Just did my FUS surgery at sonimodul in S... - Cure Parkinson's

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Just did my FUS surgery at sonimodul in Switzerland and it's awesome.

Markbit profile image
103 Replies

My main simptoms on my treated side just vanish away... Like magic! 13 years of disesease simptoms, just gone!No more tremor, rigidity, dyskenesias, distonia, braquidnesia, all gone puff... some minor tremor on my untreated side in arm and leg and i tend to bend to my treated side (side efect, probably due to sudden muscle relaxation on this side), but the doctors told me the brain now needs about 3 months to compensate all the changes. Already doing about a 30% reduction on my meds, and can't wait to show the results to my neuro (he was very sceptic about the intervenction), so glad i did it :)

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Markbit
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103 Replies
laglag profile image
laglag

Good for you! Enjoy it!

Gioc profile image
Gioc

I am very happy for you!!!

Skydome profile image
Skydome

Congratulations! Heartening news! How well were your meds working for you prior to the PTT? Did you have your evaluation and PTT done all on one trip?

Markbit profile image
Markbit in reply toSkydome

My meds were not working very well. I was taking 4 sinemet 25/100 and 2 mucuna capsules, 3 amantadine and 1 safinamide, and was causing dyscnenesia by the end of the day. Not res ponding to meds is an requirement for the team to operate. I had my first appointement in October and they really need to do that assessment befpre the surgery.

Farooqji profile image
Farooqji

Good to hear that

jimcaster profile image
jimcaster

Congratulations! We now have you, Trixiedee, MB Anderson, and lenamm as courageous and successful role models! I am very happy for you Mark!

Markbit profile image
Markbit in reply tojimcaster

Thank you Jim! i'm amazed too, but i was very calm along the whole process! i think it helps a lot but the team is excelent and they sure know what they are doing. Marco

MBAnderson profile image
MBAnderson

Markbit, Congratulations. Wonderful, isn't it?

Every single person is completely bowled over by the success.

Clearly, the most valuable thing we can all do is figure out/create a plan and an ongoing, never-ending lobbying effort on how to bring PTT to other countries and get it paid for by insurance.

There are others (HU doesn't hear about) with equally amazing outcomes on Lena's Facebook page.

We have Rebecca (a.k.a. Trixiedee) and Lena (a.k.a. Lena) to thank for this.

Gioc profile image
Gioc in reply toMBAnderson

And also thank to you MBA a.k.a. MBA :-)

Markbit profile image
Markbit in reply toMBAnderson

It is just amazing Marc. Like magic. Puff... and it's all gone. 13 years just vanish from my left side. And the team told me they had everything on target so i should expect a very good outcome. I already do. Yeah, insurance coverage would be excellent as they have here in Switzerland and spreading the word to another teams would be awesome to be done in other countries. I think MJFF should also take aknolege of this results

Rupa88 profile image
Rupa88 in reply toMarkbit

MJFF

Are you kidding me

They never do anything useful except filling up their pockets

Kwinholt profile image
Kwinholt

Congratulations. We have to get that procedure approved in the states. I am so happy for you. Karen

Despe profile image
Despe

Congratulations! I am so happy for you and the "new you." :)

Markbit profile image
Markbit in reply toDespe

a really new me! Feeling ten years younger 😀

ParlePark profile image
ParlePark

Congratulations!!!

marcet profile image
marcet

Good news congratulations

Blueclouds07 profile image
Blueclouds07

Congratulations Markbit that is wonderful. Can I ask you please can you give me the information of the center and the doctor name and address please. Thank you

Markbit profile image
Markbit in reply toBlueclouds07

Prof. Jeanmonod e Dr. Marc Gallay at Sonimodul Center sonimodul.ch

chartist profile image
chartist

Markbit,

I am very glad to hear of your exceptional results and very improved quality of life! Congratulations!

Art

Markbit profile image
Markbit in reply tochartist

Thanks Art. And thank you for all your contributions that you gave me and all of us on this site. So gratefull.

alaynedellow profile image
alaynedellow

Congrtulations. Very gd news.

Zella23 profile image
Zella23

Such good news, I m so pleased for you. Sounds truly amazing to get your life back. It would be wonderful if other countries could offer this procedure and it becomes more widespread.

Markbit profile image
Markbit in reply toZella23

It's our job to do so.

Zella23 profile image
Zella23

Definitely!

LaChristine profile image
LaChristine

Hi some of the surgery cost was out of pocket do you mind sharing approximately how much it is?

Markbit profile image
Markbit in reply toLaChristine

Hi.. It cost's about 35.000 CHF, I think acording to Lena about 40.000 USD, and includes evrything except for flights and acommodation (except for the night in the private hospital after the intervention, it is included) All the 4 MRI the EEG, all the assessements,and the TAC screening are included in price. It is ensurance covered for swiss residents and it is covered by switzerland public health system

delboy381 profile image
delboy381 in reply toMarkbit

Can an assessment be done first I mean MRI, EEG and how much would it cost separately do you know?

ion_ion profile image
ion_ion in reply todelboy381

If a pre-check is done it costs 2000 CF and is subtracted from final cost of 35k. I was scheduled for a pre-check but I had to cancel it because of the travel restrictions.

delboy381 profile image
delboy381 in reply toion_ion

Thank you very much.

LaChristine profile image
LaChristine in reply toMarkbit

Thank you for sharing the information I had no idea either way. I’m hoping we will be approved soon for one of Scripps I know the neurologist has put in for it but I’m not sure if it’s gonna be an insurance coverage or not cool thank you again and I wish you all the best with your future outcome of the surgery.

jeeves19 profile image
jeeves19

I’m not a dissenter by any means and am delighted for the people that have had this surgery (& hope to have it myself, if I could afford it). But it seem just to be too good to be true. Why are the professional neurological world so sceptical and resistant to what’s going on in Switzerland? Surely they must have their reasons

jrg54321 profile image
jrg54321 in reply tojeeves19

Is it because many md specialists see (what they think to be) an equivalent procedure in dbs that has a lot of research behind it?

Canddy profile image
Canddy in reply tojrg54321

Yes jrg54321 - I just spoke to my neurologist on Friday about the FUS procedures and he too mentioned DBS...but he also said that he believes the FUS PTT procedure will be available in the US in about two years (just based on his discussions with other neuros not any regulatory authority)

Despe profile image
Despe in reply tojrg54321

And I higher profit, if I may add.

Markbit profile image
Markbit in reply tojeeves19

Hi. I think there are several reasons, mostly medicall publications are resistant because they say it is imppossible to have this results with surgery for PD, also there is a DBS industry installed, not to mention big farma that will have big business losses. I already reduce my meds by 1/3 and slowly going to 2/3. It is a new tecnic they are still improving, they said my intervention was one of the fastest and cleanest they ever did, the learning curve is high, so it is just not the tecnic, but also the team experience, and training teams like this is hard

Markbit profile image
Markbit in reply toMarkbit

They have a fundation to help people with finantial problems, especiallly youg people. Please contact the clinic. They are very human

jeeves19 profile image
jeeves19 in reply toMarkbit

Thanks Mark

Grumpy77 profile image
Grumpy77 in reply toMarkbit

Hi Markbit, a few questions... Did the neuros at sonimodul tell you how long the symptoms relief would last or if it is permanent relief. Also does PTT stop PD progression?

And would you be able to reduce your meds to zero eventually, if so roughly over what time span?

Many thanks

Markbit profile image
Markbit in reply toGrumpy77

Acording with the info the doctors gave me, they have followed patients up to five years, with no symptoms return, so they told me they had no reason to believe that would'nt last for life. They never mentioned that would stop progression, but told me that. As about meds, as a said before i have reduced already 1/3 and plan to reduce another 1/3 in the next2 weeks (doctors told me to go slowly). They released a paper now about bilateral PTT and 70% of patients who did it were able to stay out off meds

Grumpy77 profile image
Grumpy77 in reply toMarkbit

Thank you very much

LaChristine profile image
LaChristine in reply toMarkbit

Thanks Marc you’re a wealth of information I appreciate it. May I ask if you have a direct contact you were to call thank you again for everything

Markbit profile image
Markbit in reply toLaChristine

Send me a private message trough HU or by facebook (Marco Serrabulho) and i'll send you my whattsapp contact

Trixiedee profile image
Trixiedee in reply tojeeves19

Because the Sonimodul team haven’t done double blind trials. And because the DBS industry is too lucrative. With DBS they have a customer for life who will depend on new batteries every few years.

Trixiedee profile image
Trixiedee in reply tojeeves19

Also because they are ignorant. My neurologist only knew about UK FUS research. He’d never heard of PTT. I had to educate him and the last time I saw him he was truly excited for me to visit Sonimodul for treatment. Particularly as he said covid has created a massive backlog for DBS on the NHS.

ion_ion profile image
ion_ion in reply toTrixiedee

My neuro told me to use the money to buy a new car or something else and he recommended the DBS. I think he deserved a MF.

Grumpy77 profile image
Grumpy77 in reply toion_ion

What's MF?

ion_ion profile image
ion_ion in reply toGrumpy77

Lol! Middle Finger.

Grumpy77 profile image
Grumpy77 in reply toion_ion

Sorry I was so ignorant

Sapeye2020 profile image
Sapeye2020 in reply toGrumpy77

You are not alone on that one G77

Despe profile image
Despe in reply toion_ion

:) :) :) You made me laugh!

Markbit profile image
Markbit in reply toion_ion

Yeah! whats the use if you can't drive it? Money rules!

Markbit profile image
Markbit in reply toTrixiedee

Exactly

ion_ion profile image
ion_ion in reply tojeeves19

Their reason: the money!

BlueHawaii profile image
BlueHawaii in reply tojeeves19

They don't want to lose their bread and butter. Prescribing us pills!

LaChristine profile image
LaChristine in reply tojeeves19

May I suggest you keep an eye out on clinical trials.gov I’ve seen it once or twice and that would be covered completely

b-bobble profile image
b-bobble in reply tojeeves19

I asked my MDD about the procedure and she said that DBS was better because FUS is irreversible if the doctor misses the mark. Is there any worry about that outcome?

Markbit profile image
Markbit in reply tob-bobble

The discussion on DBS being reversible is long. What means reversible? Just disconnected or removed? It is true FUS is irreversible, but the team in Switzerland has now aquired a lot of experience, and they know exactly what they are doing (i don't know if others teams around the world know). DBS is still a bit of trial an error, they place the electrodes, turn them on and test the result on symptoms. But this is all a question of risk, and dealing with risk. My decision was based on trust, trust on the comments that other persons made, many of them here on HU, and trust on the team, after talking to them . And because i don't want to trust my ability of moving to an electronic device to the rest of my life. So, is a personal choice. My doctor also pushed me on DBS, glad i didn't went that way. I've been better right after surgery, latelly i had 2 hard days, but i think it was because of quick withdraw of l-dopa. I have leveled up a bit and feeling better now, but need 3 weeks up to 3 months to brain to reajust and heal. Tremor still comes in waves, exactly as doctors said it would come, but no dyscnesia at all, no dystonia in treated side (just that worth it) and some other gains not so notorious...

b-bobble profile image
b-bobble in reply toMarkbit

Thank you for sharing your personal experiences. Your testimonial means a lot. You're right, trust in the doctors, the success rate, and skill and experience of the practitioner make the difference. I would definitely have FUS over DBS outcome. I hope that will happen sooner than later in the US. But I'd feel better having it done in Switzerland.

lenamm profile image
lenamm in reply tob-bobble

Agree with Mark. The people I know that had DBS removed are in bad shape - stroke , infection. It is not easy to remove usually just turned off and left in. Why would I want my two perfect lesions to be reversible from PTT? I don't. I have yet to find anyone who does.

pdpatient profile image
pdpatient in reply tojeeves19

@jeeves19, take a look at my post

healthunlocked.com/parkinso...

Kia17 profile image
Kia17

Many congratulations.

Parkie- profile image
Parkie-

Extremely happy for you. You must feel so much relief. I have been worrying about the needle shot you receive before they screw the rack into your skull... Is it one shot or four shots (1 for each screw?) And was it very painful? Thank you.

Markbit profile image
Markbit in reply toParkie-

Well it is the most painfull part, but its is ok, unless you have needles panic, it is perfect bearable, The skull compression it hurts a bit but it only lasts for a few minutes, until the brain ajusts, just like the doctors said. Then, during the sonications first i felt a bit of heat, then a little pain like a tooth pain that goes up to the brain end then just like floating, first time was scary, think i was going to faith, but on the next ones just enjoyed the carroussell ride, after you learn that nothing is going wrong with you. After the 4 sonication, felt my arm completely free, just wanted to laugh :)

Trixiedee profile image
Trixiedee in reply toMarkbit

I hated having the halo fitted but enjoyed the sonications. I didn’t feel heat, just warmth, and felt like I was floating every time they zapped me.

lenamm profile image
lenamm in reply toMarkbit

I had no pain with the sonifications but the first time didn't feel the floating part. This time for side two each one felt like being in zero gravity. It felt a bit like being reborn:-) Very enjoyable as with each one my symptoms improved!

Despe profile image
Despe in reply toMarkbit

Do they give any tranquilizers to calm the patient down before they inject the scalp?

I know ablation works! Husband had cardiac ablation for tachycardia which no meds could control. After 10 years, he is absolutely fine!

Markbit profile image
Markbit in reply toDespe

They gave me a 24 hour effect muscle relaxer the night before. It was everything very smooth

Despe profile image
Despe in reply toMarkbit

Yes, that had a calming effect.

Trixiedee profile image
Trixiedee in reply toParkie-

The halo is more unpleasant than painful. 4 local anaesthetics but the screwing bit was more unpleasant than the shots for me.

lenamm profile image
lenamm in reply toParkie-

Well worth it for the relief that is felt an hour later and having your life back! Yes agree with everyone the most painful part!

Spencer53 profile image
Spencer53

What is FUS surgery?

ion_ion profile image
ion_ion in reply toSpencer53

Focused Ultra Sound surgery.

Theyakin profile image
Theyakin

Do the clinic advise waiting to have op or best to have it done right away. I am 49 had symptoms 4 years

Trixiedee profile image
Trixiedee in reply toTheyakin

They only operate on people who aren’t responding well to medication.

MarionP profile image
MarionP in reply toTrixiedee

Some day they'll make it elective rather than have hoops like "don't respond well to meds." Since the latter is really only properly subjective, thus should be left to patients alone to determine...it's their experience, after all. AS EXPERIENCED, which means no one but the patient can say, and that should be enough on its face to be accepted as dispositive, after all.

If anyone cares, there is also a formal name for the principle, it is "self determination: the dignity of risk." en.wikipedia.org/wiki/Digni...

Markbit profile image
Markbit in reply toMarionP

There are tecnical reasons to do so. They operate a path betwen the globus palidus and the thalamus and it has to be disrupted to be cut, otherwise will do more harm than good. that´s why (according to my knowlewge) they do not operate in early disease. The brain will then rebalance and find an alternative path to compensate. Marc, Lena, Trix, is this, right?

lenamm profile image
lenamm in reply toMarkbit

Yep by the time you have med resistant the PTT already holds no normal function, all has been rerouted and its safe to cut

Wonky-Bride profile image
Wonky-Bride

So wonderful to hear the excitement in your post and the relief that you have had such a great result. A truly joyful outcome Mark and I am so happy for you. I will very definitely be asking my neurologist here in London why DBS is the doggy in the window while FUS is hidden behind the curtains. Surely we can find supporters in the medical field to bring this treatment to the forefront?

Canddy profile image
Canddy

absolutely wonderful!

MarionP profile image
MarionP in reply toCanddy

yep

OREOLU profile image
OREOLU

Hi, congratulations! Does this work for all PD subtypes?

lenamm profile image
lenamm in reply toOREOLU

It works for rigidity, bradykinesia, tremor, dystonia and dyskinesia. It does not work for balance,freezing, cognition, and many non-motor signs. I've been told my unrecognized subtype dystonia dominant responds the best,

Lana666 profile image
Lana666 in reply tolenamm

Lena, if you don't mind of course, could you please give more info on " unrecognized subtype dystonia dominant"; what kind of dystonia do you have?

lenamm profile image
lenamm in reply toLana666

None now. However it was my worst symptom before prevented me from walking and was worse on meds

Lana666 profile image
Lana666 in reply tolenamm

Did it affect feet/legs only?

lenamm profile image
lenamm in reply toLana666

And my arms but that did not stop the walking

Lana666 profile image
Lana666 in reply tolenamm

thank you Lena

MarionP profile image
MarionP in reply toLana666

Good, Keep asking questions, the more the better. For everyone.

OREOLU profile image
OREOLU in reply tolenamm

Thanks lenamm.

Zardoz profile image
Zardoz

It's looking more and more like this is the last best hope for many of us. Stem cell treatment looks like a dead end. Any promising treatment would have to be a slam dunk sure thing right now in order for it to go through years of testing and be available in this lifetime.

Lana666 profile image
Lana666

Congratulations Markbit! Really happy for you! You are in a great company of Lena, MBAndersen, Trixiedee and others brave souls. Thank you guys for sharing your stories and your patient dedication to answer our questions. Hoping soooou much for the luck to be able to join your group one day.

Coling profile image
Coling

sorry what does FUS stand for?

jimcaster profile image
jimcaster in reply toColing

Focused Ultrasound. Pallidothalamic Tractotomy (PTT) is a form of focused ultrasound surgery. Google "SoniModul" or "Dr. Daniel Jeanmonod" and find their YouTube channel for more information.

ion_ion profile image
ion_ion

Mark, did you have the pre-check the same week before the surgery or few months in advance? If so, how many months?

Markbit profile image
Markbit in reply toion_ion

No, i did the pre check in October 7 2020 and the PTT in January 13 2021. But i live in Europe, closer to Switzerland

LaChristine profile image
LaChristine

Thanks Marc you’re a wealth of information I appreciate it. May I ask if you have a direct contact you were to call thank you again for everything

LaChristine profile image
LaChristine

Did everyone of you that’s had this surgery have it done in the same place? Was there any of you that dude one of the clinical trials?

LaChristine profile image
LaChristine

Did everyone of you that’s had this surgery have it done in the same place? Was there any of you that did one of the clinical trials?

Trixiedee profile image
Trixiedee in reply toLaChristine

Most of us in this forum went to Sonimodul in Switzerland, yes. Marc Anderson took part in a clinical trial before going to Switzerland but got the placebo.

Markbit profile image
Markbit in reply toTrixiedee

Lucky him :) it got placebo

Parkie- profile image
Parkie-

Hello Marco

I had the ptt surgery at Sonimodul on Feb 10 so just a few days ago. I have lost rigidity on left side and it's causing me to lean so much on the left that i developed muscle pain on my right side from my neck to my back. I also keep falling down when getting up from chair , leaning on the left where my muscles are so weak now... i believe you had something similar after ptt. If so, how is that now?

Many thanks

Trixiedee profile image
Trixiedee in reply toParkie-

Hi Parkie, My balance was bad for a couple of weeks after surgery. I fell spectacularly while carrying a bottle of wine and a wine glass and luckily managed not to get cut. I hadn’t even opened the wine so I wasn’t drunk! But my balance is fine now. Maybe you are really weak and need to practice some gentle yoga to strengthen. I think I’m really unfit as I don’t have the self discipline to exercise at home. Have you contacted the clinic to tell them how you’re doing? Are you taking the same amount of meds as before? I tried to cut down immediately after which wasn’t a good idea! I think Marco is doing well as I saw that he’s running on Facebook. Sending you love.

Parkie- profile image
Parkie- in reply toTrixiedee

Thank you so much Reb, that's very comforting. Yes, I saw Dr Gallay Friday and he did not seem concerned, but it has worsened alot since then. I have an appointment tomorrow morning with dr G to pick up a letter of recommandation for our return to Canada quarantine. I intend to discuss this at lenght with him. I am still taking 300mg day CL but the long duration form. I tried taking more this A M but got instant toe dystonia which i lost and was my best improvement from ptt, so, i can' loose that... Tks

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