Ultrasound helping with tremors

[Xenos]

That takes place in Italy and aims at both essential and PD tremors.

medicalnewstoday.com/articl...

[MBAnderson]

"substantial... Improvement " in 37 out of 39 patients. Better even than B-1.

[Gioc in reply to MBAnderson]

“Of the 39, 21 had Parkinson's disease, and 18 had essential tremor. All of the participants had been experiencing symptoms for an average of over 10 years.”

[lenamm]

There are three FUS surgeries being done for PD

PTT 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 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.

I had PTT done eight months ago and am overjoyed with the results - 80-90% improvement on my treated side.

[ABDESSLAM1 in reply to lenamm]

What was the cost for PTT?Where did you have it done ?

Many thanks .

[lenamm in reply to ABDESSLAM1]

search FUS Switzerland and there is a whole thread on it. It is only offered in Switzerland and is 35,000 CH

[park_bear in reply to lenamm]

For anyone curious the Swiss franc is currently trading at parity with the US dollar

[nv2013 in reply to lenamm]

Lenamm, I have been trying to connect to the clinic (sonimodul) for the past 2 weeks and I have had no success. I have emailed them via the website and also called. Nothing yet. Do you have any advice?

Thank you🙏🏼

[lenamm in reply to nv2013]

It usually takes about two weeks for them to get back. Also make sure and check your spam.

[lenamm in reply to ABDESSLAM1]

Here's the link healthunlocked.com/parkinso...

[Fighttolivenow in reply to lenamm]

Hi lenamm. I cant tell you how much hope your story gives me and thats half the battle with this thing we re dealing with. Im looking into getting it done also once C/L stops being effective. My mother also has PD, and if my condition is amything like hers it can go downhill pretty fast.

Please continue to post on your condition and dont forget the forum once your life gets back to normal....there are many more folks eager to learn and know about the long term viability of this therapy. You re very brave and generous to be one of the few early patients of this procedure and generous for sharing your experience whether negative or positive.

[MBAnderson in reply to Fighttolivenow]

Fighttolivenow,

If you would like to have the PTT procedure, I don't think you need to wait. I would contact them and submit the screening info they request and see what they say.

I know they say they're looking for people where Sinemet has run its course, but I believe there's some flexibility in that.

[Fighttolivenow in reply to MBAnderson]

Thanks, fact of the matter is that my regimen of 25/100 CL 3x a day with exercise and supplements is currently allowing me to live a fairly normal life. Tremors on the left side occassionally, loss of smell are the only bothering symptoms.

Im only 44 yo so Im trying to buy as much time as i can before the need for PTT. If the benefits of PTT lasts as they say 6 to 8 yrs it may be an issue if i get it too soon when im still able to live fairly normally.

[MBAnderson in reply to Fighttolivenow]

Good plan.

[S70AWD]

I've read about Focused Ultrasound. Is this the same thing? There are a couple of places in the U.S. doing it.

[MBAnderson in reply to S70AWD]

yes.

[Despe]

Xenos,

I understand it can only be performed on PwP who don't respond to meds any longer. That is not right, why wait this long?

[Xenos in reply to Despe]

Hi Despe, I think they prefer to apply this new technique to people who no longer have any other hope. There is no way back...

[MBAnderson in reply to Xenos]

I did not tell them that Sinemet had run its course with me and they've accepted me. I'm scheduled for March 11.

[Despe in reply to MBAnderson]

Marc,

They may have considered duration of your journey then? Husband and I have been thinking about contacting them, but we haven't taken that step yet.

[MBAnderson in reply to Despe]

What do you mean?

[Despe in reply to MBAnderson]

I mean they considered time since your diagnosis (10 yrs?) and accepted you for PPT?

[MBAnderson in reply to Despe]

YUP

[Xenos in reply to MBAnderson]

March 11 ? That means they have really a lot of patients. And I guess people willing to pay 35'000 CHF for a procedure took the best informed advice first...

PS - I'm having a look on YouTube with keywords :

"focused ultrasound for parkinson"

Interesting, to say the least.

A conference on FUS in the US, mentioning Switzerland's Dr Jeanmonod :

youtube.com/watch?v=Tgu80l3...(Not working as expected?)

[MBAnderson in reply to Xenos]

My procedure is scheduled so far out because I told them I might not be unmasked from the sham pallidotomy until February 10. Everyone else probably has a shorter wait time.

[AmyLindy in reply to MBAnderson]

Clarity please: “sham” implies you were essentially a “placebo” in the study, right? Good for you - so actively engaged in research . How far was travel?

[MBAnderson in reply to AmyLindy]

Yes, sham procedure means placebo. I was immobilized in the MRI machine for 4 hours for, essentially, nothing. I live in St. Paul, Minnesota and traveled to Columbus, Ohio for this.

[AmyLindy in reply to MBAnderson]

Wow: Respect ✊

[ConnieD in reply to MBAnderson]

Marc is your March 11th date for an evaluation or the actual procedure? Thanks

[MBAnderson in reply to ConnieD]

We show up Monday morning, March 9, for 2 days of pre-op evaluation, then the procedure March 11, then 2 days to post-op evaluation.

[ConnieD in reply to MBAnderson]

That’s great news! I’m happy for you!😊