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Focused Ultrasound in Switzerland

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Old 04-16-2019, 09:59 AM   #1
trixiedee
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Default Focused Ultrasound in Switzerland

I have decided to see if I can have focused ultrasound at Sonimodul clinic in Switzerland. The neurologist there has the most experienced and 2 friends have had excellent results. I’ve collated lots of information for anyone who’s interested.

SoniModul - Focused Ultrasound Treatments against brain disorders

Frontiers | Anatomical and Technical Reappraisal of the Pallidothalamic Tractotomy With the Incisionless Transcranial MR-Guided Focused Ultrasound. A Technical Note | Surgery

Pallidothalamic Tractotomy for Parkinson Disease with 1-Year Follow-Up: A Case Report - ScienceDirect

First experience with MR-guided focused ultrasound in the treatment of Parkinson's disease

Summer Copeland - I put this video together to give a...

https://www.fusfoundation.org/news/p...ing-her-wheels

Posts made by Lena McCullough on https://www.facebook.com/groups/pd.fighters.united/

So I am now 24 hours post getting pallido-thalmic tractotomy by focused ultrasound. I am truly amazed at the difference in my body. I think in the future this procedure will replace DBS. At this point it is only done in Switzerland and it is not anything like the FUS done in the US. This procedure treats Parkinson's and not just tremor. I only had my right brain treated (left body) but I can go back and get side 2 done in a year if needed, however there is a chance that my right body will also correct. My rigidity is pretty much gone - I felt that about half way through the procedure, my fine motor is 90% back on the left and was already pretty good on the right, my tremor is 90% better on the left, it is actually worse on my good, right side now (but not worse than it was before). My dyskinesis is 90% reduced on the left and about 70% reduced on the right and I have already reduced by meds by 25% and may be able to stop completely. Over the next 3-6 months there will be some ups and downs as my body adjusts but overall I will continue to improve and as my right brain normalizes there is a good chance my left brain will follow. I have gone from not being able to walk distances, stand still or work to feeling pretty close to being a normal person :-) And so far his work has shown a stability of symptoms from when people stabilize for six years ( and maybe longer, he has only done this six years). He will be publishing this later this year.
I should add that at this point Dr. Jeanmonod only treats those who are medication resistant. I no longer had a therapeutic window.
One more edit for those asking. It is $35,000 CH for this procedure and it is not covered by insurance.

Bradykinesia and rigidity are the first to go - both of those imrproved by the time I left the machine by about 90%. He says tremor can take 3 months to go although mine is already much better. My dyskinesia was the worst for me - it is much better already although I'm unsure how much is the procedure and how much is the med reduction but it really doesn't matter does it.

So you continue to get better for 3-6 months and then in the six years he has tracked his patients they do not get worse. It may be that it is lifetime stabilization of the disease but only time will tell.

He has a very interesting theory about how this halts PD which makes a lot of sense to me and I look forward to his published paper later this year. I hesitate to use the words stop progression until it has been done for longer but six years is still six years.

I really hope his paper comes out soon. He talks about the loss of dopamine cells being the match that starts this track over firing inhibitory neurons. This is why just replacing with dopamine doesn't work longterm. The actual disfunction is more in the track that by the time you have PD has no needed function anymore (the brain has already made a new connection around it). It is just over firing inhibition on the physical, mental, and sensory parts of the brain.

He describes the lost of dopamine cells as the match that starts disease but that the disease is actually the over firing of the pallido thalamic tract (he can measure it on EEG but every one with true PD has this). This tract fires inhibition on the motor, emotional, and sensory cortexes leading to motor inhibition, emotional inhibition, and sometimes pain. The pallido thalamic tract is at the point of PD completely nonfunctional and has actually rerouted any necessary pathways already. If you cut the tract it not only treats the symptoms but seems to halt progression. It is not all about dopamine replacement or this and DBS would not work. Here is a very interesting paper by him https://sonimodul.ch/wp-content/uplo...ationsOnPD.pdf

I had no non-motor symptoms except a spike in anxiety which I am pretty sure was because of my motor symptoms. However Dr. Jeanmonod did say people he treated had improvement in brain fog type symptoms because you are freeing the emotional brain. 50% of his patients are able to stop drug permanently but remember he only treats though that the drugs are no longer working for either because of side effects or that they can't take enough. In my case I have been on 125mg Sinemet ER three times a day. with horrible life stopping dyskinesis I immediately reduced to 100mg three times a day with very little dyskinesis (just a little in my leg on the untreated side) and no true on and off. Just smooth all day yesterday. He wants me to cut down very slowly. It has been so long since my days are smooth - it is amazing!

To answer the question about why pallido-thalmic tractotomy by FUS is not widely done or known of even though the outcomes seem miraculous. For the most part lesion operations were stopped in the 90s and replaced with DBS. There are few surgeons that have done lesion surgeries and those who have done it are older and are not necessarily comfortable with new technologies. The newer neurosurgeons who are more comfortable using new technology like FUS have not been taught or ever done lesioning surgeries. Lesion surgeries like PTT need to be done well and exact - experience is super important. There are not surgeons lining up to learn. In addition there is a huge change in outcome with experience. The doctor I went to had a 95% reduction in treating Essential Tremor with FUS, in the US there is only a 50% reduction among our surgeons. And treating PD is even harder. Hopefully this will change especially with the Japanese picking it up. We need our doctors in the US and other countries to take notice and have an interest.
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Old 04-18-2019, 12:37 AM   #2
RooJr
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Great share!! Thank you!
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Old 04-18-2019, 07:49 AM   #3
lurkingforacure
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Default non-motor symptoms?

Does anyone know definitively if this can help non-motor symptoms, like delusions/hallucinations/PDD? Also, are you excluded as a candidate if you have any of those?

What I've been able to find so far is not promising, but it isn't clear. TIA
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Old 04-20-2019, 12:08 PM   #4
RooJr
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Quote:
Originally Posted by lurkingforacure View Post
Does anyone know definitively if this can help non-motor symptoms, like delusions/hallucinations/PDD? Also, are you excluded as a candidate if you have any of those?

What I've been able to find so far is not promising, but it isn't clear. TIA
Great questions. I strongly suggest you join the Facebook group. It's a closed group so you have to apply.

Parkinson's Disease Fighters United (PDFU) Public Group | Facebook

Cheers,
Kevin
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Old 04-20-2019, 02:40 PM   #5
RooJr
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Thanks again for posting. There is a research team at the University of Calgary, Canada that is also looking at Focused Ultrasound. I will inquire to see if they are collaborating with the Swiss.

Here is a 2017 link discussing the Calgary research.

Focused ultrasound offers promising alternative to invasive brain surgery | UToday | University of Calgary
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