I am looking for people who actually had this procedure done. The trial began Feb 2018, so I guess it's possible.
It's the same trial that HU member MBAnderson enrolled in (recently ended up getting the sham/placebo).
If anyone else had the actual procedure, could you please share info on what were your symptoms before and after the surgery, detailing benefits and adverse effects?
.........
Second question on same subject:
I read positive info on the Pallidotomy: Unilateral Lesioning of the Globus Pallidum (prior to surgeons using the new focused ultrasound technology). But I am still wondering if it is equally effective as Dr Jeanmonod’s Pallido-thalamic tractotomy (PTT)? Has anyone looked into this? Does anyone understand the result difference, symptom wise, between the two?
Thank you
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Parkie-
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To expand Parkie's question: if anybody here had Dr Jeanmonod’s Pallido-thalamic tractotomy (PTT) treatment or at least knows someone who had it and would be willing to share their experience this would be highly appreciated.
My husband has been trying to enrol on the trial at Imperial College London. He first tried a year ago but somehow the required forms which needed to be completed didn't ever get to Imperial. Something went astray between Glen's GP, his Parkinson's Nurse & the Neurologist. Consequently he is in the process of trying again. However, we too would like to know the difference between MRI-guided Focused Ultrasound Surgery (MRgFUS) and Dr Jeanmonod's Pallido-thalamic tractotomy........anyone?
FUS is just a tool to do a surgery. Both surgeries are done with it. Pallidotomy treats dyskinesia, PTT treats dystonia, dyskinesia, bradykinesia, rigidity and tremor. PTT can be done bilaterally, pallidotomy can not. PTT appears that it stops or slows progression. The results last six plus years with no decline. Probably will last forever. Pallidotomy 3-18 months maybe - we don't know. I had PTT 5 months ago - if you search FUS Switzerland Trixiedee did a whole post on my results. I will probably have side two treated next year which I am glad is an option.
and those are the symptoms it helped in me and what Dr. J said it would help. It also got rid of my anxiety.
Pallidotomy - the three months is from someone in one of the trials that contacted me to let me know she only got three months, the 18 months is from Marc's comments on another thread. Truthfully I don't think any data has been published yet
To treat parkinsonian patients, neurosurgical procedures have been performed already in the 1960s [7-9] in the subthalamus. Like for pallidotomy, it was shown then and more recently that—in addition to tremor—akinetic and rigid symptoms could also be relieved, whereas thalamotomies only obtained a selective tremor relief
First experience with MR-guided focused ultrasound in the treatment of Parkinson's disease
Anouk Magara, Robert Bühler, [...], and Daniel Jeanmonod
Dr. J has been doing PTT for a long time with radiofrequency before FUS was invented. I don't know how much pallidotomy hits symptom wise but I know the clinical trials say it is mainly for dyskinesia.
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