Hi. I'm new to the site, but almost 5 years post-op. I've been reading a lot of the postings and it makes me realize how, relatively lucky I have been in my experience. I so admire all the positive postings, when I can only imagine (and know from some experience) how hard this can be.
My history (in brief): I was 33 when they discovered I had a 4 cm meningioma that was in the base crainal area. They thought they might be able to save my hearing, but in fact the tumor and grown into the bone. I woke up with total PF on my left side, and deaf in that ear. But, I had a brilliant surgeon in NYC, Dr. Sen. Two and a half years later, I was married and pregnant and developed a spinal fluid leak and after my daughter was born, I had to have a surgery to seal it. I went to Dr. Brackmann, also a master in his craft. By now, my face was much improved. Dr. Brackmann, rating me on his own scale, said I was a three, but on the two side (my eyebrow doesn't move properly and so they can never say I'm actually a two). At rest, I look fine, but it is my smile (and I had a big pretty smile) that really is gone. I have a small, closed mouth smile. I've been to see, both Jackie Deals in Wisconsin and Karen (in Holland) who both taught me various exercises, which I think helped. I was continuing to do them until six month ago when my husband left me (another story).
But I definitely would encourage everyone to do the physically retraining. It takes in the area of 3 years, every day. So it's a serious commitment, but I believe, the muscles can be somewhat retrained. Also, the doctors all say whatever you have back at the end of the first year is all you'll get. But Jackie says, that most people get the most recovery between years two and three, which was true for me. I'm hoping that even more can happen over time. I think the people who snap back get it in that first year or two, but healing continues.
I have been fortunate, in that my eye came back after six months and I no longer need drops, my teeth have been fine until a recent cavity. I have not headaches, balance problems, etc. I had a really excellent surgeon. But I miss my old face. I miss being able to smile broadly at people and communicate that joy. Everyone says, I look "fine" but it's so painful to lose such a integral way of relating to the world. And the thought of having to find a new partner like this, seems impossible. I need to form a new identity around being a person with a slightly weird face and I'm guess I'm just mourning the loss of what I had. I'd love to find a support group near me (I'm in the SF bay area) or even just a few people out here who want to get together. I know I shouldn't complain. When they caught the tumor they gave me two good years left to live, if I did nothing. And now I have the most beautiful, healthy daughter and I, myself am healthy. I just miss being pretty, having control over that side of my face, feeling normal and happy to attract attention. I know it sounds petty and it is petty, but I am trying to let go and move and be grateful. I'm sure the fact that I am now alone, jobless and left to fend for myself doesn't help. I feel it will be harder for me to get jobs looking like this, but maybe I'm just paranoid.
I'd love to talk with a few people. It's been hard for met to connect so far, because I have been so sad about this, but it's finally time for me to shake myself out of denial, stop feeling sorry for myself, mourn and move on. When I read about all the problems people are having, I know I got so lucky.
I also want to encourage people to do the exercises and give it time. The medical community knows almost nothing about how nerves work. They are just throwing out their best guesses. I recently read an article about a stoke victim whose arm had been paralyzed for 20 years. They built a contraption to go around the arm and sense what nerve signal there way (or what should have been) and robotically move the arm the way it should be when the brian meant to be moving it. After about six weeks of three one hour sessions, people were getting up to 20% movement back! Who knows what they will be able to figure out. Just don't do too much damage, if you can help it.
Best wishes to all those who are suffering.
lila
