[Stitcher]

My movement disorder doc told me today that the new school of thought is that DBS should be done early. That PWPs are being encouraged not to wait until they have lost too much function. That having DBS early, rather then later, allows the PWP to have a better, more functional life.

Any thought on this subject??

[chasmo]

that they are recommendiing it earlier. I think, however that one should wait until later because DBS does seem to have a finite lifespan.

Charlie

[@chilles]

I have had this discussion with my MDS on several occasions. I have felt that earlier rather than later makes more sense. The patient is younger and stronger. Why wait until the body is weakened, atrophied, and immunocompromized? Post op recovery should be faster with fewer complications. I am guessing, the original studies on DBS were done on older PD patients. Unfortunately, this is the criteria that insurance companies use to "pre authorize" and approve the surgery( At least iit is covered by most plans). I respect Charlie's personal experience and knowledge of the procedure, and would factor it into the equation. I am looking for that fine line when body functions do not meet your level of acceptance (what ever that may be for each individual ?). I would be curious as to what are the outcomes of the DBS surgery when compared between earlier verses later? How long does it remain effective?

Gary

[MireilleLaster]

I have had DBS in March 2000 at the age of 47 after 13 years of PD.

First surgery was in Belgium (where I live) and I remember the neurologist being a bit uncomfortble with the idea of operating on a young person as I was by far the youngest of their patients at the time.

My second surgery was done in Grenoble (with the initiators of the DBS technique) and at the time (2002), Professor Benabid was already in favor of operating on younger patients (with of course sufficient disability), before they become so handicapped that they loose their jobs. I for one went back to work after my surgery and have recovered all my ability to concentrate and stay focussed.

Now of course, everybody has its own story and background and what's good for one does not necessarily fits the other. As for duration of stimulation effects, I know of people with almost 10 years experience. I will be soon celebrating my 7th anniversary and should change batteries for the first time next week.

So, Carolyn, in my experience, I was much better off going ahead with surgery and I would definitely recommend such course of action.

Regards,

Mireille

[DaleD]

I'm not sure I can add much more than has already been said but will make a couple of comments. I have met 5 people who have had DBS personally and three have had very successful results. All three were in their late 40's to late 50's. The other two were not satisfied with their results and both were in their mid 70's or older. I know the two older ones felt their time was short and wanted results that probably couldn't be acheived because of physical limitiations due to age. The three younger ones were able to regain a lot of their activities they'd lost beause their strength was still strong enough to enable them to do so.

Carolyn, I think it is a personal decision you have to make whether you think you have progressed to a point that you feel you've lost the ablility to live the minimum style of life you want to live. I wanted to continue to work and it would have been nearly impossible if I hadn't taken the step when I did.

DBS in 2005 age 59 after 20 years of PD.

[Stitcher]

I just found it interesting that we even had that discussion today. My tremor was really, really bad due to the stress of the 90 minute drive...the torrential rain, city traffic, one accident to get around. I certainly never imagined that it would even be suggested to me. I had never heard of the recommendation to anyone prior to Stage 5 or late Stage 4.

After returning home I spoke with a PWP friend who said that her doctor has also suggested it to her and she is YO Stagel 2.

Dale, Dr. Shulman did say that age does makes a difference, as you saw with your two older PWPs. She indicated that between the physical lose due to age and the lose due to PD, the out come is rarely what was anticipated by the patient. But, that YO do very well, as you have witnessed with your friends.

[chasmo]

As Dale mentioned, I think age is a factor. Personally I was ready after 11 years on sinemet. (age 52)
I was having bad dyskinesia and painful dystonia, I was not a happy camper.
It is true that there are DBS'ers out there who are doing well at 10 years post-op.
There are those who are not. My voice is badly affected and I am tired most of the time. These symptoms are a small price to pay for not having dyskinesias and dystonia, for me.
You'll know when it is time for a DBS. Everyone is unique, of course, I think that it is important to get your DBS while you are young enough to enjoy the benefits of your DBS.

The trick to a successful DBS is getting the best team you can afford. For most that will involve some travel. There are more than a few teams that have less than stellar outcomes.
IF there is one piece of advice I can give, thats it.GEt the best team you can get to. Mireille had to have hers redone to get her desired result. She went to the best in the world for her redo and she got good results.
The reason for earlier surgery is to address quality of life issues. I think once you hit 10 years on sinemet and are maxxed out on your meds and are having bad offs, its time for a DBS.

Charlie

[ol'cs]

You know what a weiny I am when it comes to DBS (as are many of us). I phoned my doc who had talked to another neuro who i used to go to. He said"ya I remember that cs guy, tell him that he should get the DBS done at Columbia in NYC as soon as possible". My doc also said "things are getting smaller"; he really has my best interests at stake.
But, i still say that there is a small, non-neurotoxic molecule that can get those "compromised but not dead" dopaminergic neurons firing.
If Daffy is right, the SN neurons are just sitting there waiting for something to restore their function in numbers that will make a difference.
What have they tested? Apparently not gene therapy. Apparently not stem cells. Apparently not a host of supposedly "bad" things like MMDA, cocaine, heroin, and many many other small molecules that act on the receptorology of dopamine reuptake inhibition or dopamine release.
Somebody give me a good answer why dopaminergic cells are better utilized by coaxing by electical stimulation than by small molecules?
Untill the "real" data is in, I'm not bying DBS

[Howardh]

DBS has been of tremendous benefit to some and not to others. Being in the best possible physical condition is critical should the DBS option arise. Hopefully in my case (and others) the decision is years away. And with Gene Therapy looking all the more like a fantastic alternative www.neurologix.net DBS may never have to be a considered choice.

GO HARD SCIENCE

[Stitcher]

Howard...anyone...do you think the success of DBS has more to do with the skill of the surgeon?