NeuroTalk Support Groups - Went in for Requip...left with DBS?

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- - Went in for Requip...left with DBS? (https://www.neurotalk.org/parkinson-s-disease/112566-requip-left-dbs.html)

Quote:

Originally Posted by aftermathman (Post 611663)

try Stalevo as a constant release, you should be evening out the Ldopa rush as much as possible.

I know it is a personal thing to decide whether to have DBS but with the associated risks of brain surgery you have to be 110% sure. This form of communication is not ideal but you sure don't sound 110% sure to me.

Personally I would try every drug option, the fact that your Neuro hasn't even suggested CR drugs but has suggested major brain surgery staggers me. I wonder at peoples motivations sometimes and I would seek advice from another MDS.

No one will ever persuade me that DBS is anything other than a last resort.

Neil.

Defnately agree!..Stalevo gives me more the a half hour of on time, and the on time is quality..I would definately try Stalevo first, before I go for DBS

I was taking 3 x 50/200 CR's daily, and they stopped working, period..I started 3 x 200's Stalevo, and it was like a miracle..Now I take 3 comtans, and 3 generic CR's, and it works almost as good

Quote:

Originally Posted by made it up (Post 611639)

Hi Laura,
Personally I think the decision of when to have DBS is a personal one and only you can answer the "when" part.
Compliance on your part and a healthy positive attitude which you seem to have from looking at your posting is also (I think) desirable if not a necessity.
I had DBS 6 yrs ago and will be forever grateful for the normality it allowed which I'd up until then thought was gone for good.
One of the group members here Charlie founded a website called yahoodbs...whatever. Help me out here Charlie! You might get some help from them esp. if you're in U.S. which the majority of the members are.
Lee

Go to Yahoo groups and search DBS surgery.

ALl of us are unique in our disease and its treatment.

By all means get a second opinion.

try mixing your sinemet (crushed up) with orange juice and figure out how to take it in hourly doses, This works extremely well for my friend Nikki. It is labor intensive and a pain to do, b ut she has NO offs like when she took it normally.

Charlie

Will consider everything...

Thanks everyone for the suggestions and support you posted here and privately. I will research all thoroughly and most definitely try Comtan before moving onto any more serious consideration.

Has anyone else heard that in undergoing DBS at a milder state of disease will somehow clinically slow down or arrest symptom progression? I have heard this anecdotally and have seen one study supporting this. I'm wondering if this has something to do with my doctor's rather aggressive treatment approach or if Medtronic is marketing itself differently and neuros falling in line?

Laura

Quote:

Originally Posted by Conductor71 (Post 612100)

Man, where to begin! Your PD merrily goes on its way, masked by your DBS. There is alot to discuss! I usually wind up talking people into delaying their DBS. If you have ANY Doubts, I'd suggest you wait. You'll KNOW when its your time.
Do not worry about possible complications. The only one that is statistically relevant is the 4-8% post op infection rate. These numbers are from large institutions and they are the only one I put stock in. Voice issues are about 25% the complications. I ask prospective recipients,"do you want to have to repeat your McDonalds order or do you want to be able to drive through?"

The DBS is truly miraculous. If you don't beliieve me, just ask a DBS'er to turn theirs off!! They won't do it. I still take no meds, save for an ocassional 25/ 100. My balance is shot but the STN target is not effective for that.

Anyway Laura, if you want to call me, I have tons of info for you, DBS'ers for you to talk to.

Charlie

A study at Vanderbilt.

Laura,
Several months ago I read about a study at Vanderbilt U. in which they were recruiting PD patients who were still in early stages of the disease in order to try to determine if DBS administered early in the disease process could delay or arrest progression of symptoms. I have heard nothing more about the study since then. Recruiting subjects may have turned out to be more difficult than they anticipated.
Robert

Laura, One more thing to consider and ask about (as if you don't already have enough) is that previous brain surgery and specifically DBS may exclude you from future PD clinical trials.
linda