Focused Ultrasound in Switzerland - Cure Parkinson's

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Focused Ultrasound in Switzerland

Trixiedee profile image
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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.ch

frontiersin.org/articles/10...?

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

facebook.com/summercopeland...

fusfoundation.org/news/park...

Posts made by Lena McCullough on facebook.com/groups/pd.figh...

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 sonimodul.ch/wp-content/upl...

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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Trixiedee profile image
Trixiedee
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68 Replies
parkie13 profile image
parkie13

I'm so glad to hear that your getting relief. Thank you so much for posting and please keep us up-to-date on you're Parkinson's. Simply wonderful.

Juliegrace profile image
Juliegrace in reply toparkie13

It's not Trixiedee who had the procedure. She's looking into it. She copied and pasted a post from someone else in a Facebook group who had it. I was confused and had to read the post twice.

parkie13 profile image
parkie13 in reply toJuliegrace

Thank you for letting me know. Mary

Trixiedee profile image
Trixiedee in reply toparkie13

It’s not me, it’s a friend in the US. But I’m going to apply for it.

hanifag profile image
hanifag in reply toTrixiedee

did you have it done please kindly join me to the group

Icequeen10 profile image
Icequeen10

Thank you for the great information. This gives me hope.

Trixiedee profile image
Trixiedee in reply toIcequeen10

Me too!

saraoutwest profile image
saraoutwest

I’m really interested in this procedure. Is it $35000 CH per side? And what does the CH stand for. What Money value is this? Thanks for the info

Juliegrace profile image
Juliegrace in reply tosaraoutwest

I believe it is CHF which is Swiss Francs. The exchange rate for CHF to dollars is almost 1to 1 at this time.

JANVAN profile image
JANVAN

Very good post, Trixiedee !

I was visiting him already in 2017........he just lives 75 km away from me.....

The neurological exam, was the most profound I had until now....

„Unfortunately“ I am not already on a therapeutic window...

You say your therapeutic window was already by 3 times a day 125 Sinemet ER ???

Why they give you not more or add an

Dopamine-Agonist ??

Trixiedee profile image
Trixiedee in reply toJANVAN

It’s not me, it’s a friend. I’m going to see if he’ll treat me. What do you mean you aren’t on a therapeutic window? I can’t take more Sinemet as I get terrible dyskinesia. I refuse to take agonists because of the side effects.

JANVAN profile image
JANVAN in reply toTrixiedee

"aren't on a therapeutic window" >>> I can still take more Sinemet. The doctors say you can go to 800mg a day...............Anybody comment on this ???

Because they didn't consider the body weight , male or female, etc........

Trixiedee profile image
Trixiedee in reply toJANVAN

Don’t you get dyskinesia from Sinemet then? I do.

Ynot214ever profile image
Ynot214ever

Hi All

I had this procedure done by Dr. Jeanmonod and Dr. Galley

Ynot214ever profile image
Ynot214ever in reply toYnot214ever

Sorry, hit the wrong button. My left side is virtually free of tremor and only now my right thumb has tremor. I had the FUS procedure done at Sonimodul in Feb. 2017 I do have fatigue, some slurred speech and some imbalance, although no falls. I have no reaction to Sinemet. I wouldn't hesitate to have this procedure done if you feel it will help you. The three hours in the MRI tube for the procedure are assisted by anti-anxiety drugs LOL. I trust these Drs. completely.

Trixiedee profile image
Trixiedee in reply toYnot214ever

So good to find someone else who has had this procedure. Is the slurred speech and imbalance a side effect of the FUS? My friend had it on both sides at the same time and now has slurred speech. Do you know other people who have had FUS at Sonimodul?

JANVAN profile image
JANVAN in reply toTrixiedee

On his website there's a journal article of a woman who have had it (in German)

Trixiedee profile image
Trixiedee in reply toJANVAN

I want to find someone who doesn’t have a tremor who has had FUS as I have no tremor.

JANVAN profile image
JANVAN in reply toTrixiedee

I will try to find someone (but not everyone is "screaming of the roofs" that they have done FUS...........(( in Isreal they have also done some operations))

When does Ms. McCullough had the operation ??

Trixiedee profile image
Trixiedee in reply toJANVAN

She had it last week.

JANVAN profile image
JANVAN in reply toTrixiedee

Well, I would say wait and see.................tomorrow I'm going to a "Stammtisch" (Google Translation......) where I will met a lady who is operated and will go a second time..........

That "Stammtisch" is organised by a YOPD patient who has it already 10 years, very heavy tremor. And a bit sceptical about DBS.

I will keep you informed !!

P.S. : are you living in Amerika ?

Trixiedee profile image
Trixiedee in reply toJANVAN

No I’m in England.

Ynot214ever profile image
Ynot214ever in reply toTrixiedee

No, I had the FUS procedure done over two years ago. My imbalance and slurs are very minor and started recently. Most people don’t even notice them but I do. I feel these are PD progression related. I am still working, driving and exercising. I also do the emotional freedom technique and this helps.

Despe profile image
Despe in reply toYnot214ever

". . .fatigue, some slurred speech and some imbalance. . ."

Did you have these symptoms before the procedure? If not, will they go away after a certain amount of time? Thank you!

Wishes for the best.

Ynot214ever profile image
Ynot214ever in reply toDespe

Hi these symptoms are very mild and relatively new. I had the FUS on one side only over two years ago. No side effects resulted.

Despe profile image
Despe in reply toYnot214ever

Thank you. Hope you continue to improve on the road to recovery.

nv2013 profile image
nv2013 in reply toYnot214ever

Could you let me know how you are doing now. I believe your last post was 1 yr ago and we are considering this for my mom so all information is very helpful.

Trixiedee profile image
Trixiedee in reply tonv2013

I got turned down for the procedure as I’m a full time single parent and need to wait until my children are more independent. But other people in this group have had successful treatments.

Bobkat profile image
Bobkat

Hi my husband had DBS for his left side tremors could he still have this treatment?

NRyan profile image
NRyan in reply toBobkat

I asked this question to Lena (on the Facebook page PDFU) after her surgery. She said it is not an option for anyone with prior DBS as the brain has been altered by DBS surgery. The doc refuses to do ultrasound in case he hits the wrong spot on an altered brain. :(

Bobkat profile image
Bobkat in reply toNRyan

Thanks so much for this information.

Trixiedee profile image
Trixiedee

Pretty sure that DBS rules out any MRI scans

NRyan profile image
NRyan

I follow Lena on the Facebook page PDFU and I am so hopeful to hear her success. This is what I will do, given the choice. Saving my pennies now! Go for it Trixiedee!

ion_ion profile image
ion_ion

Still there are side effects.

Trixiedee profile image
Trixiedee in reply toion_ion

What side effects?

ion_ion profile image
ion_ion in reply toTrixiedee

Speech issues.

Trixiedee profile image
Trixiedee in reply toion_ion

I know a couple of people who had speech issues but only because they had it bilaterally.

ion_ion profile image
ion_ion in reply toTrixiedee

So, if it is done on both sides then that can disturb the speech? Is that happening for everyone who does it on both sides or only for some people? I should understand if it done only to one side there is no issue with the speech? I'm considering myself to try it but I want to make sure everything would be ok.

Thank you!

MarionP profile image
MarionP

Very very interesting!

MissRita profile image
MissRita

So how does a treat the dopamine levels?

Trixiedee profile image
Trixiedee in reply toMissRita

It doesn’t. It destroys a neurological pathway that is malfunctioning.

lenamm profile image
lenamm

I just want to add a note for anyone searching this. I am now 15 months out from surgery - my left side continued to improve for about three months post surgery and now has been extremely stable for a year. On my left side my two worse symptoms dystonia and dyskinesis are 100% gone, tremor is 95% gone, rigidity and bradykinesia 80-90% gone and fine motor back at about 80% of normal. I do have increase in rigidity, tremor and dyskinesia on my untreated right side but my right side is still better than pre-surgery. I still take a low dose of Sinemet ER but it only works for my right untreated side. My treated side is the same on or off meds. I plan to go back for side two when COVID let's me. I live in the US and Switzerland had blocked us from entering (with good reason). I'm still working, walking, driving , etc

Fighttolivenow profile image
Fighttolivenow in reply tolenamm

Thanks for the update. Hope you get the other side done soon and it be as successful as the previous op.

lenamm profile image
lenamm in reply toFighttolivenow

Thank you!

ion_ion profile image
ion_ion in reply tolenamm

Hi Lena! I just had an appointment with a neuro today; he is an old doctor but very open and he is listening to his patients; we spent around an hour. I asked about FUS and DBS; he called FUS brain ablation and he was involved in such a thing; he told me to postpone it as much as possible as it usually lasts 3-5 years; as DBS he said it lasts longer but doctors are pushing for it because it is a well paid surgery. Did doctor J gave you any ideas about the longevity of the surgery good results?

lenamm profile image
lenamm in reply toion_ion

He's been doing it nine years and says it has held in his patients for that whole time.

ion_ion profile image
ion_ion in reply tolenamm

Thanks Lena. That sounds good. Unfortunately there is no one here to confirm his saying but let's hope that's true. I already started to save money.

lenamm profile image
lenamm in reply toion_ion

Longest FUS surgery person I know is six years out - still happy

ion_ion profile image
ion_ion in reply tolenamm

Has he/she done it in Switzerland?

lenamm profile image
lenamm in reply toion_ion

He had it done in US - pallidotomy.

Despe profile image
Despe in reply toion_ion

Pardon my interference, but your doctor and most doctors in the US are more familiar with DBS than MRI guided FUS, with DBS being an older procedure, very invasive surgery.

Grasss1973 profile image
Grasss1973

It is wonderful that this procedure has helped in such a profound way. The word dyskinesia has been used frequently in many posts and I’m still wondering if anyone could describe exactly what is happening to them physically. The neurologists use the term “unwanted movement “ of the extremities but that’s kind of vague. My guess is that it’s probably different in each individual but I still have never read anyone’s description of exactly what they’re experiencing. Any enlightenment would be greatly appreciated.Thank you and may your good results last forever. Your post is a great motivator for anyone contemplating surgical intervention.

Trixiedee profile image
Trixiedee in reply toGrasss1973

This video shows someone with dyskinesia

youtu.be/-FqdiSoVhnw

laglag profile image
laglag in reply toGrasss1973

Watch MJ Fox. I describe it as a withering of your whole body. Tremor is more of a shaking. Dyskinesia is pretty much constant, a little more at times when I'm stressed. Tremor USUALLY calms down more than dyskinesia after you take your meds.

Trixiedee profile image
Trixiedee in reply tolaglag

Dyskinesia is caused by meds, unlike tremor. It’s a wriggling, twisting involuntary movement. And yes, stress makes it worse.

Would they consider performing FUS on someone like me in stage 2? I have incessant tremors in both hands and gait issues and bradykinesia. Perhaps FUS can stop PD progression dead in its tracks. Why do pwp have to wait until the bitter end?

Trixiedee profile image
Trixiedee in reply to

You don’t have to wait till the bitter end. If medication isn’t helping you you’ll possibly be eligible.

in reply toTrixiedee

Does it always affect speech?

Trixiedee profile image
Trixiedee in reply to

No, my speech isn’t affected.

Trixiedee profile image
Trixiedee in reply to

Although some gait issues aren’t helped by FUS. Mine were caused by dystonia so they have gone.

Maybe FUS is the closest thing to a cure?!?!

Does the procedure hurt or cause any discomfort?

Trixiedee profile image
Trixiedee in reply to

I didn’t enjoy it but mainly because I had terrible dyskinesia at the time. It’s not much fun but doesn’t hurt. I really enjoyed the Ultrasound zaps though. Felt like I was floating.

lenamm profile image
lenamm in reply to

The numbing shots for the halo hurt a lot but it is quick. I agree the zaps felt like being in zero gravity (enjoyable) and my dyskinetic tremor stopped immediately - up until then it hurt to be still when my leg was going crazy.

in reply tolenamm

Where do the inject you? The head? Nothing but skin and skull bone. Very little muscle.

lenamm profile image
lenamm in reply to

Yes four screws in the head to attach the halo

Trixiedee profile image
Trixiedee in reply tolenamm

I didn’t mind the numbing injections but the screwing of the halo wasn’t pleasant. Same thing is done for DBS but no skull drilling to follow.

Esperanto profile image
Esperanto

🕵️‍♂️Watch out. This is a sad case of scam and now reported!

healthunlocked.com/cure-par...

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