Hi All,
I am exactly one-year post trans-lab. One year ago today I was in St. Vincent's in LA with House Clinic. At the 11th hour, after arriving in LA, they switched me from Retrosigmoid to Translab because they revised downward my prognosis for success with RS. Prior to surgery I had symptoms of headaches, exhaustion, general malaise, tinnitus, partial hearing loss (right), unable to make it through the day without lengthy naps, balance issues. Before realizing I had AN, I had left work because I felt I could no longer do a decent job there.
Following surgery, for about 5-6 months, symptoms have been: headaches gone, exhaustion largely gone, but..., malaise largely gone, but, tinnitus much less to mostly gone, total hearing loss on right side, sleepiness gone, balance issues continue, though less than before surgery, facial muscle issues on right side ongoing since surgery.
In 5-6 months post surgery I felt I was making progress with balance and facial impact and felt reasonably optimiztic. I was on disability until December at which point I went off of it as I was making progress and thought I would be able to look for work soon.
In the most recent six months I feel like my recovery progress has basically stopped. Right side of my face continues affected -- right eye droops/wants to close, right mouth corner dribbles a little. Friends tell me its not very noticeable, but I sure notice it. Balance issues continue. Several weeks back I had a full on fall due to loss of balance in the dark. I came away from that feeling very angry that I was not doing better. I also continue to have a sort of bobble-headedness, a feeling of cloudiness or slight pressure inside the head. This gets worse when I walk, as opposed to lying down or sitting. It makes me somewhat unstable on my feet, and contributes to ongoing tiredness when I try to be active. And it makes me feel rather dull and slow-witted.
I am unhappy with the lack of progress in my recovery. I made the choice to have surgery and there have certainly been some benefits from doing so. But in some ways, it appears that I am simply not recovering. I have enrolled in tai chi and that does, at long last, appear to be helping me find a little improvement, although I am still dissatisfied. I have not gone back to work because I haven't "recovered" yet, because looking for work seems very daunting when I am still not well, although things are "better". Since I said in December I was "better" and chose to go off disability, I have been told I can't reinstate it. My finances are going steadily downhill.
I have let the disability thing lie because I don't want to be a parasite, because things are "better", and because those little voices in my head say that I am whining and should just buck up and get over it and not make such a big deal out of this. But I cannot go forever without going back to work and I still don't feel as competent as I would like to feel in going to look for work. I am 60 years old.
As I said, I chose to have the surgery. It was my decision, my responsibility. I made the best choice I could given the available information. House Clinic treated me very well and did a good job and I am not trying to lay any blame. But I cannot deny feeling discouraged about this whole process and my lack of continued recovery. House Clinic did tell me my recovery would be five months at the outside, but I think they were being overly optimistic. It is what it is.
I'm not sure what I am asking for here, though I am certainly asking for something. I would be interested to hear from others with lengthy recovery. I would also like to know if I can qualify for some measure of disability, since this seems to be going to go on indefinitely, and, if so, how do I pursue that when I am "better".
Thanks very much for your thoughts and effort.
