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Deep Brain Stimulation

DBS New YOPD Deep Brain Stimulation

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#1 allshookup

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Posted 19 March 2013 - 02:15 AM

Hello everyone! I am new to the forums. My name is Joe aka "allshookup". I am looking for some insight about DBS Treatment. Can anyone help me?

Basicly nervous as all hell. I have been on all kinds of meds (sinemet, requip, requip xl, comtan, and zelapar) I will never take zelapar again, that one really screwed me up. I am currently 45, was diagnosed at 38. My doctor suggested DBS treatment. Was shocked when first heard about it. Basicly scared about it being a procedure on my brain. That falls up there with back surgery. Never will consider thar either. But after hearung my wife and kids comments about lifestyle in the last few months we depressing. They says I have been just a lump on a log lately. So talking to my wife, I have decided to make a life changing decision and go ahead with DBS treatment.

So if anyone could tell me anything please help?

If you had DBS treatment?
Know someone who had DBS?
You are going to have?
Joe (allshookup)

#2 jb49

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Posted 19 March 2013 - 06:16 AM

Hey there Joe,

I'm from Canada and just yesterday I went to a local Parky Club meeting and the guest speaker was a retired gentleman who had the DBS done in Toronto a few years ago. He looked very "normal" and although I was watching carefully I could see no telltale "Parky Symptoms" I asked during the question session how many pills he now takes and it isn't very much. He was about a year back and forth getting it set up and adjusted to its best performance level. To be eligible for the surgery in Canada, requires the candidate to meet quite particular criteria. His nuerologist now finds his symptoms are at a level of a newly diagnosed parky patient even though he was dxed at age 39 and suffered PD for over 20 years. Other points of his talk were he writes a humour column for a small local paper, has written books, addressed federal parliament, has an award named after him to recognize Parky volunteers, writes music and performs in a band.

Okay, it turned out good for him, and I know of others that have had great results. Check with Roger in the Open Form. I suspect that it has not been so successful for some but no one that I know of. Good luck to you Joe.

jb
Don't be hard on yourself, try your best and be strong!

#3 Beau's Mom

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Posted 19 March 2013 - 09:54 AM

I can't help you with information on DBS because I did not qualify for it, Joe. I did want to extend a hearty welcome to you, though, and tell you that whatever your experience with any aspect of PD, there will be someone here who will be willing to assist you. It's a great bunch of people!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#4 allshookup

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Posted 19 March 2013 - 12:20 PM

Thanks JB49 & Beua's Mom,

It was great hearing from you.
Joe (allshookup)

#5 Golden01

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Posted 19 March 2013 - 08:20 PM

Welcome aboard! I don't know much about DBS but figure it may be something I know more about down the road.

#6 christie

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Posted 20 March 2013 - 09:06 AM

Joe, you might find these discussions very helpful: http://forum.parkins...l__+deep +brain

Don't be scared of DBS. It's a relatively safe procedure. One might argue that it still is brain surgery... Certainly not an easy decision for you to make. Take your time. As much as you want. Try get as much information as you can, discuss all options with your neurologist, make sure this is what you want/need.

Whatever you decide don't forget that all treatment options for Parkinson's are far from a cure, have comparable pros and cons, significant side effects and limitations and that you have the right to deny any treatment you don't feel comfortable with.

PS: An alternative to DBS is the duodopa pump treatment.

Edited by christie, 20 March 2013 - 09:07 AM.

English is not my first language !

#7 INSeducate

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Posted 20 March 2013 - 12:53 PM

Hi Joe,

I wish you luck and just wanted to say there is also background material here (which I helped produce), that may help as you make your decision: http://www.neuromodu...heet_parkinsons (see "Related Information" on upper right, as well as the content on that page) . . .

Nancy

#8 AlanDAronson

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Posted 14 April 2013 - 09:54 AM

Hi Joe,

I just had DBS surgery last week. I am 50 and was diagnosed at 39. I too have been through all the drugs, and even Sinemet has become unreliable. I stopped driving about 6 months ago. I became reclusive and lost interest in doing much of anything. I rarely leave the house.

The transmitter will be activated and programmed in two weeks. I am very excited about it. You see, when the wire is placed during surgery, it is charged up while the surgeon moves it to different areas to test its effectiveness. For about 48 hours after that, I took almost no medication and moved about freely. It was amazing, and although the effect wore off, I have seen the future...

The surgery was done in two parts. On Monday, the wire lead was placed into the brain. This was a four-hour procedure. I was awake for a good part it so as to allow the doctors to check my response to stimulus in different areas of the brain. It was not painful, but it was tiring. I spent one night in the hospital. On Friday, I returned to have the electronic pulse generator placed under my collarbone and connected to the wires. This took about an hour.

The activation is set for May 2. I will let you know how it goes.


#9 KimAgain

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Posted 14 April 2013 - 11:10 AM

I had my DBS surgery four years ago. I don't regret it for a moment, but it is a personal decision and one that is different for everyone. Welcome to the Forum, Joe, and please, feel free to contact me with any questions I may be able to answer.

Good Luck,
Regards.
Kim





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