lurkingforacure
You stated "with DBS, you are awake and they can move the electrodes around to find the optimal placement with no damage". This is not really true, or I might say we don't know if this is true.

I am not arguing against DBS, because I may one day be convinced that it is right for me. But researchers do not know WHY DBS works, and there has been damage done in some cases. For example, there are many cases where balance is worsened, and falling is how many with Parkinson's end up their last days in a wheelchair or even check out of this world.

Ablative surgery (thalamotomy and pallidotomy- both ablative surgeries) have been used for decades and never have I heard of balance worsening. The voice is another prime target of DBS. I believe there have been some cognitive issues following ablative surgery, but who knows? Maybe we need to ablate or destroy the clump of cells causing the symptoms to keep progression in check. (Just guessing)

I do know that when I underwent experimental brain surgery, I did not know all that could have gone wrong. Permanent damage can be done with a brain bleed caused by hitting a blood vessel with the probes used. And I did not take immunosuppressant drugs, often done to avoid rejection of the cells transplanted into my brain. I think that fact alone (that my body did NOT reject cells from another person) is a huge success!

And although I received benefit from the experimentalllll surgery, the trial was dropped, claiming it did not show enough efficacy in phase II. We get to a point where any kind of relief is welcomed, ablative or temporary stimulation.

They have done DBS surgery in Europe much longer than in the U.S. I was at a meeting where a neurosurgeon from Germany told me (without an examination - just observing me) that he would not do DBS on me. When I asked why he said, "Because of your balance issues," which used to be very bad. I still stumble around, but nothing like I did before my experimental surgery!

We need to discuss these procedures among ourselves as some surgeons and sponsors (not all) are not being completely transparent with us. The cost must be on the sponsor's side - but how do we assess the cost of a patient's quality of life.

In summary, I know many - (30+ patients) whose lives have done a 180 after DBS, and I know at least that many for whom it was only a short-term fix. I'm in search of something lasting and not so invasive. As I said before I would prefer a beam of light (even if it destroyed the clump of cells tearing my body apart) over a drill and knife. It is a very, very individualized decision.

Thanks to everyone for sharing.
Peggy