DBS

[maidar]

Does anyone have personal experience with DBS?

[Sadiesadie]

Yes and I would be happy to share it with you if you like.

[maidar in reply to Sadiesadie]

YES< Please share it!

[Sadiesadie in reply to maidar]

I had DBS done in 2004 ( dx with PD in 2000) bilaterally. I had to have the left side pulled out due to infection I got,from hospital. I debated having the left put back but not for long. Smartest move I ever made! I had a blood vessel n my brain that ruptured and caused me to loss short term memory for about two months but I would so it all over again!!! I was taking so much medication before the surgery, I also developed an allergic reaction to some of the medication. Before the surgery, I walk with a cane, had to write with my left hand and my whole right side of my body felt like it was dead.

Believe me I would go though all of it (including being an almost zombie for two months) all over again. I now take Pilates, and yoga and I went on two separate trips to Bali within the last year and I am going to Spain in 2014. It is not a cure all but it improved my quality of life beyond my wildest expectations.

The fact that I got an infection and had the blood vessel is extremely rare!!! The chance of infection is very slight then to add the blood vessel issue is almost unheard of but everything is back completely to "normal"

If you have any questions just let me know! I hope this helps. Please let me know what you decide.

[98Rob]

I had it done (bi-lateral) in Jan.2007. I've had PD since 1995. It was the best treatment choice I ever made.

[billk]

Yes I do have experience with DBS about 12 yrs experience. let me know if I can help

[maidar in reply to billk]

Please elaborate on your DBS!

[maidar in reply to billk]

do you know of any doctors in CT that do this surgery? My doctor at Yale just told me that they don't do it!

[billk]

My first DBS was in 2002, battery changes were as follows 2005,2007,2008, then rechargeable s 2010. I have been on almost all the med s that are available for us.

[maidar in reply to billk]

What is the surgery like and how long is the recup time?

[lilao]

Hi Maidar I had this surgery last year and it has made a huge change in my life although my walking has not improved greatly but I can honestly say I am 100% otherwise before dbs i could not wash dress or take care of my young family now i can do alll these things no problem so good luck with whatever you decide to do

[maidar]

Thank you for the input! I wish I could find somewhere in CT where they do DBS! My doctor at Yale doesn't do it and he really doesn't even think it is worth the time or money that it would cost! I am just so sick of my dystonia with my head always to the side and my toes curling!

Hope you keep feeling well!

Maida

[billk in reply to maidar]

Have you tried going to Medtronics.com they will be able to help you. Good luck in your search. If I can be of any more service. I would give my right arm to have the surgery and go thru the whole procedure again. It is so worth it!!!