I am yet another Carole in a similar situation. Slight
Hi Holly,
I am yet another Carole in a similar situation. Slightly older, slightly more advanced, but definitely starting to go downhill. Would be etenally grateful if you keep us postetd, aa I know there are many others in a quandry re: DBS.
Carole Hercun
----- Original Message ----
From: William Angus <[log in to unmask]>
To: [log in to unmask]
Sent: Monday, November 27, 2006 1:23:38 PM
Subject: Re: DBS SURGERY
Hi, Carol --
I read your e-mail with special interest because it sounds as though
we are in similar situations. I am 52 years old and have been dx'd
for about 9 years. Same symptoms as yours, except that my balance
hasn't been affecfed to the degree that your has (from the sounds of
your letter). My surgery is scheduled for Jan. 30 so if you'd like to
keep in touch, I can try to keep you posted as I go through it.
People say to me, "Why are you doing this? You don't look that bad,"
and I questioned whether I was jumping the gun or perhaps being
greedy by wanting to improve my "quality of life" when what I have is
pretty good, but my neurologist put my mind at ease and I'm
proceeding with confidence once again. He suggested DBS when I
developed fairly severe dyskinesias that can't be controlled by
medication (I can't take Amantadine) and my on/off periods started
becoming unpredictable. He believes that patients who are not
tremendously advanced do better with the surgery, recover faster, and
enjoy greater benefits that patients who resort to DBS only as a last
ditch effort. (He said, in regards to your question about
handwriting, that usually the surgery doesn't restore that. Nuts.)
My neurologist is very, very involved with the surgery -- he will be
there during the entire procedure (along with a bunch of other
people) and there is much comfort in that.
Good luck finding the info you need -- I'll help if I can.
Holly
On Nov 24, 2006, at 11:43 AM, Carol Kerr wrote:
I am considering having DBS surgery and am interested in hearing from
anyone
who has had it done. I am 54 uears old and have been dx for almost 5
uears.
I have virtually no tremor, but have extreme stiffness, bradykinesia,
and
balance problems. I am falling about every other day. i take
sinemet every four
hrsl. (up from every 5 hrs six months ago ) . I feel it wearing
off after
about 3 1/2 hours now. I alaso take a cr at night.
Some things I am intersted iin knowing
if any of your symptoms were similar to mine what difference did
it make?
(also with relation to speech , nandwriting
how involved has your neurologist been
are there any other specialists on your "team" or that you wish
you had
involved
anything you wish you had asked about before hand
has anybody done it frameless
Thanks for any input
carol
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