FUS question: Based on my understanding... - Cure Parkinson's

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FUS question

ion_ion profile image
16 Replies

Based on my understanding from the statements of people who had FUS dr. J said this procedure will stop progression (somebody correct me if I misunderstood).

In this situation I think it will be recommendation to do the FUS asap in early stages!? Is that right?

Marc and Lena, what do you think?

Thank you.

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ion_ion profile image
ion_ion
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16 Replies
lenamm profile image
lenamm

According to Dr J you have to wait until there is severe dyskinesia or meds no longer work as that proves the PTT has no normal function anymore and is safe to cut. So PTT is not done in early disease.

Grumpy77 profile image
Grumpy77 in reply tolenamm

".... PTT has no normal function anymore and is safe to cut. So PTT is not done in early disease."

Interesting, because this implies that the PTT is part of the brain and is cut off during the procedure. I wonder how that is done since FUS is a non-invasive procedure which means the brain surgeons don't physically cut open the skull and penetrate the brain during the procedure. How do they remotely cut off the PTT? ... and leave the cut part in the brain to disintegrate or rot off on its own?

lenamm profile image
lenamm in reply toGrumpy77

The 1000 ultrasound waves burn the tract where they come together - I now have a 3-4mm lesion where my PTT tract was. Non-invasive is relative (and never a term I use for FUS) - it is still brain surgery - just a safer form of it

lenamm profile image
lenamm in reply toGrumpy77

I should probably use destroyed or ablated instead of cut

Grumpy77 profile image
Grumpy77 in reply tolenamm

Thanks for the clarification, I think I have a better understanding of the procedure now. So compared to DBS it is less penetrative but the brain is still cut open during the FUS procedure

lenamm profile image
lenamm in reply toGrumpy77

No cutting - the waves penetrate the skull - each one coming from a different point so a single wave will not cause harm but 1000 focused on a point heat up that point and destroy it.

lenamm profile image
lenamm in reply tolenamm

Each wave has a different path to the target so only the target is destroyed.

Grumpy77 profile image
Grumpy77 in reply tolenamm

Ah, thanks

in reply tolenamm

Hi Lenamm. How are you doing now after FUS? Do you feel like you did pre Parkinson’s? Are you symptom free and drug free? I really want to undergo FUS even though I’m in stage 2 and have not started C/L. I wonder why you have to wait till everything goes to hell and you have no other options.

lenamm profile image
lenamm in reply to

Nothing gets symptoms 100% but I am 80-90% better and have no ons and offs anymore. I take either one 100mg Sinemet ER or two a day still - may eventually be able to stop that. Please join our facebook group where you will find more discussion - this is still a major brain surgery so you do not do it early or where there is a med option. facebook.com/groups/6095308...

beehive23 profile image
beehive23 in reply toGrumpy77

gamma ray knife is one way......cheers!

lenamm profile image
lenamm in reply tobeehive23

Different than gamma knife as you can go through healthy tissue but only destroy the target

beehive23 profile image
beehive23 in reply tolenamm

i know but someone asked about how they destroy the tissue...its the samer principle...............cheers.

Nitro53 profile image
Nitro53

What is FUS?

ion_ion profile image
ion_ion in reply toNitro53

Focused Ultrasound Surgery.

MBAnderson profile image
MBAnderson

I don't know how much flexibility there is in the selection criteria Dr. J has published (which means I don't know how precise our understanding of his selection criteria is) on his website and in his paper about 51 consecutive cases I posted under my profile, but my best advice would be, if you sure you want to go this route, don't disqualify yourself.

Otherwise, my understanding is the same as Lena's.

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