MRI-Focused Ultrasound Undergoing Phase 3... - Cure Parkinson's

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MRI-Focused Ultrasound Undergoing Phase 3 Clinical Trial for Parkinson’s Treatment

Farooqji profile image
26 Replies

New technology that uses MRI-guided focused ultrasound to target areas of the brain affected by Parkinson’s disease and improve motor symptoms will be further tested in a pivotal Phase 3 clinical trial. It is the final step before the U.S. Food and Drug Administration (FDA) will consider approving it as a nonsurgical treatment for Parkinson’s.

parkinsonsnewstoday.com/201...

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Farooqji profile image
Farooqji
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26 Replies
saraoutwest profile image
saraoutwest

I am very interested in this procedure. I will be first in line once approved. Hoping the cost won't be outrageous but fully prepared for an outlandish fee.

hanifab23 profile image
hanifab23

Hi How you going with the light therapy

Farooqji profile image
Farooqji in reply to hanifab23

I am feeling better but cannot tell exactly whether it's due to light therapy or (mucuna + ashwagandha) which I have started a month back. I think I will be able to declare the tangible benefits of light therapy after one or two months of use

hanifab23 profile image
hanifab23

Thank you so much for responding please keep us updated on the progress

Juliegrace profile image
Juliegrace

I participated in the study for dyskinesia, which was not as successful as for tremor. Saraoutwest, if you want to consider traveling to Baltimore, I recommend you volunteer for the study. The procedure is quite expensive. It was estimated to be $35-40,000. Once it's FDA approved insurance may cover some of it, but that could take years. The people involved in the study at University of Maryland are terrific and I highly recommend taking the chance.

Trixiedee profile image
Trixiedee in reply to Juliegrace

What were the results for you? I have dyskinesia but no tremor.

Parkie- profile image
Parkie- in reply to Juliegrace

Hello Juliegrace

Did the clinical study you participated in involve a focused ultrasound pallidotomy?

Was it the "clinical study ExAblate Pallidotomy for Medically-Refractory Dyskinesia Symptoms or Motor Fluctuations of Advanced Parkinson's Disease?

Thank you

Juliegrace profile image
Juliegrace in reply to Parkie-

Yes, it was pallidptomy for dyskinesia. I was patient #5 in the open label phase of the study.

Parkie- profile image
Parkie- in reply to Juliegrace

Thank you.

Did you get any benefit?

Do yo know if it was the Unilateral Lesioning of the Globus Pallidum Pallidotomy?

Thanks

Juliegrace profile image
Juliegrace in reply to Parkie-

I’ve posted about this several times. I believe there is a response further down in this thread. It was the GPI and the benefits were temporary.

JANVAN profile image
JANVAN

Interesting, but a small privat clinic in Switzerland does it already since 2013.........with a lot of (not 100%) good results......and also since then payed back by the insurances.....

sonimodul.ch

Farooqji profile image
Farooqji in reply to JANVAN

Thanks for sharing

Do you know someone who has been there for treatment

Trixiedee profile image
Trixiedee in reply to JANVAN

A friend went there and was happy with the results. But her speech is now very slurred.

JANVAN profile image
JANVAN

Yes, but after a year, she had to go again for another treatment......because the symptoms came back.

Also, but not namely, 2 persons who weren't so satisfied......

I am in contact with the professor, but you can also mail him, to ask him more details (how much rigid-bradykinetic types treated, how much tremor types, how often need to have a second treatment..., etc.....)

I was last year there for a "treatment", but first they do a really extensiv neurological investigation and also that was much to early for me, I have a big marge still to increase the medikation and only then they do the operation....

JANVAN profile image
JANVAN

By the way, have you visit the homepage of Dr. Hinz,,,, and that Videos?? Rather special and spektakulär.....

I've written an e-Mail to Dr. Laurie K. Mischley, to ask what she thinks about him....

Farooqji profile image
Farooqji in reply to JANVAN

thanks for the info

JANVAN profile image
JANVAN in reply to Farooqji

Hi ! Did you contact already the professor in Switzerland ?

Do you have some more news about this procedure in Amerika (Phase III trial).......

How much aschwagandha do you take ?

rajbhai profile image
rajbhai

HI,did you see or heard about mri guided ultrasound treatment fixes tremors in parkinsons disease completely i saw on friday 23 /11/2018 a programe in news bulletin in prime tv at 5.30pm it aired this news that and also showed that a old lady in bed strugling to drink water b y her left hand it was shaking so badly they did mri guided ultra sound treatment instantly her tremor vanished and she was able to drink water from same hand completely stead hand ,i was sup prised now i am trying to contact them the doctors who performed this treatment ,in which hospital in australia ,

Farooqji profile image
Farooqji in reply to rajbhai

it's St Vincent Hospital

amp.9news.com.au/article/d0...

mistydog1 profile image
mistydog1

I'm taking part in this study taking place in Boston MA. The work they are doing in Switzerland is a little different. The two studies target different areas of the brain. One area is responsible for tremors, balance the other is just tremors.

Fighttolivenow profile image
Fighttolivenow in reply to mistydog1

Hi mistydog how is your trial going?

mistydog1 profile image
mistydog1 in reply to Fighttolivenow

I'm doing really well 6 months out and no return of any past symptoms.

Fighttolivenow profile image
Fighttolivenow in reply to mistydog1

Thats great to hear. So no more tremors , any other symptoms relieved? Are you able to reduce your meds?

mistydog1 profile image
mistydog1 in reply to Fighttolivenow

The pallidotomy is basically to relieve extreme rigidity . So at the base of my neck and spine were extremely painful every time I moved and the tremor of my leg and hand while not consistent were present. After my procedure no stiffness at all the tremors have been greatly reduced to the point I go days without any. Tremors only occur now if I push myself to getting really tired or forgot to take my meds because I was feeling so good and forgot to watch the clock. I still stick to 4 Rytary every day and 1 Azilect for now.

Davewt47 profile image
Davewt47 in reply to mistydog1

My husband has had PD for six years now, tremor and balance are getting worse! We’ve asked our neurologist about DBS,he maintains that DBS won’t help him. Does anyone have any experience with DBS? We’re now interested in the MRI. I feel we need to do something to attempt to slow the process! I’d appreciate any information you all can share .

mistydog1 profile image
mistydog1 in reply to Davewt47

There are a couple procedures available for PK patients. You have Thalamotomy which targets essential tremors, Pallidotomy which targets stiffness and rigidity both of these methods are much less invasive than DBS. You mention your husband has balance problems if it's due to his medication wearing off sooner than it should than one of these procedures may help. Neither procedure will "slow" the progression but they help to relieve the some discomfort that goes with this condition.

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