I wanted to respond to Joyce who asked some specific questions about
the Pallidotomy procedure. Stan's primary problems were bradykinesia and
dyskinesia, but he did not have any cramping or dystonia. His meds were
stopped the night before surgery, so the next morning he needed help getting
dressed to get ready to go over to the hospital. He had showered and shaved
before he went to sleep. You may well be in the hospital the night before-
we were at the Emory Inn.
When he was in the recovery room, I went in to see him because it had
been so many hours and I wanted to see for myself that he was okay. He
looked wonderful. I knew he was better from the expression on his face -
the mask-like appearance was gone (and it has never returned). He was
started back on his meds in the recovery room. He spent the night in the
ICU and really did not get out of bed until later the next day when they
moved him to a regular room. It was at that time that we saw how much
improvement there was. The first week it was absolutely amazing how well he
was doing, then he had a very bad week, when we were both very upset, but
functioning has been improving gradually ever since. He has not yet reached
the level of that first week after surgery but he is still improving and it
has been 2 months.
All of Stan's physicians said he would stay on his original med doses
after surgery. We were hoping it could be reduced. We reduced it slightly
right after the surgery, but have brought it back up to the original level
recently.
He never had a lot of tremor, but I have not noticed any. Pallidotomy
reportedly improves tremor but that is not it's main claim to fame. His
dyskinesia is totally gone on the right side and he has fewer and far less
severe 'off' times. I understand that dystonia is also greatly improved
with this procedure.
If you have a lot of dyskinesia, and that is reduced, you may
experience some weight gain. Stan has a little, but I know several women
who have gained quite a bit of weight because their body is so still now.
As for post-op complications, Stan has increased drooling (not really
bad though) and we've been told that this is very common in Pallidotomy
patients. He has some speech problems - softer voice and less clear
articulation. He is also experiencing mild dysphasia, where he sometimes
may not be able to say what he is thinking, but says another word. All of
these problems are improving slowly as the lesion heals and the the swelling
of surrounding tissues goes away. It may take several more months before we
know the final outcome.
I do wish you (and David Boots) the very best with your Pallidotomy. I
know it is frightening to think about it, but the results are so worth
while!!! Try to think about how much better you will be, and don't focus on
the surgery itself. The quality of your life will be dramatically improved
even though this is not a cure. My very best wishes for a successful
outcome for both of you.
Susan Hamburger, CG for Stan 61, 15 yrs
It's a funny thing about life; if you refuse to accept anything but the
best, you very often get it.
W. Somerset Maughm
