Re: DBS RESULTS -- AN INFORMAL SURVEY

[MyFirstname Mylastname <hpheller@xxxxxxx>]

My spouse had bilateral DBS/STN in November of '08. He had his surgery at=
 North Shore University Hospital in Manhassat, Long Island. His surgeon wa=
s Dr. Alon Mogilner and the neurologist who worked with him is Dr. Michael=
 Pourfar. Prior to surgery his biggest problem was complete freezing requi=
ring frequent use of a wheelchair. Medications, including the Apokyn injec=
tion were no longer working. He was about 56 at time of Parkinson's diagno=
sis and is now 66. The DBS gave him back his mobility and has controlled=
 a tremor. The main problem has been with the programming of the settings.=
 He was even in a research program for this. It has been hard to reach the=
 window between too much stiffness and dyskinesias. He still requires abou=
t the same amount of medications as before surgery. His speech has decline=
d somewhat. The team caring for him has been attentive and available and=
 willing to continue to work with the settings. By  the way Yahoo has a gr=
oup just for DBS, so you might want to check that out. Good Luck!





-----Original Message-----
From: Les Combs <lescombs@xxxxxxxxxxxxx>
To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
Sent: Sat, Mar 20, 2010 11:45 am
Subject: DBS RESULTS -- AN INFORMAL SURVEY


I have Parkinson's disease, and I am considering DBS surgery. I have searc=
hed=20
he Internet to try to find some statistical data about the probability of=
=20
ositive results versus negative results. I am coming to you for informatio=
n.=20
his is an informal survey and is not intended to be statistically signific=
ant.=20
f I get enough responses, I will post an e-mail on Parkinson listserv.
If you have had DBS surgery, or your spouse has had it, or a person for wh=
om you=20
rovide caregiving has had it, please respond to the following questions.=
 Please=20
rovide only one response per patient please.
When was the DBS surgery performed?
Was the surgery bilateral?
Did the patient show substantial improvement?
Did the patient's Parkinson's symptoms become substantially worse?
Were the patients Parkinson's symptoms substantially the same?
If you feel comfortable doing so, would you please provide me with the nam=
e,=20
hone number, and address of the doctor?
Please reply to this e-mail. And leave the subject line the same.=20
Thank you for any help you can give me.
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