Jackie and Bob,
I had a right side pallidotomy in Dec.'93 and was the first north Ameican dbs in Dec.'94. I was given a second chance at life and have used it to the full. I'm speaking at my neuroosurgeon's retirement party on monday evening.
Delighted with your good news
Cheers,
Bill
--- Original Message -----
From: Jackie G.
To: [log in to unmask]
Sent: Friday, November 24, 2000 7:50 PM
Subject: DBS - Miracle
Dear List,
I wanted to share with you Bob's wonderful results from his second DBS surgery. First, some background (very condenced):
a.. Bob is 50, diagnosed about 10 years ago.
b.. Initially he had a tremor, but more rigidity.
c.. 1997 had a pallidotomy, (Dr. Jim Schumacher, FL) tremor ceased.
d.. The Rigidity and more and more freezing and slowness still remained.
e.. January, 2000, he had a DBS implanted in his right brain for his left side (which was always his worse side). (Dr. Jim Schumacher)
f.. Right after surgery, did not do well, in fact, got much worse.
g.. Added meds, got slightly better.
h.. October 20, 2000 had the second DBS performed (on is left brain). (Dr. Jim Schumacher)
i.. Nov. 22, 2000 at 1:15 P.M. the DBS was turned on.
Bob has been doing great ever since! He usually takes 4 Requip, 2 reg. Sinemet 25/100 and 3 Sinemet CR 25/100 each day. Yesterday (Thanksgiving) he took ONE reg. Sinemet and today he took ONE Sinemet CR!!!!!!! He can dress himself, he can get up out of a chair 99% of the time, he now smiles. Today we went to see a movie, we held hands. It has been 2 years since he was able to sit through an entire movie. Last night he slept through the night (he is still taking one Ambien, but he never slept straight through the night, he hopes to get off of them too). I hope that this large reduction in Sinemet will not hurt him.? The Neuro said if he felt ok, don't take it, if he felt he needed it, then take it. We will see the surgeon on Monday (I am sure he will be soooo amazed). I only pray that this continues. Dr. Chris van der Linden (of our List) did explain to me months ago that with Bob's symptoms of rigidity and freezing that he HAD to have two brain stimulators in order to see any improvement, and he was so right!
The only draw back (very minor) is that his speech is slightly slurred. The doctors explained that his voice may become weaker, but his voice was already quite weak and soft, but now it has more inflection but slurred.
I only wish all Parkies could have this surgery with these results! We are so hopeful that this is the start of the rest of his life.
We truly had a wonderful Thanksgiving,
Jackie Gilman
