Focused ultrasound in Parkinson's disease... - Cure Parkinson's
Focused ultrasound in Parkinson's disease: A twofold path toward disease modification
For those who are interested in reading the full article
filebin.net/2cv3729robh3lfd...
Long and complex, but a good paper. While this paper is about FUS, it provides a lot of other good info about progression and stages.
Wish you best of luck....we are rooting for you
Thank you.
The redirect expired on that information.
I mentioned yesterday in another thread that I'm having FUS pallidotomy done 8/26.
Where??
Wexner Medical Center/Ohio State University at Columbus.
Good Luck! Let us know~
Thank you
Please
Is this the only place offering in the US?
No, there are about 1 dozen locations and they are listed on the FUS Foundation website and on the manufacturer's website, Insightec. I do not know if all of them are still recruiting, but many of them are.
All of the locations are eager for customers, so if it sounds like you don't fit, you should contact them anyway, because they are using loose definitions. This pallidotomy trial is stated for PWP with dyskinesia, which I don't have. Far as I can tell, if your PWP, breathing on your own, don't have a metal plate in your head, and weigh less than 400 pounds and can fit in an MRI machine, they'll take you.
The paper Iqbal link to indicates it may slow progression. The benefits for one person on this forum lasted only a few months, but there are others who had the procedure done in Switzerland for whom the benefits of lasted 6 years. They gave me an expectation of 18 months. That would give me enough time to ramp up my exercise, do a little travel, and pretend I'm a normal person.
Risk, i.e., adverse events are negligible.
We were very impressed with the doctor who will be in charge of the procedure. He spent 90 minutes with us talking about PD and the procedure.
Congratulations Marc, I hope that goes very well for you.
Can I ask about the cost? The Swiss group apparently charges around $30k or $35k.
I understand that in the US, FUS treats only 1 side of the body at a time, while the Swiss FUS treats both sides at once. Correct me if I am wrong-
Swiss team does one side at a time, as far as I know. Maybe there are instances of them doing two sides, but I haven't heard about that. They also do a different operation. See my comment below.
The clinic in Switzerland only does unilateral as well. They are open to doing the other side of the brain one year later depending on conditions. Far as I know, no one is doing both sides the brain at this same time because the risk of adverse events, impaired speech and walking, it is apparently higher.
Elliott,
Since it's a clinical trial, the cost is free. We live in St. Paul, Minnesota, so we have to bear the travel expense, otherwise the manufacturer covers 100% of everything. Thank you for your well wishes.
Did not know you lived in St Paul. I'm in Mpls!
The SoniModul clinic in Switzerland charges $35,000. I don't know what the clinic in Zürich charges. You might want to check the clinics in Israel, South Korea, and Japan.
Best of luck. I hope it works well for you.
Thank you
Good luck, Marc. I am so very happy for you.
Thank you
I've long been interested in FUS. Let us know how it goes.
will do
where you having it done
Wexner Medical Center/Ohio State University at Columbus
Wish you all the success
Hi MBAnderson,
I pray it goes well for you.But what is the success rate for this procedure? Also I understand it is more beneficial for tremor dominant PD.
Thank you. I understand adverse events are pretty low and success rates probably vary, depending upon how successes is defined. I believe I'll get some relief and I will take whatever I can get. It is free, so why not.
Thx!
It sounds like there are a few different varieties of Focused Ultrasound surgeries being undertaken to treat PD.
1) This paper mentions the subthalamic nucleus, and the authors are undertaking a clinical trial on subthalamotomy.
2) MBAnderson reports that he is going to be having a pallidotomy.
3) The Swiss team does a pallido-thalmic tractotomy.
Correct. The differences are the target area. The equipment and the procedures the same.
What is TUS?
yes what is TUS
All the best, Mark! Will look forward to hearing good news from you. 
I got the sham procedure yesterday. Boohoo. And still in the hospital. I have a shaved head and look like Bruce Willis. 4 hours in an MRI machine for nothing. Ugh
For those like me for whom English is not their first language, I just looked up "sham procedure":
Placebo surgery, faked surgical intervention.
So sorry MBA.
Are you thinking of getting the procedure done in Switzerland?
The clinics in Switzerland will not take Americans because our courts allows to sue for in hospitals in American courts.
I know if an American who had this done at Sonimodul in Switzerland.
I do too.
Here is the reply to me.
From: Stieglitz Lennart [mailto:Lennart.Stieglitz@usz.ch]
Sent: Monday, June 17, 2019 11:21 AM
To: 'Marc Anderson' <marcbanderson@gmail.com>
Subject: AW: Your question about FUS treatment
Dear Mr. Anderson,
I feared a little bit you were from the USA.
I am very sorry to tell you, that the Swiss government forbids treatment of US citizens (except in cases of emergency).
The reason is, that according to US law, legal action against the hospital can be brought before US courts, despite the fact, that contracts and treatments are localized in Switzerland. Our insurances are not fit for that and one unfortunate legal case could ruin the hospital.
Therefore, I fear, I cannot offer you a treatment at our hospital at all. I apologize for the inconvenience.
Kind regards,
Lennart Stieglitz
Marc, are you sure you contacted Sonimodul? Because I’ve never communicated with anyone with that name there. And it’s a different email address.
Yes, I am certain it was SoniModul. I'm not surprised they use different email addresses. His answer may have been sent from a different location or computer. I did not contact the clinic in Zürich. I was in communication with 2 different people.
I think/hope you are being facetious, Marc. Obviously, we are all cheering for you and are confident that you did not undergo a sham procedure.
they will do the real procedure on me 3 months after the sham procedure. That is when the placebo evaluation. Is over. After having this much time and brain-damaged invested I'm going to elect to have the real thing done.
We just got back to our hotel from the hospital. We leave in the morning driving back to St Paul. I can explain better when I have a computer.
Safe travels and continued best wishes!
Marc,
Placebo FUS? I don't understand. . . 
It is disheartening.
I hear you, so sorry, Marc. Personally, I am against any trials.
Did they tell you it might be the sham procedure when you were accepted into the study?
Yes, one third were randomized to the sham.
You are smarter than the doctors involved as they don't even know whom has gone through the placebo (if it's double blind trial) BTW how did you come to know that?
I know it was a sham because my trimmer was the same coming out as going in. With f u s the trimmer stops during the process.
I actually know how to spell that's voice recognition software
They keep doing sonication until the tremor stops. They did 11 sonication Smith me in the tremor was not impacted.
In this case the doctors know it is a sham or not because they either turn up the heat or they don't.
Marc,
Now that is what I call a "sham" and a definite let down!!!
I hope the Bruce Willis reference was to Bruce circa 15 years ago, otherwise that would be a let down also! 😉
I can't wait for you to get the real deal! A shame you have to wait for it now though.
Art
Oh no, how frustrating! 😞
I have not been following this thread, but I take wild guess... He had this procedure done as a part of a research trial... some people got the real procedure done... some people got nothing done (a placebo).... he knows he got the placebo, since he feels no different...
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