Eight, Almost Nine, Weeks Post-Op

Late yet again in my weekly post. And again, it's not because there was nothing to say in the last week so much as there was too much going on and too much to say!

On Saturday the 14th I managed to drive (in the day) while following directions, and also on the beltway! Matt and I got haircuts, so now I'm back to a short pixie-cut. I'm lucky to have a friend who owns a salon, so she knew ahead of time about the scar / head issues and even alerted the shampoo guy ahead of time that I wasn't going to be shampooed. I'm still nervous about the scar opening or something, and other people touching it, though it never seems to hurt when it's touched (it only hurts randomly when it's being left alone!). Because of having socially acceptable hair, I went scarf/bandana free this week for the first time since surgery, giving the scar it's public debut. So far no weird looks or comments, though sometimes I think people are tempted. Lots of compliments on the hair though, so props to Sarah at Visual Changes! An added bonus, is without the head coverings people seem to see improvement in my face, even though there isn't any.

Friday the 13th, Monday the 16th, and Wednesday the 18th I had PT and OT. I walked on a balance beam! Sandra, my PT repeated my measurements from my initial visit, since I've been with her for one month, and pretty much everything I couldn't do before I can do now. Which is not to say I can do it *easily*, but I do have the ability to stand on one foot. Yey! There are just two muscle groups on the left that are significantly weaker than the right, so I'm working on those at home. I'm scheduled for another month of PT to work on strength, stamina, and continued vestibular training. Sandra also said the swelling in my face looks like it's gone and that the sides look more symmetrical (I think it's the hair).

In OT, I was discharged wednesday! I also showed improvement on all my tests, though she said she would have liked my left-handed 9-hole-peg-test to have been even better. I have an exercise sheet to continue practice at home, as well as the thera-putty. Plus, if after returning to work I notice anything hard in particular I can always go back for some more "fine tuning". One thing I noticed, is that at around two-ish weeks weeks postop I had tried to clap along to a song and couldn't because I couldn't get the left hand to maintain the time. Now I can. So that's always nice.

I've also been fairly diligent in the last week or week and a half in doing exercises on the WiiFit my friend Liz lent me. I don't do the balance ones so much because they annoy me / are really hard, but the aerobic games I like to do use a fair bit of coordination. I also kind of hoped the exercise would help my mood, though I haven't noticed much of an effect.

Speaking of mood, Tuesday the 17th I started with a regular therapist. We ended up going 30 minutes over the hour time and I still could have talked a lot more! I feel like my recovery is "lopsided" because I've been working so hard on the physical, and it's much improved, while the emotional recovery is just barely started. When I've mentioned to people about seeing a psych therapist (I'm determined to not be embarrassed about it), they say things like "Oh yeah anyone who's had a major surgery like that should go talk to someone!" Would have been nice for the docs to recommend when I was discharged 8 weeks ago...

Wednesday the 18th, after PT and OT, I saw my favorite doctor, my corneal specialist Dr L. He immediately came in all excited and said "Smile!", thinking my face was improved (I think it's the hair), only to be disappointed when it wasn't. I told him that Dr T said 9 months to a year, but I wasn't expecting full recovery anyway. He said "well, you know sometimes doctors just don't like delivering bad news.." True enough. I also told him that the plug and celluvisc drops have changed my life for the better but I can't get the stupid Lacrisert to stay in my eye. I think it's because my eyelid doesn't have enough tone to hold it. He said it doesn't matter as long as my eye feels better. My cornea still looks good, even better than last time in fact, so were stretching our visits out to a whole month in between! In the end, I told him "I probably won't claw [my eye] out." He said "Oh good, because it's really hard to get them back in. No really, I really hate doing it." I was like :O JK Dr L!

Thursday was Benjamin's 4th birthday. In honor of it, I had a hearing test and appointment with Dr F (the ENT who did the surgery with Dr T). The hearing test confirmed what we pretty much knew - I'm deaf on the left. Completely. I had kind of hoped something was coming back, but it turns out it must be bone conduction I'm "hearing" or something. Luckily the right ear rocks out on hearing tests still. It's pretty crazy that I had normal hearing on the left pre-op. That only happens in something like 10% of acoustic neuroma patients.

If the deafness bothers me, the tech said I have two choices for aids - a CROS aid, which involves a piece in each ear where the sounds "heard" on the left are sent over to the right, or a BAHA, which is a bone-conduction device that requires a minor surgery to place a tianium bolt-like thing in your head, to which a processor is attached. I've also heard of, via the ANA forums, something called a TransEar, which seems like the best option. It's a bone-conduction aid that doesn't require surgery (which I'm not willing to have right now). Right now the deafness doesn't bother me a ton (it's the tinnitus that drives me crazy sometimes! .. think of sitting next to a white-noise machine turned on full-blast, constantly.) so I'm not rushing to get anything, but those are my options. The tech said some people only wear an aid at places like work and then wear nothing at home, so that might be an option. We'll see.

As for my appointment with Dr F, I love him. He's one of those doctors who has this skill of seeming 100% there and with you, even though you KNOW he's got a packed waiting room outside. The resident came to see me and ask questions first, then came back in with Dr F and a med student. They didn't do as much head shaking as before, but did a little and found I now have some right-beating nystagmus, which they said is due to some compensatory thing. Anyway not a big deal. They reinforced what I'd heard about the hearing stuff, and answered my question that no, my hearing is not coming back and it won't. Apparently the hearing nerve is very frail and weak, even as nerves go, so even though it's intact for it to recover would pretty much be a miracle. They looked in my ear and I have no "water" in there, so no CSF leaks at all. Go me! Or really, go Dr F! Since they have students in that office a lot they have a camera and TV hooked up to their otoscope, so Matt got to see the inside of my ear. Sounded like I must have a good "learning ear", because my eardrum is so perfect and clear that you can see things behind it (bones and stuff I guess?) that you can't normally. At least that's what Dr F told the student.

When it comes to my face, I have a House-Brackmann score of 6/6, which is the worst you can get. I have some tone, but absolutely no movement. Dr F said he's hoping to see me at a grade 4/6 or at least 5/6 when he sees me in March (6 months post-op). If I have no improvement at all, he'd like me to start consider surgery. I'm pretty bummed about that. Even though I have never had hope for a full recovery, I was thinking (hoping) that with the nerve intact I would at least have some smile again one day. And without another yucky surgery. But now I'm scared that won't happen. I see and feel no attempts at a twitch or anything right now. I asked about acupuncture and he said he didn't have any experience with it but if I thought it would help my face or headaches or anything it would be worth a shot. I have to find out if I need an order and call him for one if I do. I've looked up a few things about possible surgeries and I don't much like them. The only good thing is that the one surgery was literally invented by two of the docs at Hopkins (one of whom was the one who was supposed to do my eye surgery except he couldn't see me in any quick time).

I've been having increased headaches in the last week or two and mentioned that at the appointment. Dr F recommended switching to Motrin 600mg (and gave me a prescription) to take round the clock rather than as needed. The only problem with that is you have to take it with food and I haven't had much interest in food lately. I'm certainly not getting up in the night to take it. Still, headaches at this time fits within normal healing apparently so nothing to worry about, which was good for him to say since I was thinking "another tumor already?!"

Dr F ended the appointment with saying he thinks I'm doing really well, especially considering the size of my tumor. He said "We were all really surprised at the size of it when we got in there!"
I said, "So it was about 5cm?" And he nodded very seriously. Then he basically said/implied that they were surprised with what I was doing with that big of a tumor, like going about normal life, etc. This was actually kind of good for me to hear since surgery "recovery" (aka the whole rest of my life after surgery, since I'll never be all the way recovered, and most AN patients attest to feeling like "new/different people" post-op) has been so difficult that I've wondered if it wouldn't have been better to just leave the thing alone. That conversation made it apparent that it definitely would not have.

Yesterday, saturday, was Benjamin's "Spiderman Birthday Party". It was kind of bitter-sweet in a way, as it reminded me of when my surgery was first scheduled for November 10th, and when I told Benjamin about it, he asked "Will you be there for my Spiderman birthday party??" At the time I really didn't know. Whether I would have been in the hospital still, or discharged but not quite with-it, or even not have made it through surgery, was still a question mark. But I was there, and I even was able to participate in things like stepping through hula-hoops. So that's something.

Tomorrow I have an appointment with employee health to see if I'm okay to come back to work, then tuedsay my Executive Function test and PT, wednesday appointment with the therapist. Whew! So many appointments. I realized something for my Executive Function Test, since everyone's been saying "Well I could watch a movie and not understand. That's no big deal." I seem to have lost like common sense fast reactions. For example, I could see a drink spill, and not think to get something to wipe it up until someone else starts to or tells me to. It's weird. Like normal things that don't occur to me. We'll see what happens with that!