UPDRS off-medication postoperative score revealed percentage reductions of the mean of 84% for tremor, 70% for rigidity and 73% for distal hypobradykinesia(was compared to the baseline on-medication score )
Long term abstract on PTT by FUS is out. Can not access full article yet.
frontiersin.org/articles/10...
This is the surgery I had, my results were about 90%,80%, 80%
I had to Google it: FUS, focused ultrasound. PTT, partial thalectomy.
Actually pallidothalamic tractotomy
Hi all.. I just posted what happened to my mother in august if you referral is for Focused Ultrasound .. So I post here as well, because everyone has the right to know what the Neurosurgeons forget to address, or they doing in purpose I have no clue, but here you go my post to you all.. Anyone who willing to go for a focused ultrasound should ask this questions what I just post... --- When my mom was ready to proceed with the focused ultrasound, two days before she found out from the doctor specialist who would do the focused ultrasound and the radiologist, when they put the paper to sign front of us that she can pick and chose which hand she want to improve the tremor, the left one or the right one... Because they can only do one hand explained to us at the Hospital. We where waiting for two years to do this... And here comes the biggest issue what they did not addressed to my 76 years old mother is before in all this waiting so this is ridiculous "after the finished focused ultrasound treatment she can lose 25-to 40% of her mobility and that could be forever! And everyone who going for it will take this chance." My mom mobility is all ready rusty with shaking hands , so we decided not to go for it.. Imagen what is worst, not to walk stable anymore or worst comes to worst maybe can't even get up anymore just because they fix 65% only one shaking hand. Just wanted to share this with you all.. We left without signing anything, and all this waiting and hopes done to the drain to this Super Focused Ultrasound what they begging about ! What a joke!
Merry Christmas and Happy New Year all of you...
Where did this happen?
Toronto Sunnybrook in august.
And I was there with my mom.. Very disappointing .. They should of tell us way before at the time of the exams. But they did not! Only the time we found out where they put the papers to sign. I didn't sign nothing.. No but no thanks..
Your frustration is understandable. If any PWP were told they might lose 25% to 40% of their mobility as they were just about to undergo a therapy, they would be entitled to be outraged. I certainly would be.
Since you posted your comment, I've been looking through the literature, but have not found any that supports such a warning of loss of mobility. I've also reviewed everything on the FUS section of Sunnybrook's website and there is no mention of such a side effect and I believe they would be ethically obligated to discuss it because of 40% loss of mobility is so dramatic, it would call into question the very viability of the procedure.
I am concerned there is a mistake or misunderstanding here. Nobody would risk going into the clinical trial to trade relief from a tremor for loss of mobility.
(I'm particularly surprised because Sunnybrook at Toronto was an early adapter of FUS.)
Could it be due to the particular circumstance or condition of your mother?
Is it possible there is a misinterpretation of their comments?
You had hopes that FUS would provide relief and waited a long time for it and as a 25% to 40% loss of mobility is not discussed anywhere I can find, if I were in your situation, I would go back and contact them and ask for clarification, i.e.,
1) why weren't we told this during our initial contact regarding FUS?
2) since the potential of a 40% loss of mobility is such a dramatic side effect, why isn't this mentioned on your website?
3) what is the basis of this warning? Direct me to the data.
There's something wrong here.
Marc
PS. I will contact Sunnybrook and ask them explicitly if there is such a warning in their consent form for FUS for PD.
There MBAnderson,
I did all that.. And more
And yes, there is such of warning in their consent form for FUS. But there is no misunderstanding at all. They was let us know in the last minute!
And no, there wasn't any particular circumstances with my mom, it was exactly as I wrote done the 100% truth story happened with us at the hospital.
Happy New Year
Ohh, and one more thing, "YES" they can only do one hand and one hand only for tremor, but as I specified above, no guarantee and no guarantee if your motor function will stay the same way as before because the loss of percentage if you willing to go for it and sign they form. Thanks.
Okay, I understand. You are certainly entitled to be angry.
Sunnybrook in Toronto does this? I thought this procedure was only done in Switzerland?
Not PTT (it is only done at Sonimodul in Switzerland) - they do one of the other two FUS surgeries - I believe thalmotomy. There are three different FUS surgeries for PD.
Oh wow, I thought there was just one kind. Anyone have info on the difference between all three? Thanks!
PTT in Switzerland is the only one that can be done on both sides and treats tremor, dystonia, dyskinesia, bradykinesis and rigidity and results hold for at least six years (ie halts progression of symptoms). Thalmotomy in the US and other countries is just for tremor and can only be done on one side. Pallidiotomy in the US is for dyskinesia but seems to treat different symptoms as well, also only one side can be done. The US procedures have not been done long enough to know the lasting effect.
Wow thanks for that breakdown, really helpful! Do you know if the treatment in Switzerland is only for Tremor dominant people or do they also treat rigidity dominant folks? I cant seem to find this info. I emailed the clinic in Switzerland, but obviously they are closed at the moment. Thank you so much!
I just had a friend go through it who had no tremor with great results. So works for both frontiersin.org/articles/10...
Amazing. How is your friend doing? Which treatment did they do?
She feels like she doesn't have PD anymore. Sonimodul is the only place that does PTT and where she went. We have a facebook group if you want to join facebook.com/groups/6095308...
Thanks Lena.
Looks to me like this will completely replace DBS in the next 5 to 10 years.
Lena, you are an early adapter. Early bird gets the worm.
I hope so!
Easy, easy, Marc >>> the results of Prof. Jeanmonod in Swiss are mixed. With mixed I mean : some very spectacular (there was a time ago a videolink here of patient who did the whole way from Amerika to Swiss) results and
some with very little, >>> a person who is with us in the self-aid group.
Prof. Jeanmonod does it already almost ten years, I think. 288 FUS Interventions.....
So if you want and can afford a second opinion, I would recommend him.........
I was already there in 2017 >>> "much too early for you" he said. One of the most
extensive (neurological) medical examination I ever had !!
He doesn't publish also much, of course chirurgians of the state hospitals don't like
him so much.......
DBS is done more, also more experience, but also with a lot of mixed results.
And........there is, of course already a DBS-Industry......
My dream : Detox-doctors and functional medicine guys who work together
with massage/yoga specialists and neurochirurgians.............
Ow sorry , Marc and other HU's : I have "to ease a bit" my comment.
I replied immediately and than I wrote the article..............
They have collected the data (and they have a lot more) and indeed
promising..........
By the way : my examination in 2017 was done by Dr. Gallay !
I am not sure I fully understand either of your comments. Would you please elaborate some? Thank you.
I am past the point of no return -- with nonrefundable plane tickets and housing, plus I am emotionally committed. There is no looking back now.
I'm very excited for you, Marc!
Thank you, Jim.
Good luck, please let us know how you do. Thoughts and prayers are with you
Hi Marc,
Are you going for assessment or operation, or both if the former proves the latter viable? Is it still the case that only patients who do not respond to PD meds are considered for this operation? I wish you the very best outcome!
Good luck with your fus surgery, will you have one or two sides done or will you find that out when you’re evaluated.
I went to Brigham and women’s yesterday re: fus and didn’t qualify for the treatment for shaking because when my meds work the shaking is controlled. The neurosurgeon was going to put me in the study for theone I did qualify for but that had closed so all he could offer was DBS. I’m not interested in that at this time so look forward to hearing how your visit in Switzerland turns out because I believe I will look into that also.
Camper, thank you for your well wishes. I don't believe they make a decision about doing both sides at the time of the evaluation. I think they want to wait a year or two and see how far that goes.
Did you go to a clinic offering a commercial procedure or a trial? I assume it was for a pallidotomy? Depending upon how badly you want to procedure, you might want to consider other locations. It may be that different doctors come to different conclusions and have different priorities for performing the procedure. You might offer to send other locations a video of you on and a video of you off meds.
I don't know, but will ask, why I was easily and quickly accepted. Perhaps, because Sinemet does little or nothing for me.
Marc
I went to Brigham and women’s in Boston. The neurosurgeon said he has been doing FUS for many years. The commercial treatment is what I went for since it was an approved treatment for tremor dominate parkinsons which is what I though I had because when the meds are wearing off I have a fast tremor. He offered me the trial with pallidotomy but the study has been closed.
My understanding is for FUS (at least in Switzerland) you have to have reached the point where your meds are no longer working. By the time I had my surgery my ons were worse than my offs because my meds caused painful and debilitating dyskinesia. It sounds like you still have a defined on. Of course I did not look into the other surgeries so there may be a center that would do it when you still have on periods - don't take my word for it.
My meds during on time is causing dyskinesia and I also have dystonia.
Ah - my MDS said I would not quality for the tremor dominant FUS because I wasn't "tremor dominant" because of the large amount of dystonia/dyskinesia I had which it wouldn't help . So sounds like you might be ok for the Swiss procedure.
Sure, Marc, sorry. But sometimes when I see news about PD and Therapy, I react to quickly......
So after my Diagnosis in Summer 2015, I searched the internet for hours and hours,
and I went to Davie, Florida for "special drops" >>> you can forget it
I went to Valencia, Spain for "everlasting needles" >>> also dubious, although that
neurologist will say, today I am in "such a good" condition, thanks of his exercises...
I went to Kottayam, India, for a detox cure and to plan my future >>> still use
their Mucuna-mix, also accommodated to my body type (basic constitution = dosha)
>>> still helps me a lot (in combination with classic L-Dopa)
>>> and then I went to Solothurn to Dr. Gallay for the examination.
Kept them continuously following, sent them some news about FUS in South-Korea,
England (London) , Germany (Bonn) in big institutes..........but SoniModul has done
it already for years.
Because (certainly in 2017) I responded well to L-Dopa and not taking much of it,
they said, it is not (yet) to consider for me.
And like I said they keep on going and have made now that interesting and promising trial, which I commented in my first reply to critical, to sternly.
So, go for it, Marc !!
(can you perhaps say to me when you will arrive and how is your
time schedule ? Thank you in advance !)
JANVAN & Skydome,
I leave the US Thursday, March 5 and arrive in Solothurn Friday evening, March 6. I show up early Monday morning March 9 for 2 days of pre-op evaluation and if I pass muster there, then the actual procedure will be Wednesday, March 11, then 2 days of post-op evaluation, then we leave for Zürich Saturday and fly back to the US Wednesday the 19th.
Skydome, it is probably the case that we interpret their criteria slightly differently than how they mean. I don't have dyskinesia, which I told them. I have not run to the end of carbidopa/levodopa therapy, in fact, I consider myself at the beginning having just started on minimal doses about a year ago and am now up to 400 mg mg per day and sometimes I skip several days, which I also explained to them. I did tell them I consider myself pretty unresponsive to Sinemet, feeling nothing 80%-90% of the time and I believe they made the decision to accept me pretty quickly, after reviewing my videos. That probably is also because I told them I was accepted for the pallidotomy clinical trial.
Bottom line, I would encourage anyone who is seriously entertaining the procedure to contact them because I think the criteria is flexible. I don't know this, but I suspect Dr. Jeanmonod bases much of his decision to do a pre-op evaluation on the videos.
Florida, Spain, India -- that's a serious search. Like you, I've poured over the SoniModul website, the FUS Foundation website, and Insightec's website and have read everything else I can find and have decided the risk/reward balance is within my threshold of risk which is, perhaps, higher than most considering I've been taking Nilotinib for 3 years (but quit last week.)
I believe the risk from FUS-PTT is considerably lower than the risk of being in a phase 1 trial for an experimental pharmaceutical. Actually, I consider the risks to be insignificant -- so if a person were to interpret the risk as I do, I think it's a no-brainer.
I hope this is helpful and I hope you're having a nice holiday.
Marc
Thank you, Marc! Fingers crossed for you.
Hello Janvan
I noticed this in a FUS paper:
"No ethical approval was sought because MRgFUS PTT is approved by the swiss health state department and covered by swiss social insurances."
ncbi.nlm.nih.gov/pmc/articl...
Is the FUS PTT procedure free of charge for Switzerland Citizens? (I guess not in his private clinic but maybe in Switzerland public hospitals?)
I was under the impression that this only addressed tremors. I had no idea that it was beneficial for rigidity and bradykinesia. Do I understand correctly that this offers potentially huge benefits for all of us? If so, this is the most encouraging post I have read.
The FDA approved US procedure just gets tremors. This is a different target. It felt like a miracle when I had the surgery - non-functional to 80% better the same day. I do have issues with my untreated side but hope to have surgery on side two next year.
I know you have shared information about this before, but for some reason, it is finally sinking in. This is easily the most important and encouraging news I have ever read regarding Parkinson's. THANK YOU!!!
Hi lenamm, This is so encouraging. Why is PTT only available in Switzerland and has not been adopted elsewhere? Is it to do with approval or the licensing of this particular procedure, or the unique expertise of Doctor Jeanmonod, etc.? Thanks!
The Japanese are clinical trialing this year. fusfoundation.org/news/japa...
Percentage calculations in most of these studies are often misleading and are provided for that reason.
From Gallay's (who led the cited case study) 2019 study paper:
"This study presents our current approach to the MRgFUS pallidothalamic lesioning which was developed because the two strategies of application repetitions and increase of application time failed to prevent symptom recurrences."
Something to think about unless you are willing to throw the dice and the money.
Sharon
I dont think that quote you gave says what you think it says
Bush:
I think what he is saying in this 2019 report is that the previous approach (s) didn't really work very well because they didn't really prevent symptom recurrences regardless of the media hype to the contrary (as extolled on this forum and others). Then, I "extrapolated" his comment to raise the question of whether or not the current approach over time will work any better. Perhaps it will; perhaps it won't.
I believe it is too early to tell if his new approach is successful longer term even though the proponents of MRgFUS pallidothalamic lesioning (or more specifically, their approach) believe it is the answer to significantly bringing relief to PD patients.
I hope it is, but if you have been involved with PD for more than a couple of years as I have with the 2 support groups I coordinate and manage, we have been down this road with DBS which was often promoted as the Holy Grail to solve all the problems associated with PD.
It wasn't.
Sharon
Oh ok. Your comment makes more sense to me now. Thank you for the expansion of your reply!
I agree with Sharon. Even in Italy it can be done, but it is still considered experimental.
“Probably surgeons follow different protocols: in Italy it provides for an initial phase in which nerve cells are only stunned so as to mimic the lesion appears and if any side effects therapy is stopped. This prevents the risk of adverse events. Unlike DBS, there is no risk of bleeding and infection, because the technique is not invasive”
I guess there are more intensities of application ...
Thank you very much , Sharon ! So useful this forum >>> has saved hours of
internetresearch for me !
Here is Prof Jeanmonod talking about the procedure. m.youtube.com/watch?v=QGQ1i...
My understanding is that FUS is approved for essential tremor as the professor talks about in the video as well. It’s a bit confusing about the different tremors. I’ve heard thar Parkinson’s tremor and essential tremor Are different, and have different causes, but the same targeting of a part of the thalamus, seems to help them both… My mom is diagnosed with essential tremor, and I’ve wondered about the link with PD.
There are three PD targets.PTT in Switzerland is the only one that can be done on both sides and treats tremor, dystonia, dyskinesia, bradykinesis and rigidity and results hold for at least six years (ie halts progression of symptoms). Thalmotomy in the US and other countries is just for tremor and can only be done on one side. Pallidiotomy is US is for dyskinesia but seems to treat different symptoms as well, also only one side can be done. The US procedures have not been done long enough to know the lasting effect. I spoke to one woman who had palidiotomy and symptoms came back in three months.
Et is thalamus target but smaller.
Thank you very lenamm !!
Again showing the value, significance of this forum !
I find it interesting that he does not treat MS (or by assumption ALS or ALZ) even though some research suggests all four disease modalities are somehow linked by neurological degradation.
Sharon
The tract he cuts is specific to PD - it over fires in us and leads to symptoms. Not true for the other diseases. Interestingly enough it doesn't work in Parkinson's plus disease either - it is very specific to PD.
Did he explain why he waits for the PD to progress to a specific point before considering treatment?
Two fold. One by the time you are med resistant there is no normal function in the tract anymore and no potential harm in cutting it. Two I believe he takes pity on us who have no med options left. And you have to remember it is still brain surgery so not something to take lightly if your meds are still working. Plus he has only been doing this 9 years, beyond that no one needs prognosis so far.
#1 How exactly does he define "med resistant" (e.g. amount of levodpa consumed in 24 hours without noticeable change; duration of on-off periods, etc?) or is it strictly observational? The variation IMO would seem to vary widely.
#2 Does he use a DaT/Spect scan or rely on the MRI or a combination machine?
#3 Any idea of the number of cases he and his team have done?
Sharon
I think that varies person to person. In my case I got dyskinesia so severe from even 300mg of Sinemet a day i couldn't work, walk, drive, etc.
I don't think at datscan is necessary but I did send him mine.
I think between 20-100
Hi Lena, do you know more about where in US this Pallidiotomy was done which didn’t last long? Stanford is one of the site for the international clinical trial for fus Palidiotomy. I contacted them. I wonder if the non lasting case you mentioned was from the same study there or at another site.
Where did you have this done?
sonimodul.ch/home/parkinson/ . They are the only place doing it
TY.
a short history of research and discovery on the FUS:
For english language push on flag .
parkinson.it/varie/ultrasuo...
This story once again demonstrates how research and discovery is based on fortuitous events, but observed and evaluated by ingenious people often mistreated. Anyway nothing to do with mice.
Hi Lena!
What about the sensitivity to stress? Did that improved, too?
My anxiety is much less - is that direct or the result of not having to worry about having myoclonic convulsive like tremors 6 hours a day? I don't know. Much easier to be around large groups of people.
Thank you. I was able to give speeches to large crowds (one time 10k people) but now I have trouble even when talking to a single person. This is my main issue now as the HDT solved all the others.
What are the costs?
35,000 CH (Swiss francs) per side plus travel expenses when I had it.
