Should we all contact the Michael J. Fox foundation to spur advocacy for Pallidothalamic Tractotomy (PTT), a form of Focused Ultrasound which has proved to be of great benefit to several of our members?
I believe PTT is the most exciting treatment for Parkinson's Disease which is currently available, but I am frustrated that it's only available in Switzerland. Maybe we can spur action through the Michael J Fox foundation. If you want to prod the MJF Foundation through phone calls, mail, or email, here's a link to contact them. I believe PTT should be readily available throughout the world and covered by insurance in the United States.
As it turns out, I'm in the process of writing a letter to the head of the Minneapolis VA and the national VA explaining that the VA could save tens of millions of dollars by doing PTT instead of, or in addition to, DBS. Not only is PTT cheaper than DBS, it's cheaper than 10 years of pharmaceuticals. When I was exploring DBS 5 years ago, I learned the VA spends $150,000 per. Getting everyone who is involved in that to shift to procedure that cost 1/5 as much is a high hill to climb.
Reducing the cost to Medicare and Medicaid of PD healthcare would move the ball.
If Medicare and Medicaid would cover PTT, that would bring it to the US faster than anything else. I don't know how you would get the ear of the top-level management of Medicare & Medicaid except possibly thru a senator or similar person. But, they would be resistant for the same reason as MJ FF - no controlled trials.
Perhaps another route are the (doctor)Associations (of neurosurgeons.) Dr. J was scheduled to speak at the neurosurgeon conference in April of this year, but Covid derailed that. If he were able to make presentations at appropriate conferences, that would move it along.
I agree that it would be a good thing that some of the MJFF staff and board be educated about it, but I don't see them advocating for it because there are no double-blind, crossover, placebo-controlled studies, although100 sham procedures would cost only $3,500,000 and MJ FF has provided grants of that amount for pharmaceutical trials. Another barrier, who is able to perform sham procedures?
I really don't see any of the big financial supporters, i.e., Medicare, Medicaid, insurance industry supporting it until there are controlled trials producing irrefutable data.
Whatever it takes, it needs to be an insurance covered option in this country.
Surgical trials are not nearly as extensive or expensive as drug trials. Problem is that one needs to have surgeons with the surgical expertise. See fda.gov/media/87603/download
I agree. That's 1 of my points. Who is qualified to perform a sham PTT?
Also, Jim has a point, i.e., is there an ethical consideration to performing a brain surgery on somebody which is of no value when essentially the same procedure could be performed on them and be of immense benefit?
It's a conundrum. Doctors don't, and as well they should not, be prescribing therapies where there is not hard data as to the safety and effectiveness, yet without placebo-controlled trials, will PTT ever meet that standard?
I assume they did not do sham/placebo DBS surgeries? Don't tell me they drilled holes in people's head and then inserted the electrical wire, but never activated it?
I think it's cruel and inhumane to make people endure sham brain surgery or to have to wait for the results of double blind trials when we have dozens, if not hundreds, of very successful outcomes with few, if any, complications.
Whoah!! Sham surgery is not necessarily (and rarely) required. Look at clinicaltrials.gov at DBS trials. In most, the comparison "treatment" is optimized drug therapy. Sometimes a cross-over design is used, so that all participants eventually can get the treatment. For example, see clinicaltrials.gov/ct2/show...
I signed up for the pallidotomy clinical trial and got randomized to a sham procedure.
I spent $6000 making 4 trips from St. Paul, MN to Columbus, OH, had the Novocain shots in my scalp which on the pain scale of 1 - 10 is a 10, had the bracket screwed my skull and then laid motionless in an MRI machine for 4 hours - all for nothing, nada, zip.
I'm still pissed off because I feel they should have reimbursed me for my cost since my participation was of great benefit to them and 0 to me.
I also had a palliodomy in a Boston study. Prior to having it the understanding was they would follow me for 4 years. They also offered that after my 3 month visit if they didn't give me the actual procedure I would be given the option to receive it . It turned out I got the treatment so I didn't need to make that decision a second time. I'm so glad I chose to have the procedure. Of course a pallidomy is different than a PTT they target different issues associated with Parkinsons
Misty, I think you are the 1st person to report having it. How long ago did you have it, which symptoms did it affect, how much relief has it provided for each of those symptoms? How are you feeling about it?
I had the procedure in October 2019. I had the pallidotomy which addresses dyskinesia. After the procedure you'll know within 24 hours if it worked. In my case it made a huge difference. You may find this as some interesting reading there an organization in Charlotte that's addressing the same issues you are focused on.
Marc (MB Anderson) was exactly who I had in mind when I made that comment. His initial sham procedure is one of the worst PD interventions I have ever heard of. Fortunately, his experience with PTT at SoniModul (and that of Lenamm, Trixiedee, and others) is easily the best PD intervention I have ever heard of.
To be given major responsibility in an important federal government department and then to undermine its mission, as has been done at the post office, one has to be a sociopath.
Just like pallidotomy for essential tremor and tremor dominant Parkinson's is approved by the FDA, the FDA would also have to approve PTT.
I hate to say it, but when I consider everything that's involved, I don't see it coming here in less than 10 years primarily because, as far as I know, no one is interested in it.
I don't think there are any PTT studies underway in the United States. There are other types of Focused Ultrasound already performed in the USA, but not PTT, which is primarily why I made this post. I think MB Anderson knows a little bit about PTT in Switzerland. 😉
I'm not sure why the procedure is being referred to as PTT in this thread . You may find more information using the actual name of the procedure as PTT is a coagulation test which has nothing to do with Parkinson's
Here's an excerpt from an explanation of the three types of focused ultrasound procedures which was written by lenamm, a member of this forum who has undergone PTT.
There are three surgeries for Parkinson's. PTT (pallidothalamic tractotomy) in Switzerland is the only one that can be done on both sides and treats tremor, dystonia, dyskinesia, bradykinesis and rigidity and results hold for at least six years (ie halts progression of symptoms). Thalmotomy in the US and other countries is just for tremor dominant PD and is FDA approved and can only be done on one side. Pallidiotomy is available in the US for dyskinesia and is in trials in the US, Canada, maybe UK but seems to treat different symptoms as well, also only one side can be done.
yes and yes to the third we do not talk of it but no one I know has had progression of symptoms on a treated side. To talk about it brings out the haters.
Can you get your MDS to elaborate? For it to be under FDA consideration, it would have to be performed in several centers here and I've never heard of it being performed here anywhere. I doubt the FDA considers surgical procedures that are being performed in other countries. Somebody has to apply for approval to perform here.
I think you're thinking of FUS Pallidotomy which is different than PTT. (Pallido-Thalamic Tractotomy.) They target different areas of the brain with FUS.
They are open label studies which means in a way they're not really studies. They're simply trying to document the safety and effectiveness as compared to people who do not have the procedure.
A tiny handful of us would agree with that. I suspect 99% of the Parkinson's healthcare community either has no knowledge or is skeptical or outright denies the effectiveness.
Marc, why do you think the PD Community is skeptical? I understand that the old methods with scalpels is a little scary, but Jeanmonod has an incredible track record with FUS PTT, right?
Who knows? It may be no more complex than inertia. It may be they're too heavily invested in DBS. It's probably a combination of factors, primary among them is they know very little or nothing about it.
There are about fifty of us in the world who have had PTT bilaterally - it is a small # compared to DBS. It is not going to be known or accepted overnight.
Dr. J and Dr. G are happy to train other surgeons but the US surgeons are not interested in learning PTT. It is a surgery that requires exact precision and they have such good success with it because they screen for a certain candidate and do two surgeries a week only. If it has mass produced there would be more errors and mismatches. You are hitting a small structure with other important structures nearby. It is safer than the other lesioning surgeries in skilled hands because the target is small but less safe in unskilled hands. Dr. Laurie Mischley talked to her surgeon friends in the US they have no interest in it until there is a ten year study which will be awhile. Meanwhile MJFj does not even talk about it as an option and those of us who found it were desperate and willing to take the risk on something new.
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