Hello dear ones!!
This is Sandy from Sandy's Parkie Porch...I have been on a very long leave of absence from life in general. In 2003 I suffered from a failed DBS and it has taken me this long to get back on my feet. I have written a book about my life experiences with PD and the failed DBS. If anyone is interested you may go to Publish America website and click on online bookstore and plug in the book's ISBN # 1-60563-268-6 . "I Shaved My Head For This?" will come up. The book has been put on sale for half off. $9.98. Are there any oldies out there? Toadie????Girl, where are you? Charlie? tnpeg?jes? Well it is good to be back....hope to hear from you all...I surely have missed you all.

faith and hope,
Sandy

Welcome back Sandy. I remember you from the porch. I was wondering where you had gone to. Sorry to hear that your DBS did not work. I had mine in 2004 and it worked real good. Again welcome back.

Eileen

Yes, Eileen,

I remember you. Good to hear from you. I am so happy your DBS worked. Where did you have your DBS done? I have not given up on the idea...I am still contemplating....Thanks for the welcome back....

I'd like to hear more aboout your DBS. You had a post-op infection, right?

Your "surgeon" screwed up a lot of people. Infections where rife there and so was pain. A DBS is not and should not be a "Torture session"!
I am so sorry that you had such a negative experience. DO know that there are many good programs within your reach.

your friend;

Charlie

Hello,

Good to hear from you CHarlie. My DBS was done at Winston-Salem, NC . It is a teaching facility. I have no doubt that there are better DBS programs out there. I have not closed the door on my options. It is a matter of trust and my current new neurologist is Chief of Neurology at Carolina's Medical Center. Dr. Iyer is very understanding of my trauma and he is giving me time and space. Yes, the initial DBS failed because of massive infection in both sides. It is encouraging to read all about the successful DBS procedures. I am thankful I still have my speech, sight, taste and smell and I am still alive to contemplate another DBS. Time heals alot....I am battling with emotional strength now more than anything. I have more or less become a recluse. I only get out to go to the Doctor....my confidence has taken a major blow...but I refuse to give up....again it is great to hear from you Charlie.

faith and hope,
Sandy

I had my DBS surgery at Mass General in Boston. Dr Ekasander did the surgery and I had a real postive out come. I just had my battery replaced in October. That was done in Worcester Ma. That was done in day surgery. Again welcome back.
Eileen

I wonder how many DBS surgery can any one person have?

faith and hope,
Sandy

hey sandy!
i've missed you so much
it sure is good to hear from ya
love and hugs
tammy

Neurostimulator battery changes?
For that I think a model that doesn't need replacing or can be done less often than the current one which can last 3-5 yrs on average is in the pipeline.
Sounds like you had a rough time with your original surgery, has it all been extricated and or is currently not switched on?
Charlie, I think you mentioned researching teams that have a low failure/ infection rate which is a good point.
It's still early days for us DBSers to undergo what seems to the not so deperate PWP like scary surgery. I personally think they'll have to rewrite the statistical data in years to come.
I had a terrible response originally to DBS over 4 yrs ago so my heart goes out to you Sandy.
5 months after the original surgery I had an electrode repositioned and my life changed for the better.
I sincerely hope you can find success further down the track.

Zippidie dooda zippidy aye.....wow you have made my day tam...I am going to e-mail you a long letter..so that we can catch up...''faith and hope,Sandy