Amy Lindberg brought this to my attention... - Cure Parkinson's

Cure Parkinson's

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Amy Lindberg brought this to my attention describing it as the mother load on FUS. Indeed. List all the trials and treatment sites.

MBAnderson profile image
23 Replies

fusfoundation.org/diseases-...

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MBAnderson profile image
MBAnderson
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23 Replies
jimcaster profile image
jimcaster

This is great! I am still baffled as to why Pallidothalamic Tractotomy (PTT) is not more widely studied and/or available. It seems to be able to treat a much broader array of symptoms, while the other forms of Focused Ultrasound seem geared toward addressing only one symptom (tremor or dyskinesia), depending upon which type is used.

Drummer67 profile image
Drummer67 in reply to jimcaster

1000% agreed Jim! the more i read the more I can not understand Why FUS PTT is not being studied in the US as it appears so promising.Why does FUSfoundation.org not "carry the ball" On this???????

MBAnderson profile image
MBAnderson in reply to Drummer67

I believe that's the purpose of the foundation -- to spread the word.

lenamm profile image
lenamm in reply to jimcaster

It's a safer and better procedure because you only need a 4-5 mm lesion to completely destroy the PTT but when I was there for my last surgery I learned if it is done poorly it is way more dangerous as an important cognitive center is right next door. Sonimodul does two a week but if you start trying to do many a day with inexperienced surgeons you could be in for disaster . Maybe why more surgeons don't want to take it on.

Despe profile image
Despe

"Focused ultrasound is an early-stage,. . ."

Also, Summary of Workshop "Patient Selectionl Patients with early/mild disease (around 3 years post-diagnosis) without neurodegeneration.

So hurry!! Not good.

Trixiedee profile image
Trixiedee in reply to Despe

I’ve had Parkinson’s for 20 years and it worked wonderfully for me.

Despe profile image
Despe in reply to Trixiedee

I know as you have said before that you have had PD for 20 years. Why do they include duration of PD as a criterion?

lenamm profile image
lenamm in reply to Despe

For PTT they do not beyond that you have to have non medication responsive disease for at least a year.

reedboat2 profile image
reedboat2 in reply to lenamm

What’s the logic behind the medication resistance criterion? Thanks- JG

lenamm profile image
lenamm in reply to reedboat2

The PTT has no normal function when meds don't work anymore is safe to destroy.

Trixiedee profile image
Trixiedee in reply to Despe

Plenty of people have had FUS who have had Parkinson’s for under 5 years. As Lena says, it’s based on whether the meds work or not.

chartist profile image
chartist

Thank you for the link, Marc!

Art

jeeves19 profile image
jeeves19

Can you have FUS if you have had DBS?

MBAnderson profile image
MBAnderson in reply to jeeves19

Yes, but only if all the hardware has been removed.

lenamm profile image
lenamm in reply to MBAnderson

Which is usually not possible without causing brain damage unless done soon after implantation .

Trixiedee profile image
Trixiedee in reply to jeeves19

It’s really rare to have DBS hardware removed and the rare occasions I have heard about have caused a stroke.

jeeves19 profile image
jeeves19 in reply to Trixiedee

😕

Kia17 profile image
Kia17

Hi Trixiedee

For how long will the efficacy of FUS last? Is the procedure reversible? Does FUS affect on brain’s executive functions?

Any improvements on non motor symptoms?

Trixiedee profile image
Trixiedee in reply to Kia17

Nobody knows how long it will last as it hasn’t been practiced for more than about 7 years. However I have a friend who had a thalmalotomy surgically about 30 years ago and the effects are still there. So I believe it’s permanent. It doesn’t improve or worsen executive functioning as far as I know. Not in my case anyway.

Trixiedee profile image
Trixiedee in reply to Kia17

The main non motor symptom that improved with me was anxiety and vertigo that was caused by Sinemet. I’m still taking Sinemet but with no side effects.

Kia17 profile image
Kia17 in reply to Trixiedee

Thank you very much Trixiedee. Wishing you all the best.

Trixiedee profile image
Trixiedee in reply to Kia17

Also it isn’t reversible but the results for myself and everyone I know are so good that they wouldn’t want it reversed.

Kia17 profile image
Kia17 in reply to Trixiedee

Amazing. Thank you

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