[paula_w]

DBS.

I cannot tolerate my behavior or side effects from sinemet. As with anything else tho, I would like to be completely updated on DBS and on the upcoming GDNF gene therapy trial. Yes GDNF...

Starting a thread on each. We've had many threads on DBS. But there is always something to share. This is the doctor in Florida that i would seek to do it and an article about new targeting.

http://www.sciencedaily.com/releases...0313150119.htm

i hope there are new things to share.....all are welcome.

thanks,
paula

[lurkingforacure]

Paula,

First, I would like to thank you for all the work you have done and are still doing, you are an inspiration to many, many people.

Second, there is a ton of stuff about DBS out there...I would only add that I read recently that they are targeting a new area of the brain which helps with gait and balance as well. I don't know if they can put leads to both areas of the brain, or if they will do that if asked. I would just want as many bases covered as possible if I were going to do this. In other words....as long as you're in my head, could you also....(how about give me some extra IQ while you're at it? lol).

Second, there were some posts on here yesterday about targeting the spinal cord....much less risky, invasive, etc. I would really want to research that as a possibility. If I could not hold out any longer, then DBS it would be.

I'd just research things very carefully, and get several opinions from good, experienced neuros who know this area well. And I would want to know my personal odds of improvement, in every area (balance, rigidity, tremor, etc.) so I could really evaluate from a clinical standpoint what my net improvement might be.

Good luck, and keep us posted!

[dbiker2]

I had DBS/STN surgery in 2002 and would do it again in a heartbeat. Dr Gary Heit at Stanford Medical Center did the surgery. 85% of my symptoms were improved with a 92% overall improvement. I have had the batteries replaced last year and a broken wire replaced. As I understand it, the area of the brain for gait and balance is different and at the present time its an either/or situation. Good luck.......

[chasmo]

we have some of the best neurologists and surgeons who particiipate in our group and a wealth of knowledge and experience also.


Charlie

[Jim091866]

I'm going to UF next week to be evaluated by Dr. Okun!!! I had dbs and I still have to take lots of meds. I had the surgery in 2007 in Sanford,FL. Have you talked to them at UF? They are very, very personable and helpful. I can't wait!!!

[paula_w]

just mentioning that Jim and i have exchanged PMs and not have it look like I didn't see or ignored this. His appt. is at the end of the month.

thanks,
paula

Originally Posted by Jim0918

I'm going to UF next week to be evaluated by Dr. Okun!!! I had dbs and I still have to take lots of meds. I had the surgery in 2007 in Sanford,FL. Have you talked to them at UF? They are very, very personable and helpful. I can't wait!!!