My disastrous MRI guided FUS PTT - Cure Parkinson's

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My disastrous MRI guided FUS PTT

Parkie- profile image

I had the surgery at Sonimodul in Switzerland in Feb 2021.

Short story:

Before PTT, I took 3 x Levodopa Carbidopa CR daily. Now, I take 5 and my symptoms are a lot worse. Progression rate has increased.

Long story:

I never had resting tremors. I have rigidity, dystonia, bradykinesia, akinesia, masked face, bad voice and speech. My symptoms were worse on the left side, so they operated my right brain.

The one improvement I had was transient: Left side foot levodopa induced dystonia disappeared immediately after surgery but reappeared after 8 days.

Right after surgery, I developed a major balance problem. Ten days after surgery, I had fallen 10 time, never had fallen prior. I still fall regularly, not as often, because I now ‘’furniture walk’’.

What I thought was rigidity that had disappeared with the surgery, was rather akinesia (a new inability to perform voluntary muscle movements). Right after surgery, the balance problem was thought to be due to newly disappeared rigidity, but it was not; I had an exercise program made to measure by a kinesiologist, I did the program rigorously for months, but it did not help at all. Immediately post op, I also became unable to get up on my own from a lying or sitting position. We had to install a booster seat on the toilet when we came home after the surgery. I could not bathe or shower by myself pre op, but post op, I could not even move enough lying in the bathtub for my husband to assist me: we had to buy a medic bench. I walk more slowly, and am shakier due to post op permanent foot dystonia (only had Levodopa induced foot dystonia prior to op). Climbing stairs also became more difficult.

As soon as I came home after surgery, I noticed a clear worsening of my right side: I dropped and broke dishes. Everything was/is more difficult than pre op.

When I reported all of that at my evaluation three months after surgery, Dr Jeanmonod, who had always been pleasant before, became hostile, saying the surgery was a success, and my emotional brain was responsible for the worsening. He clearly threatened not to follow up with me, saying ‘’unless you admit you are entirely responsible for this outcome, there is absolutely nothing I can do for you’’. That is when I understood how he prevents bad outcome to show up publically: he shames patients into silence, blaming them…

There ARE bad outcomes. There is this case where a patient developed restless leg syndrome right after surgery in 2019. When they told Dr J., he immediately responded it was due to his emotional brain, in an intensive expectation phase. Turned out it wasn’t emotional at all: they redid the surgery on the same side, entire amount paid for by the patient again.

And I find dishonest to advertise in huge, obvious treatment facts on Home Page ''low and transient side effects'', while not mentioning major adverse effects like restless legs syndrome, having to redo same side surgery up to 3 times, significant speech degradation or permanent general worsening like mine, when they know these facts very well…

A HealthUnlocked member private messaged me with this info: ‘’I talked to a lady whose husband after encouraging first procedure quickly regressed and underwent TWO additional surgeries on same side. Additional procedures require the same investment$. And the procedure is definitely not a cure. I talked to the caretaker of one gentleman who said his client got significant speech degradation. When we finished, the man with PD tried to speak and really struggled. The lady whose husband had PD and got 3 procedures had similar comment about his speech.’’

And I strongly suspect that Parkygal’s story (healthunlocked.com/cure-par... is the same as me: she is probably keeping quiet, being told it is all her fault… But that’s only my impression.

How inviting is it to come out in social media while being blamed by surgeon for bad surgery outcome?

Prior to surgery, I explained Dr J. I was seeing a psychologist because of what I had read on Sonimodul’s Web Site concerning emotions. I had printed the factors that could explain the negative phenomena after treatment, for the psychologist to help me prevent post op reaction. I made sure I left no stones unturned. When I saw the psychologist after surgery, he found that my symptoms were much worse than pre op, and no, he did not find anything emotional that would create such results… In fact, just like my husband and I, the psychologist did not believe the emotional excuse for the terrible surgery outcome.

Since nothing in Sonimoldul’s text bothered me, Dr J then strongly insisted that I had a bad outcome because I had received an MSA diagnosis a few months pre op. He said the results were caused by a big, terrible fear that I had MSA. I told him that the MSA diagnosis was made over a 45 min appointment in an office, based on no concrete tests and that I had figured that spending 10 hours at Sonimodul, in a separate trip, months before surgery, doing MRI, Scan, EEG, neuro exam off and on levodopa was way more convincing to me. I had told my husband back then: they can call it what they want, I am going with the one who says he can help. So there went Dr J’s theory of my terrible fear…

But still, just in case Dr J. might be right... After all, I had read such good results in his studies and all the good testimonies here. He was insisting I place my trust in him and that I needed to find another therapist, a woman psychotherapist instead of a man psychologist I was seeing.

So I did: found a women psychotherapist instead of a male psychologist and I decided to go all in. I printed Dr J’s texts again, and even added:

These will be important themes for an adapted psychotherapeutic support, as well as reduction of fear, anger, the processing of traumatic events, the integration of the new situation and the modulation of future goals.

Just in case I had not processed some ‘’childhood traumatic events’’… We dug deep, finding what my husband calls ‘’little girls conflicts’’ with my sister, working through every conflict we ever had. Worked very hard, several hours daily, for months, reading new therapist book recommendations, doing psycho exercises, plus speech and kinesiologist physical exercises. Giving it all I could for months, with absolutely no benefit.

(See continuation in comments section due to too many characters for post)

49 Replies

When we got to Switzerland last month for my one year evaluation (rather 16 months due to Covid), they observed the damage, admitted I was way worse than pre op, but insisted that the surgery was a success… said they hit the target, showed me an image of a spot on an MRI image. Dr J. told me my EEG is exactly the same as pre op and that means it’s emotional…. To me, if the EEG showed I was in thalamo-cortical dysrhythmia before AND after surgery, it shows his surgery didn’t do s….t.

What changed everything was his next explanation… He went on to say that once I got the MSA diagnosis (yes, ‘’that’’ again…), I got this feeling of being doomed that is preventing me the benefits of his successful surgery… he said there once was a shaman who pointed a bone at a tribe member, telling him he would die within the next few days and that the belief was so strong (meaning to imply just like me with MSA…) that even a bunch of doctors with all their hi-tech equipment could not prevent the member from dying…

That was it for us. The doctor I kept defending pre op is actually either nuts or finds a very easy solution to explain his unsuccessful surgeries.

And another thing that made me lose the little trust I still had in him… A while back, once I had accepted to change therapists, Dr J. mentioned in an email that he would support me in my future neurological and psychological evolution. After his whoohoo shaman bullcrap, I reminded him of his email offer to support me, thinking he had at least some suggestions for me to get better, but he answered ‘’don’t look at me to find out what you are afraid of, this is your problem, you work it out’’… I am on my own!

What I think happened:

Either they messed up big time playing in my brain, damaging me.

or

They don’t master the selection part of the process. Their PTT works for most patients, but not all, and they cannot differentiate who will come out good from who will come out worse. However, they don’t mention this to the guiney pigs prior to surgery.

Would I have the surgery if I would have known the outcome: ABSOLUTELY NOT.

Do I recommend having this surgery at Sonimodul: ABSOLUTELY NOT.

beehive23 profile image
beehive23 in reply to Parkie-

Thank You! im so sorry you went through this...hang tough...

Goldencbc profile image
Goldencbc in reply to Parkie-

Thank you for sharing your journey. I am so sorry that you are now dealing with worsening PD issues. Based on your story, I would never trust that doctor. His responses were shameful. However, what shines in your story is your tenacity and commitment to be accountable to yourself and do everything in your power to get the best result. I feel hopeful that you will apply that same drive to recovery of lost function and healing. I wish the best for you. You can do this!

Thank you so much for sharing this side of the story Parkie-. I am so sorry you are going through this. Maybe you could join one of Marc's weekend Zoom calls. Your insight would be valuable (although you have shared it here, so you have definitely done your part!) us02web.zoom.us/j/833522248...

Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

Parkie- profile image
Parkie- in reply to Bolt_Upright

No cannot do... Due to speech and voice degradation, I am nearly locked in silence by now...

Bolt_Upright profile image
Bolt_Upright in reply to Parkie-

I am so sorry. I am praying for your recovery. It is good that you can still share on HU. Again, thank you for sharing. Your story is important. Dave.

Is the Sunday zoom for those who are not able to take part in the Saturday zoom or do people attend both which means they are completely different

MBAnderson profile image
MBAnderson in reply to Grumpy77

The Saturday Zoom was set up so people in Australia could participate - of which there are 3. They are mostly different, altho a few people attend both. The Saturday meeting usually has 10 -12 and the Sunday meeting usually has 17 - 22.

Parkie, I am so very sorry for you.

Thank you for your candid and detailed feedback. It is invaluable.

It takes a lot of courage to come forward as you have.

I agree Dr. J's response is inexplicable and adds to your pain.

Marc

Very brave of you to share this.

The pieces of the puzzle are starting to fall into place for me. If yours was considered a "successful" surgery, then the supposed very high "success" rates suddenly start making more sense. I am left wondering what a "failure" would look like.

Thanks again.

MBAnderson profile image
MBAnderson in reply to kevowpd

Her report certainly should give us pause.

Gioc profile image
Gioc in reply to kevowpd

Especially if behind the words "success" and "failure" there are sick men and women with their sufferings and hopes with whom it is better not to play with the words to "be right".

So sorry this happened to you. Thank you for sharing it with us.

I was wondering how you are doing. I’m very sorry this was your outcome. Thank you for taking the time to share your experience.

Thank you very much Parkie....pffff, that make my decision not easier.

I also hope for your recovery !!!!

Maybe this can help :

(with Psycho, with Detox (perhaps Christopher Shade (?)),(Dr. Joachim Mutter, German), with functional neurology (some Chiroprakters are doing that)

Grazie per la coraggiosa condivisione, squarcia il velo di imposta omertà.Mi spiace per quanto stai vivendo dal punto di vista fisico e subendo dal punto di psicologico. Un abbraccio

Thanks for sharing with us. So very much appreciated.

You really are very brave and I am so sorry that you have to endure this. I also thank you for sharing. Just wish I had at least some words to help. Thinking of you x.

What a horror. So very sorry to hear about your experience and especially the apparently unprofessional, actually shamefully shamanistic self-rationalizing response that you described. So very sorry.

Now the rest of my comment is not for you Parkie, let me request that you are better served by just skipping over to the last paragraph, and let it go there. Last paragraph. You won't gain anything I promise by reading further and you won't lose anything either. Just please skip over to that last paragraph about Dr Erickson.

Unfortunately, it is sometimes possible that some professionals are not immune from progressive egotism, grandiosity and narcissism, or as sometimes we like to say in Texas, chickenshit...the after the fact switch to a convenient new self serving, newly-and surprisingly changed from the scientific-pitched sales pitches up to then, unscientific surprise after-the-fact selfserving retroactive "diagnosis" that says, as unbelievable as it sounds, that it's all your fault, specifically the "imaginary" part of your own auto-suggestion...as if somehow we were back in the early 1900 pseudo-scientific make-it-up-as-you-go nonsense of Freud and early colleagues, whose real problem to solve and quest to pursue, was to be accepted among physicians as part of the community of "real doctors"... Because at the time and for a quite a few years after, they weren't and it bugged them mightily. (Before, when casting about for a new career focus, Freud hit upon psychiatry, he first was responsible for killing his best friend when he concluded that cocaine was a miracle cure for virtually everything, in fact he regularly took it himself.. he got his ailing friend so hooked and deeply addicted that he ended up virtually or perhaps truthfully and factually, killing his friend. This was the great man who afterward captivated three to five successive generations of psychiatrists. In your case, If the surgery worked, then of course it was the science and trustworthy scientific discipline of the physical intervention and the highly disciplined doctor, of course there would be times when it could go very bad regardless of all best efforts. But if it didn't go well, then somehow, retroactively, it must be psychological, and the result of a personal fault, namely "your" "fault." A really unfortunate part can sometimes come when people in desperation, any of us, can be vulnerable to fall into God worship in the process, which, if you've ever been on the receiving end of it, or spent your life encouraging being on the receiving end of it, hard to resist once bestowed... So very dangerous to the scientific requirement that the doctor includes intensively examining himself as rigorously as everything else in the search for error, before committing the elective surgery knife, or else he has without fair warning to his sacred charge suddenly affirmatively shifted himself back with the witch doctors and his patient ought to know it first. Sure it's incredibly risky engaging any of this, this kind of surgery, so of course one has to really understand how very risky it is in the best circumstance.

Up to now it's certainly seemed to me that this procedure and these people particularly were right for nearly all of us, some of the best hope around. I certainly hope you were not subjected to dishonest selection or distorted interpretive bias and promoting, if so, to the point of faulty screening, or faulty diagnosis, the practice of somebody who thinks he's getting out of this life as and with something better than the rest of us.

If you have the time and inclination, I urge you to explore, by reading, the story and biography of Dr Milton Erickson. I've found along my evolution of disabilities a lot of great succor and sustenance from his story.

Bolt_Upright profile image
Bolt_Upright in reply to MarionP

Thanks Marion. Interesting: Milton H. Erickson en.wikipedia.org/wiki/Milto...

I felt so sorry to fear about your experience and how absolutely let down you feel. It seems really strange and unprofessional for Dr J to blame the emotional side of your recovery on the lack of success. My husband has PD and I think all our thoughts have been looking towards this treatment in the future( well I have he’s not so keen).

One of the best helps my husband ever had was holistic and exercises and much more at European Parkinson in Italy. Nothing invasive only exercise, personal physios and advice and help! Their principal has PD. It’s probably too far for you to go and you may have something similar near to you.

My thoughts are with you. I hope you can find a way through this.

the entire medical system is just a money grabbing scam...big pharma's pills and dangerous surgeries...you're better off staying clear of the allopathic system...focus on eating a healthy diet... no sugar or alcohol...all organic veggies and grass fed meat...exercise if able...getting out in nature and the sun...research vitamins like 5htp...b-1..hydrogen water...NADH...I dont take ANY pharma pills and have improved significantly in the past 12 months...if its a placebo effect I dont care...I feel better and thats all that counts...good luck

kevowpd profile image
kevowpd in reply to Solvang53

Have a bit of class dude. Basically every comment youve made on this site has been some derivative of 'big pharma' ranting and whilst it usually goes ignored, it ought to have been obvious that this thread wasnt the place for it.

Solvang53 profile image
Solvang53 in reply to kevowpd

have a bit of class dude? yes saying dude is very classy...I have as much right to state my opinions as you do and if you dont like them dont read them...now go get your COVIDIOT booster shot...big pharma is counting on you

So how are you doing Solvang53? Are you taking Mucana?

I need to start using my hydrogen water machine (if only to justify the $190 I paid for it).

I would love to hear about your improvements.

I am doing much better than twelve months ago...its a trial and error approach using combinations of vitamins...C..B1...ashwagandha...NAC...coQ10... hydrogen water...I use Mercola hydrogen pills...liposomal curcumin...NADH...strophanthus...from Dr. Cowans site...fasting 24 hours once a week...3 days 4 times a year...near infra red light therapy...mostly keto diet...NO SUGARS OR ALCOHOL...daily exercises outdoors in the sun...I live in an area with great sun exposure...drink purified structured water...and finally you really need to manage stress as much as possible...that may be the most important thing to do...so far so good...oh and avoid ALL vaccines they are toxic time bombs...good luck on your journey

I had shared the bad outcome of a WhatsApp group member on HU forum and consequently I was kicked out of the group for awaring people of that incident. It's really commendable that you came up with your experience and informed people that FUS is not always a fairy tale and the things may turn the other way around. There are some people who advertise it as a miracle which is not true.

Parkie- profile image
Parkie- in reply to Farooqji

I'm sorry you got kicked out. I wanted to wait until I was sbsolutely sure I did everything I could to try and get better, before publically speaking. I didnt read forums nor read any pd info on web for a full year post op.

Farooqji profile image
Farooqji in reply to Parkie-

You have rightly done so. My prayers are with youJust one question: Have you consulted other neurologist for second opinion on MSA diagnosis

Parkie- profile image
Parkie- in reply to Farooqji

Yes, I have. I was told that the only way to know for sure is an autopsy... There are no definitive test to diagnose MSA.

Skydome profile image
Skydome in reply to Parkie-

Hi Parkie, obviously Sonimodul rejected the MSA diagnosis? Otherwise they would not have gone ahead with the PTT for you, right?

I got the feeling that non-tremoring type like you and I tend to show less benefit from FUS and DBS. Trixiedee is another one without tremors and I wonder how she is doing now.

I’m surprised and disappointed by Dr. J’s attitude towards you post-op. To blame the poor outcome on the patient’s emotional state is not only unfair, but also an absurd excuse to dodge responsibility.

Parkie- profile image
Parkie- in reply to Skydome

Yes Skydome, Sonimodul diagnosed idiopathique PD. Dr J mentioned last month that if he would have thought I had MSA, he would not have operated. I found that to be a very special choice of words... Almost as if, after seeing the results in person for himself last month, he was admitting it could could be MSA afterall... But thats just my impression.

Skydome profile image
Skydome in reply to Parkie-

Thanks, Parkie.

How well did you respond to levodopa before PTT? You seemed to be on very low dose.

Parkie- profile image
Parkie- in reply to Skydome

I get terrible side effects and very low benefits, but when I try to stop or lower Levodopa, I can hardly move because of rigidity.

Hi Parkie, I too was wondering how are you going now, I'm very sorry for what you have suffered and I hope you can return to the condition you were in before the surgery.

At this point I am more afraid of the attitude of the doctors than the surgery itself.

I hope and pray that you recover soon, I am sure you will improve.

Gio

So sorry to hear about your devastating post op health but thanks for sharing- it’s so important

Thank you for sharing your experience, Parkie. I feel bad for you on many levels. It's bad enough to have had a bad outcome, but to be blamed for it makes things considerably worse. Your experience reminds us all that there is not yet a silver bullet.

I’m so sorry for the treatment you got and the results from the surgery. I do hope you can regain your pre-op status. Thanks for taking the time to post your story.

Thanks for the update. I had the impression there were less side effects . It goes to show. All surgery comes with a risk. At the end of the day one should try everything before FUS or DBS. But some day I will have to choose .

Sorry to hear that you are going through so much pain, I pray and hope you get much relief from your pains

There goes my last hope of getting out of this shaky nightmare....

Parkie- profile image
Parkie- in reply to Grumpy77

I am sorry about your last hope. I would be even more sorry if you got a similar outcome as mine because nobody had warned that bad outcomes do happen at Sonimodul...

kevowpd profile image
kevowpd in reply to Parkie-

What did they say about the risk of a negative outcome beforehand?

Parkie- profile image
Parkie- in reply to kevowpd

When asked preop, Dr. J repeated what is stated on his Web site:

''0 Bleedings

5 Effects on neighboring structures

16 Neurological worsenings

Effects on neighboring structures were partial and mostly transient.

Neurological worsenings were moderate and mostly transient''

As far as I am concerned, playing with words when stating that neurological worsenings were mostly transient...

Not a single word about Restless legs syndrome, having to redo same side surgery up to 3 times, significant speech degradation or permanent general worsening like mine, when they know these facts very well…

arty-fact profile image
arty-fact in reply to Parkie-

Your determination to keep trying and not report back until you had fully explored your negative outcome is not only thoughtful but inspiring. Thanks for sharing this with us. I will be thinking of you and really hope that your strength of will is your salvation x

Very Courageous Parkie to bring your pain and anguish so publicly to make others aware, not an easy thing to do. I have recently started taking PTT-FUS & DBS more seriously as options for my situation, so thank you and I hope you can at the very least get back to where you were prior to Sonimodul. Thoughts & prayers headed your way.

Eric

This is so sad... Praying that you be granted peace that surpasses all understanding, healing and strength. Thank you for sharing your experience. The fact that it didn't provide expected outcome and Dr. J's attitude toward you afterwards gives a lot for us to think about.

God bless you on your healing journey!

Thank you for sharing it!!

Parkie- profile image
Parkie- in reply to koshca

I just read your post re your DBS not working about 2 yrs ago. How is it now? Did you get any benefits?

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