Has anyone investigated or had a focused ultrasound procedure done. I would like first-hand information, as I am looking into it for John.

[mariecoppola]

Focused ultrasound

[pvw2]

See healthunlocked.com/parkinso...

[mariecoppola in reply to pvw2]

Thank you

[Hidden]

healthunlocked.com/parkinso...

Some good info^

[mariecoppola in reply to Hidden]

Thank you

[lenamm]

Yes I had pallidothalamic tractotomy in Switzerland in April of last year. It gave me my life back! Very pleased. Had unilateral, hoping to have side two this year.

If you are on facebook join our group facebook.com/groups/6095308...

My general info on FUS

Focused ultrasound is a tool - it is a way of directing focused ultrasound with MRI visualization. It can be used for many surgeries all with different outcomes. To talk about FUS without naming the surgery tells nothing, it is like saying a doctor used a scalpel without naming the surgery.

Focused ultrasound is a way to do surgery. You are permenantly destroying a part of the brain. It is something to consider vs DBS. It is not done with early disease. It is brain surgery we are talking about. No incision is needed and side effects are rare but there is risk.

There are three surgeries for Parkinson's. PTT (pallidothalamic tractotomy) 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 dominant PD and is FDA approved and can only be done on one side. Pallidiotomy is US is for dyskinesia and is in trials in the US, Canada, maybe UK but seems to treat different symptoms as well, also only one side can be done. I have less info on the surgeries besides PTT since I did not go through them. At this point only medication resistant folks qualify for FUS surgeries (i.e. meds no longer work or side effects very severe). So if you have never been on meds this is not an option.

Good links

fusfoundation.org/diseases-...

sonimodul.ch/parkison/ - the only place to get PTT unilateral or staged bilateral

[Despe in reply to lenamm]

What are the non-motor treated? Thank you!

[lenamm in reply to Despe]

PTT does seem to help some with non motor. My only non motor was anxiety which is way better now. I know other PTT folks where it helped with brain fog and constipation. I can not speak to the other two FUS surgeries.

[Despe in reply to lenamm]

Thank you! Executive function improvement (initiative, motivation, etc.) is a very significant result.

Should we decide (husband to have a FUS procedure) it will definitely be PTT!

[mariecoppola]

Thank you for that information. My husband had genetic testing done and they found that his dystonia and Parkinson's disease are non-responsive to carpidopa/levedopa. His dystonia in his neck is also non- responsive to botox injections. When he takes c/L his dystonia gets much worse. Our new neurologist is suggesting DBS, but my husband is not on board with that. I thought that perhaps this would be an alternative for him.

[lenamm in reply to mariecoppola]

My worse symptom was dystonia and yes medication made it way way worse. I now have zero dystonia on my treated side.

[mariecoppola in reply to lenamm]

That's incouraging. I believe they do this procedure in NYC... Close to home.

[lenamm in reply to mariecoppola]

The surgery I had, PTT, is only done in Switzerland. The one in the US, thalmotomy just treats tremor not the other PD symptoms like dystonia, etc

[mariecoppola]

Oh, I see. Thank you, and I'm glad it helped you!