I am curious if anyone has seen or has more information on this new breakthrough. Does anyone have any experience with this procedure? I like to know more...is is successful, permanent solution, and if it’s done in the United States.
Noninvasive israel surgery that removes s... - Cure Parkinson's
Noninvasive israel surgery that removes shaking in Parkinsons
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MCC950
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It is called Focused Ultrasound (FUS) and there are few threads about it on this site.
First time was done in Switzerland and I think there are few places in US.
There has been quite a bit of discussion about it. Put "focused ultrasound" or "FUS" or "pallidotomy" in the search window to pull up the threads. Or, click on my profile as I started a thread about it a few weeks ago that has some discussion.
Thank you for starting a thread about it, MBAnderson. It sounds very promising. Have you or anyone else had this procedure done? Will read the thread. Thanks again
I have not had it done, but Lena has, see her comments on previous FUS threads.
Marc, do you know the difference in the FUS procedure done in Switzerland and what is being done in the US? Thanks
PTT is 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 is just for tremor and can only be done on one side. Pallidiotomy is US is for dyskinesia but seems to treat different symptoms as well, also only one side can be done. The US procedures have not been done long enough to know the lasting effect. I spoke to one woman who had palidiotomy and symptoms came back in three months.
there is a wonderful organisation - The Focussed Ultrasound Foundation - fusfoundation.org/ run by Dr Neal Kassel - FUS has already been approved for many applications - including by the FDA for Essential Tremor - google - focussed ultrasound for essential tremor - and see articles and videos
It is being done at UCLA. pdbuzz.com/wp-content/uploa...
My neurologist in Boston is at a hospital where they do this as well as DBS. He said what jeeves19 said, plus it is done on only one side.
“ It’s non-reversible, there’s no opportunity to tweak as with DBS and long term effects have not yet been observed. “
The SoniModul clinic in Switzerland has data for 5 years.
Plus their surgery can be done on both sides
Irreversibility would matter more if the adverse event ratio were comparable.
SoniModul publishes their data on their landing page, including adverse events.
There are multiple centers in the US. It is called and Neuravive the company that sells it..There are multiple centers in the US. I just called and Neuravive the company that sells it. There’s one in Seattle Miami and the newest one they have is in Nebraska. There are a few in the East Coast as well. Insurance does not cover it except for Blue Cross. Medicare is now paying for it which is groundbreaking. Out-of-pocket with out insurance it is $30,000 . It is commonly used for essential tremor as well but the same spot in the brain is involved. There are great patient testimonials . Procedure last about three hours in an MRI machine and also you have to have your head shaved. Great results with no recurrence of tremor. If you have had a deep brain stimulator put in you are no longer a candidate.
In Canada the health insurance pays for it. They have multiple centers as well
FBI
Have we any traditional science behind it?
So far I have this, others can pick up if they like.
fda.gov/news-events/press-a...
my.clevelandclinic.org/heal...
sonimodul.ch/home/parkinson...
A number of articles, deeply buried and not very easy to access, on the topic by this seller. I read the abstract of one of them, titled "Safety and accuracy of incisionless transcranial MR-guided focused ultrasound functional neurosurgery: single-center experience with 253 targets in 180 treatments"... I assume that this article talks about the method itself, rather than what happens when it is used to treat a particular set of symptoms or disease. But I can only assume it, because the article itself is behind a $45 paywall.
On the method itself, this was the critical phrase in the article Safety and accuracy of incisionless transcranial MR-guided focused ultrasound functional neurosurgery: single-center experience with 253 targets in 180 treatments:
"With the use of proper physiopathology-based targets, definitive therapeutic effects can be coupled with sparing of sensory, motor, and paralimbic/multimodal thalamocortical functions. Clinical efficacy, not analyzed in this investigation, will ultimately rest in proper target selection and optimized thermolesional coverage of the target."
The Journal seems to have some cred, but the article asked for $45 to read it. I don't have an institutional account anymore so I don't know if it is a true academic journal with traditional peer review; actually if it is Elsevier or similar, they might just charge everyone. if all the articles supplied by the seller of the procedure, this place in Switzerland, expect money to read the selection of articles they want to highlight to support the product they are selling, it could come into a fair amount. Also we won't know what is in the research that they filter out as not so helpful in making sales of the procedure. Maybe someone else can follow up on that.
In any case, the offered articles are "selected," by the seller of the procedure, meaning that we don't know what negative information or critical information may not have been included in the research, nor what the research base is.
At least this procedure, if done right and subject to the above qualification on proper use, doesn't seem to sound particularly dangerous...at least, in the results handed out by the folks selling it...but then we don't know yet what the side effects and adverse effects going forward are, those are in the article, and so we can't even determine if the research base is sufficient or valid or complete. So it would be a question to research before letting them ablate (burn out) a piece of your thalamus. The prospect of technology being able to do this kind of operation does sound kind of exciting though.
That said, I am not familiar with how rigorous the FDA is on research for approval of operational devices...except that I do suspect that the FDA maybe has few requirements, i.e., nearly none, for implantable devices...yes, that's right. Here's what I saw about that one:
nytimes.com/2018/05/20/opin...
He is the clinician who did the clinical studies and he explains why it works - Japan is doing one this year. Page works for me.
ncbi.nlm.nih.gov/pmc/articl...
Dr. J's clinical trial
ncbi.nlm.nih.gov/pubmed/303...
The first person the Japanese did
BTW I have had this surgery - it gave me my life back! 80-90% reduction of symptoms on my treated side
He has more people than he can treat - this is his life work to help people not a money making scheme. He carefully screens people and does two surgeries a week.
It is the pallidiothalamic tract that is ablated not the thalamus.
Here is an article on why the Japanese are clinical trialing his procedure
There is one center in Spain costs about 18000 €
Single testimonies are meaningless - wow just wow. Isn't single testimonies what research is built on. And the clinical study had more than one person. You have the choice to not get this surgery but please don't discount the experience of those of us who do - this is the reason I am one of the only people talking about my experience even though there are multiple people I have talked to privately with similar experiences to mine. It hurts to have people discount your experience and be so negative about it. I and the others I talked to are not stupid , we all did extensive research before committing to the procedure. I learned about it through my primary doc Dr. Laurie Mischley who is highly regarded in the PD community.
I read that piece. It says nothing beyond that a single procedure worked. No details, to documentation, nothing. ???
ncbi.nlm.nih.gov/pmc/articl... Just in case you missed the link -13 people - the first few he didn't treat well enough and he retreated.
It hurts? You are that fragile? I don't believe that. That's an odd thing to say, I should believe some anonymous person that it hurts that I would like evidence that a procedure to put radiation energy into my brain that is irreversible. Just observed, did not discount. Did not call stupid. You are the one reacting by accusing. Uh huh. res ipsa loquitur.
Meanwhile, asking for evidence is not being negative. Mentioning that the seller is the source of the info is not saying it is just a moneymaking scheme. Again, res ipsa loquitur. Not what you decide to add to it and fling back, thank you.
You make many assumptions about what other people say. So far the assumptions you've made about mine have been wrong. You offering to back up the risk other patients take? You offering insurance? No? Golly, why not? Does Dr. Mischley know you are claiming she endorsed this? So is SHE offering insurance?
What does FDA say about it all?
Reasonable questions, you need not have privately flamed me. And by the way, I deleted my own prior comment, while re-thinking it, nobody deleted me at all.. Another wrong assumption.
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