i'll refrain from commenting on your posts. best of luck.

I haven't said a bad word about DBS or sinemet. Don't know where u got this. Merely urged caution. I still think both are vital and helpful treatments. You are reading something into my words that just isn't there. All meds and surgeries deserve caution and education. That is my only point.

I'm seriously considering signing up and see if I qualify. I've done my research and there is very strong evidence DBS early in PD treatment leads to a longer better quality of life.

"Honestly how does zapping the brain with electricity stop the progression of PD. The answer is it does not or it would have already jumped glaringly out of the background. "

Dogma, statements like this are counter productive. This is what the study is trying to prove. In my opinion waiting till all medications become basically non-effective before getting DBS is a mistake. With all the studies being done for gene therapy and stem cell with basically complete failure so far DBS is looking better and better.

My unproven guess is that DBS is just replacing what a normal non diseased brain would be doing which keeps the motor neurons from atrophy and early death. The trick is figuring out what signaling your brain responds to, and getting it to the proper area in the brain. That is the failure in most of the bad experiences people have had with DBS.

[QUOTE=cbrf1wr;1074346]I'm seriously considering signing up and see if I qualify. I've done my research and there is very strong evidence DBS early in PD treatment leads to a longer better quality of life.

"Honestly how does zapping the brain with electricity stop the progression of PD. The answer is it does not or it would have already jumped glaringly out of the background. "

Dogma, statements like this are counter productive. This is what the study is trying to prove. In my opinion waiting till all medications become basically non-effective before getting DBS is a mistake. With all the studies being done for gene therapy and stem cell with basically complete failure so far DBS is looking better and better.
QUOTE]

Thanks cbrf1wr, you're spot on. Of course we don't know at this time if DBS is neuroprotective. That's the whole purpose of the study in the first place. The researchers have proposed a hypothesis, shown some proof of concept information, and are now going to test the theory. Isn't that the purpose of clinical research? It's not like there is no basis for the theory. DBS has been shown to be helpful to many PwP. Like you, I've also researched this and there is evidence that done early on, DBS improves quality of life. As I'm someone with early stage PD, I'm certainly happy that this study is going forward.

d0gma, not trying to be argumentative here at all, but just because you can't understand why DBS could stop progression doesn't mean that it can't be true. None of us know the answer. That's why they run the studies to try and find out.

I suggest we respect the views of other people even when we disagree with them. In my opinion, this forum is made stronger if we have a diversity of views that are well argued, and made weaker if people are scared to post for fear of criticism. If you must criticise, criticise the argument, not the person.

On the substantive issue, my assessment of the risks that come from surgery, weighed against my assessment of the likely gains, are enough for me to decline to take part.

I like the idea of non-invasive electrical/magnetic stimulation and would give this priority over research into earlier DBS.

John

I fully agree with your assessment based on our current knowledge. However, don't you think that assessment might change for early stage PwP if research were to show the procedure to have neuroprotective or progression slowing capability? That's why we do research, to move our knowledge of the science forward.

With regard to non-invasive procedures, again I fully agree. In fact, I was just invited to participate in a new rTMS study that will begin recruiting later this year. I'm doing my research now to determine if I will volunteer to participate. I've read a few studies of interest out of Japan, and I know UCLA is doing some research. I would appreciate input from anyone with some knowledge on this procedure.

A lots of info on DBS procedures and research in this book, Chapter 5, with contact names and addresses:

http://books.google.ca/books?id=zHTm...ratrol&f=false

I) respect for posters is pivotal even if you do not agree with the post.
Ii) No one is drilling a hole in my head except as an absolute last resort. Too risky, brain surgery is never routine.

Take care,
Neil.

This is where I'm coming from. Unless there is proof or this is a last resort nobody is operating on my brain or any other part of my body. Even if it meant living with the symptoms. There is a non-trivial risk of death and total disability just from the surgery.

The other things to consider are that DBS does not always work. There are many accounts involving "tuning" the DBS program. One woman in Denver spent three years unable to speak because the docs could not tune her device. Others have lost the ability to think rationally. Is this really worth the risk considering early stage symptoms. My opinion is no. Yours may be different. It seems that nobody is discussing that this surgery has a good chance of not working or making things much worse for minor early onset symptoms.

These are the things I was trying to point out. Ultimately it is each person's decision. I respect your opinions. Too bad a few people have no respect for others. Several people in PM's warned me about this site and a small element attempting to drum out all those that did not agree with them. tsk tsk. That seems far more problematic to me.

As far as being counter productive? I guess if you have an agenda statements involving free speech and information might be counterproductive. I never thought more information and different opinions in an arena like a forum were counterproductive. How is information ever problematic?

Well your GUESS would be wrong. It's pretty easy to find if you have done the research. It doesn't sound like you have. In actuality "The exact mechanism by which the constant frequency stimulation pulse affects nearby brain cells has not been determined." It is NOT KNOWN how DBS affects nearby brain cells. If you did the research why are you guessing?

The "theory" of how it works is also unproven. DBS is believed to compensate for abnormal activity caused by loss of the dopamine producing cells. If you are still in early stages then you do not have this abnormal activity. There is no proof nor is there any evidence that treating a condition (including this one) that does not yet exist would protect you from it. This is akin to taking antibiotics all the time and hoping not to catch a bacterial infection. The side effects would be prohibitive.

I don't know of any conditions where treating for the condition would cause protective situations. If that were true we could all be treated for cancer to prevent getting it. This makes about as much sense as the idea that eating animal kidneys makes your kidneys strong. Sure it might work but it's nothing more than a guess. Would it be worth undergoing chemo to possibly not get cancer? Not for me.

A large portion of DBS failures are attributed to selection of inappropriate candidates. To be a good candidate one must have a broad spectrum of symptoms which early progression people do not have. "Findings from a retrospective analysis of DBS failures attributed more than 30% of treatment failures to DBS placement in individuals who were not optimal candidates for surgery." Patients need to have advanced pd complicated by motor fluctuations, dyskinesias, or tremor.

"CONCERN EXISTS that operating on individuals earlier than 5 years increases the risk of operating on people with atypical PD." Meaning those kinds that do not progress or misdiagnosed etc. This was my original concern. And there are other significant concerns. "An increased rate of suicide in patients undergoing STN DBS for PD has been reported."

It appears there are some very real concerns that would preclude early operations. Even though on time is usually increased the risks, problems, and deaths are higher with DBS groups than with medication only groups in large studies.

"Despite the improvements seen in the DBS treatment group, the rate of serious adverse events was significantly higher when compared to the best medical therapy group (40% vs. 15%, respectively). Two deaths occurred in the DBS group. One death was due to a cerebral hemorrhage 24 hours following lead implantation." This was one death that would not have happened without DBS.

Additionally "The most common serious adverse event in the DBS group was infection at the surgical site. An increased risk of falls and dystonia was also more common in the DBS group. Additionally, when compared to baseline, participants in the DBS group demonstrated mildly diminished performance on several measures of cognitive function at follow-up. These diminished performances were seen in measures of working memory, processing speed, verbal fluency, and delayed recall."

My feeling is that possible death, stroke, disability, diminished brain function, suicide, diminished intelligence and ability are not a good risk vs reward payoff for a person who has very mild symptoms that are well controlled with medication for many years.

Additional risks
Skin Erosion: Patients undergoing DBS are at risk for skin erosion around areas where the hardware is protruding, which may cause tension of the overlying skin. Skin erosion may also occur around the surgical incision sites. Skin erosion can present as erythema, pain, scabs, and pruritus.32 Untreated skin erosion can lead to infection of the surgical hardware and potential removal of all of the DBS hardware, depending on the site and severity of skin breakdown

Infection: Infection of the DBS surgical site or hardware may result in removal of the DBS system. Hardware infections commonly manifest with erythema and drainage. DBS patients should report any symptoms of possible infection immediately so that timely measures can be taken to prevent serious complications.

I had horrible issues when I took agonists. If you have the same issues with DBS you are stuck with it in a more permanent way. "As noted previously, behavioral changes may occur in some patients following DBS, Even in those without presurgical behavioral issues, depression, anxiety, hypomania, apathy, personality changes, and aggression can occur.39 Impulse control disorders (analogous to those associated with dopamine agonist use) may also manifest after DBS implantation, and may include pathologic gambling, hypersexuality, punding (i.e., repetitive, purposeless behavior), and spending.40-42 Awareness and monitoring for possible behavioral changes are crucial during long-term management, particularly in light of findings of increased suicide following DBS surgery."

The additional risks of death, seizures, stroke, stroke symptoms (weakness, slurred speech, numbness, worse dyskinesia, infection, breakage of leads, removal of all hardware due to infection and the list goes on. No way would any of these risks have been worth it to me. If you can read that list and think it could work for you you are more optimistic than I could ever be.