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 
Just did my FUS surgery at sonimodul in S... - Cure Parkinson's
Just did my FUS surgery at sonimodul in Switzerland and it's awesome.
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Markbit
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Good for you! Enjoy it!
I am very happy for you!!!
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?
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.
Good to hear that
Congratulations! We now have you, Trixiedee, MB Anderson, and lenamm as courageous and successful role models! I am very happy for you Mark!
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.
And also thank to you MBA a.k.a. MBA
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
Congratulations. We have to get that procedure approved in the states. I am so happy for you. Karen
Congratulations! I am so happy for you and the "new you."
Congratulations!!!
Good news congratulations
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
Prof. Jeanmonod e Dr. Marc Gallay at Sonimodul Center sonimodul.ch
Markbit,
I am very glad to hear of your exceptional results and very improved quality of life! Congratulations!
Art
Congrtulations. Very gd news.
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.
Definitely!
Hi some of the surgery cost was out of pocket do you mind sharing approximately how much it is?
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
Can an assessment be done first I mean MRI, EEG and how much would it cost separately do you know?
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.
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
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?
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)
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
They have a fundation to help people with finantial problems, especiallly youg people. Please contact the clinic. They are very human
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
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
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
Send me a private message trough HU or by facebook (Marco Serrabulho) and i'll send you my whattsapp contact
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.
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.
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.
What's MF?
They don't want to lose their bread and butter. Prescribing us pills!
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
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?
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...
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.
Many congratulations.
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.
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
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.
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!
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!
The halo is more unpleasant than painful. 4 local anaesthetics but the screwing bit was more unpleasant than the shots for me.
Do the clinic advise waiting to have op or best to have it done right away. I am 49 had symptoms 4 years
They only operate on people who aren’t responding well to medication.
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...
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?
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?
Hi, congratulations! Does this work for all PD subtypes?
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,
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?
None now. However it was my worst symptom before prevented me from walking and was worse on meds
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.
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.
sorry what does FUS stand for?
Mark, did you have the pre-check the same week before the surgery or few months in advance? If so, how many months?
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
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?
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?
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.
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
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.
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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