Ultrasound helping with tremors - Cure Parkinson's

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Ultrasound helping with tremors

Xenos profile image
30 Replies

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

medicalnewstoday.com/articl...

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Xenos profile image
Xenos
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30 Replies
MBAnderson profile image
MBAnderson

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

Gioc profile image
Gioc in reply toMBAnderson

“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 profile image
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 profile image
ABDESSLAM1 in reply tolenamm

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

Many thanks .

lenamm profile image
lenamm in reply toABDESSLAM1

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

park_bear profile image
park_bear in reply tolenamm

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

nv2013 profile image
nv2013 in reply tolenamm

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 profile image
lenamm in reply tonv2013

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

lenamm profile image
lenamm in reply toABDESSLAM1

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

Fighttolivenow profile image
Fighttolivenow in reply tolenamm

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 profile image
MBAnderson in reply toFighttolivenow

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 profile image
Fighttolivenow in reply toMBAnderson

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 profile image
MBAnderson in reply toFighttolivenow

Good plan.

S70AWD profile image
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 profile image
MBAnderson in reply toS70AWD

yes.

Despe profile image
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 profile image
Xenos in reply toDespe

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 profile image
MBAnderson in reply toXenos

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 profile image
Despe in reply toMBAnderson

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 profile image
MBAnderson in reply toDespe

What do you mean?

Despe profile image
Despe in reply toMBAnderson

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

MBAnderson profile image
MBAnderson in reply toDespe

YUP

Xenos profile image
Xenos in reply toMBAnderson

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...

MBAnderson profile image
MBAnderson in reply toXenos

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 profile image
AmyLindy in reply toMBAnderson

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 profile image
MBAnderson in reply toAmyLindy

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 profile image
AmyLindy in reply toMBAnderson

Wow: Respect ✊

ConnieD profile image
ConnieD in reply toMBAnderson

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

MBAnderson profile image
MBAnderson in reply toConnieD

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 profile image
ConnieD in reply toMBAnderson

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

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