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)
FUS question
Finally meet my MDS after my FUS surgery
PTT - Pallidothalamic Tractotomy
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.
Thank You! im so sorry you went through this...hang tough...
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!