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Carol, I had 2 DBSs (one redo) in 2003. They really do help control tremor
and I understand that is a PD symptom most difficult to treat and one that
responds well to DBS. I believe I lost my voice because of the redo, but
it is hard to tell as that is also a PD symptom. All I know is that is when
I date my trouble speaking. It also got worse after raising the voltage on
my neurotransmitters. My hands are still like paws, writing is almost
impossible and I have difficulty walking. I don't take any PD meds as they
never helped me but once. My neurologist says my muscle tone is good and I
can get out of a chair fairly easily for someone with PD. I get botox shots
for the dystonia in my left leg.
Some people have had all their symptoms alleviated by DBS, others have had
poor results. I was 67 when I had it done. Like so much with PD you don't
know until you try something, so it hard to tell how you would fare - having
a good team is essential, of course.
I swore I would never have it, but when my tremors went bilateral I
changed my mind. Two years ago I fell 3 times, but my balance is a lot
better now. I had had PD 7 years when I had DBS. Although I'm glad I did
it, I don't see brain surgery while awake as a routine treatment. If you
google Rayilyn Brown you can probably find my story on CNN.com "I had brain
surgery while awake" or I can email it to you. My neurosurgeon and MDS were
at Scripps La Jolla, CA. I moved to AZ in 2004 and have a neuro who can
program the neurotransmitters, although he is not as skilled or experienced
as the Scripps team. Good luck. Ray
PS - I don't' see how it could be done without the iron halo. I tremored so
bad during surgery the whole bed shook.
----- Original Message -----
From: "Carol Kerr" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, November 24, 2006 10:43 AM
Subject: DBS SURGERY
>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
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
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December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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