well. I just don't happen to be one of them. And I don't think it would benefit the people who e-mail me questions while they're going through their own experience, to pretend like I am. I'm one of the unlucky ones with chronic headaches, facial paralysis, single-sided deafness, etc. Not the unluckiest, I did wake up after the 10 hour ordeal, but not the best off I've read about. Not a day goes by that I don't think about it, and many days I still wonder if I would have been better off having never had surgery at all.

So at this point, I'd still say things are "just okay", same as I did this time last year. Chronic headaches continue to be a daily or near daily occurrence. Right now I'm on nortriptyline 75mg once a day and propranolol 20mg twice a day to try to help prevent them, and motrin and imitrex to help stop a headache that's started. The 'as needed' meds are still tough to figure out when to take. As I said I can only have so many a week, so I have to try to figure out each day if it will be a bad one worthy of a pill, or if I can tough it out and save the meds for another day. I hate having to take a bunch of medicine, but that's how it is.

Since my ER visit last month, I've had another horrific one where I almost went back to the ER. This headache was honestly the worst I'd ever had, a true 10 out of 10 pain. I was up rocking and crying and at one point vomited from the pain. I really thought I was going to die. It was much worse than being in labor. I called the neurologist on call at the hospital and he said to take another imitrex and a zofran (thank goodness I still have some left from after surgery!) and to lay flat. He said since I'd had a recent MRI that looked fine I should just stay home rather than try to make it to the ER. Thankfully, that headache hasn't returned, just the common 5-7 out of 10 type. Sometimes for as many as 12+ hours out of the day.

My face hasn't really improved since last year. In fact, I think it's gotten a little worse. I'm not sure if it's because of the tarsorrhaphy or because this time last year I had just gotten botox or if it's just the same and I think it's worse. Anyway, some people had requested updated pictures so here you go.

Please excuse the cracked corner of my lip and the fact that I'm sitting on the kitchen floor. I had done some pictures standing in the kitchen with glasses off, but I can't stand still for very long without getting dizzy, so floor it was. Also, blogger is going crazy with my trying to drag the pictures around to have them next to each other, so sorry about that, too.

I always wear my glasses, but I took pictures without them because I thought it might be easier to see my crazy eye in the pics without them.

And then lastly, some eye pictures. The November 2010 picture post of my nasty tarsorrhaphy eye gets a lot of hits for some reason. Before I had the tarsorrhaphy done I had searched for pictures of the post-op results and couldn't find many, so I'm going with the assumption that that is what others are doing, rather than looking for pictures of odd eye surgeries just for fun. So, just in case it might help, here's the evil left eye. It's 23 months post gold-weight and 10 months post tarsorrhaphy.

Really, despite being not the right shape and size, it's doing pretty well. Sometimes the weight feels heavy and kind of aches on the inside of my eyelid, and sometimes the tarsorrhaphy corner aches, and sometimes it just feels irritated in general, but I haven't had any more eyelashes growing inside, and as of the last time I saw Dr L everything looked good. No more dellens. Dry but not tooo dry. I still just use refresh PM ointment when I'm going to sleep and Refresh Celluvisc drops in the day, usually only once or twice. At work I use more, but it's really dry air there so it makes sense. I'm tempted to try a lighter-weight eye drop and see if it's good enough, but don't want to risk any of that terrible burning pain that my eye gets when dry (think like when you get an eyelash stuck in your eye - it feels like that). Dr L said the only reason they'd take the weight out is if it started to poke out on it's own. I was afraid it would have to be replaced after so many years, but he said it doesn't. I'm assuming this is the most facial recovery I'll probably have, so it seems likely that the gold weight and tarsorrhaphy will be permanent. Lame, but at least it means no more eye surgeries. I'd need so much ativan for anyone to come near my eye with a scalpel again.
Side note - My pupil is really that huge most of the time. It's always been big, but I think it's bigger post brsin surgery. I've even had a doctor do one of those exams where they usually have to dilate your pupils, but without the dilating drops.

I've had people that I've met within the last two years tell me that they didn't even know there was something wrong with my face without me telling them. I don't know quite how to feel about that. On one side, if they're telling the truth (which, honestly, to me seems unlikely, but maybe) then that's kind of cool. On the other side, I still feel like this isn't my 'real face', and I want people to know that there was a better face before this. I used to have a big smile like this:

I guess it's pretty good luck that I got married young, before all this. Not just because I got to have my 'good face' for my wedding pictures (though I do think about that), but also because my husband has been such an amazing support. I should have had more pictures taken. Oh well.

A friend from the ANA forum had asked me a question that I haven't responded to yet, partially because I'm a bad responder and partially because I've been thinking about my answer. Anyway, this friend also has facial paralysis and has been reluctant to go out much, and asked if I had any tips. In case that might also be a question on someone else's mind, I figure I'll respond here.
Basically, my tip is just try. Going out and being around people might be tough for awhile. I'm two years out and still pretty self conscious. But I don't really give myself a lot of a choice. I have to go to work, I have to go to the store, I have to take the kids places. It helps to have rad friends. If they're good friends like mine, they won't miss a beat and you'll have a great time even if you are self-conscious. The first non-doctor place I went to post-op was my friend Kate's birthday party. And even though I kind of had a zombie face and there was saran wrap stuck to my eye, no one really seemed to care.

I understand that not everyone has friends like that, but I promise it won't be as bad as you think. Little kids may stare, but luckily now it's not so much in horror as it is in curiosity. And that's okay, because I like to look at weird people, too.

One thing I do try to avoid is pictures. At first I was against them unless they were for 'documentation' purposes, then I tried to be okay with them, and now I've decided I just hate them. People take repeated shots as if they're going to get a good one, and it never happens. Because it's not possible. So as much as possible I try to just avoid it, as long as I won't offend anyone by sitting it out.

So besides being obnoxious and maybe changing a few small things, facial issues aren't too big of a deal when out. (Those small things? Well, you probably won't be doing shots at the bar anymore, at least not without a straw.. and don't forget eye drops, though at first you might be self-conscious about putting them in around friends, I figure if they're creeped out by eye stuff then too bad.. and food will get all over your lips while eating since they can't move out of the way, so always have a napkin around.) The things that are bothersome, are single-sided deafness and headaches. Not hearing out of both ears is crappier than I thought it would be. The constant hiss in the left ear is annoying. I got to go see a couple of bands this year, for the first time in awhile, and it just wasn't as enjoyable with only the one ear listening. I mean, it was still fun, but noticeably different. I can't hear conversations a lot, especially in noisy places. It's like before one ear must have listened to the background noise and the other must have listened to the conversation, and now right ear is trying to do both, and failing. I try to position myself so I'm on the outside of a table of people or line of people walking, but sometimes it's tough to do without looking crazy or weird. My friend Liz is the best and remembers better than I do which side she needs to be on so I can hear her. (Not that long ago I picked up the phone and said "hello?" and didn't hear anything, so I switched ears and tried it again because I truely wasn't sure which ear couldn't hear. Whoever it was never answered, so it was tricky. Then I laughed at myself. Good story.) Anyway, it makes being in public places not that fun, so sometimes I do avoid activities just because I know I won't be able to hear anyway. If I am out, I tell everyone upfront about my deaf ear, even if it's really none of their business, because I don't want them to think I'm rude when I totally ignore them.

Headaches have caused me to flake out more than I like. I've figured out that movement and talking both make my headaches worse, so you can see why that might be a bit of a problem. Even non-brain-tumor people cancel plans for headaches. It's just not something you can do all the time, even if you have a headache all the time.

So, in the end, I guess "just try" really is my only piece of advice. Sometimes you have to push through things. You already fought a brain tumor, so you shouldn't have to fight for your right to party, right? Or something like that.

At this point, two years post op, my biggest issues don't actually seem to be AN related. My MRI checked out clean again. But.. I'm still dizzy or lightheaded frequently. I still get nauseated. My head still kills me. I'm still exhausted. I still get confused. (The other day, driving to the store, I couldn't figure out if it was 2011 or 2012. I knew it was one of the two but honestly didn't know which one.) I still get overwhelmed in big crowds or overly-simulating places, like the new giant Toys'R'us near us. I'm okay in familiar places like Target, though. My depth perception isn't the best, so I'm not a big fan of driving, especially our bigger car. Or in the dark or rain or to somewhere unfamiliar. It doesn't keep me from getting to places I need to be, but I'm sure there are times when I decide not to go somewhere optional because of the drive or parking (haven't tried parallel parking yet).

Most of my issues actually seem to be cardiac in nature. Why the most vital organs have to be the ones with issues, I don't know. I expect my lungs to act up next.
I may have said before that neurology referred me to cardiology to evaluate for possible Postural Orthostatic Tachycardia Syndrome. They did an EKG and did watch my pulse make as big of a jump as from 90s-140 while going from laying to standing, and that wasn't even at my worst time (the morning). They ordered a number of tests and I see them again next week for results. I had labs drawn, a cardiac echo, a 24-hour holter monitor (continuous monitor strip), and a 2 week cardiac event monitor. On the event monitor I had a little cell phone looking thing on which I could note my symptoms when I had them and my level of activity. I dialed in a lot of 'events'. Enough that I was worried the company would call me and tell me to please stop abusing the monitor privledges.
Lately I've felt that my pulse has been fast more often that not. When it's fast I feel tired and dizzy and short of breath. When it's regular it feels like it beats really hard and I can feel my pulse in weird waves down my arms, and I get nauseated. It's really weird. And I'm very obsessed with it. My heart even starts racing in my dreams, and sometimes it wakes me up. The other day I stopped what I was doing in my dream to check my pulse.. still in my dream.

I'm still taking fludrocortisone 0.05mg once a day to help increase my blood fluid volume or something like that. I'm supposed to increase my sodium and water intakes but I'm not crazy about either, so I drink Gatorate, which kind of has both. No more Coke for me, though, as the caffeine makes my heart even crazier. And what's the point of Coke with no caffeine?

Luckily, I've been able to keep up at work, and have within the last 6 months even started running charge nurse duty for my unit once or twice a week or so. The downside is, I put in so much energy at work that I'm completely drained at home. I pretty much do next to nothing around the house, and am still tired. I've requested to switch to day shift and should be on largely days come November. I think that will be a big help. As it is now, it's very difficult to take my medication on a standard schedule. I also feel like if my body is having trouble moderating my heart rate, perhaps I should help it out by at least sleeping at the same hour each night. It only makes sense. And I figure, I should probably move to days now while we have time to ease into it rather than wait for a doctor to say "you must do it now".

I guess my goal for the next year is to figure out what's wrong with me and to try to tackle this headache issue. Doing those things with fewer medications and much less whining would be awesome, too.