If some of these YouTube links don't work, go to YouTube and enter focus ultrasound tremor or Parkinson's.
It does hurt to have the helmet/bracket screwed into your head. Actually getting the Novocain shots hurts more. On a scale of 1 to 10, I give the pain a 7+, but it only lasts for a few minutes.
My impression is that it has benefited everyone, except perhaps those where the doctor missed the target. A forum member here has said the benefit only lasted her 3 or 4 months, so maybe success is defined as how long the benefit last. I don't know if she had a thalamotomy or pallidotomy. My expectation is 18 months, my hope is maybe more.
Doctors are tightly limited as to what they can say, but I am of the impression that pallidotomy relieves tremor, rigidity, and bradykinesia. I suspect there is some spillover benefit into other areas and I believe our brain does some work around tricks.
The tremor disappears at the time they're doing the procedure. While I was in the MRI, they announced that they were going to do another sonication which is a 15 second burst of soundwaves. Then they come in and examine the tremor. Then they go back and keep doing sonication's until the tremors gone.
Because it was a trial, the doctor was not allowed to acknowledge that it was a sham procedure, but in my case, I'm sure he knows I know I got the sham.
I have 3 follow-up evaluations, after which I can schedule the real thing, which I will do.
They do 2 of these every Monday and sometimes they do a third during the week. They are getting far more people than they anticipated and are expecting the stop recruiting in all locations at the end of this year.
Marc
PS. In the paper Iqbal posted, there is some speculation that it may slow progression. Scuttlebutt is 1 of the women who had done in Switzerland has enjoyed the benefits now for 6 years.
I would encourage you to watch these videos. I researched the cr*p out of this 1 and I'm confident it's the right thing for me.
Before finding out you had gotten the placebo... , I had inquired about participating in the trial, in Toronto, Canada:
"Clinical Trial of the Management of the Medically-Refractory Dyskinesia Symptoms or Motor Fluctuations of Advanced Idiopathic Parkinson's Disease With Unilateral Lesioning of the Globus Pallidum Using the ExAblate Neuro System"
which can be found at: clinicaltrials.gov and search NCT03319485 or PD006 under Find a Study.
I started with the clinics in Canada, specifically Toronto and was told the same thing they told me from Switzerland, i.e., they don't take US citizens. Apparently we're not so popular around the world. Wonder why?
A law that allows us to sue foreign hospitals in American courts can't be good for people. I can't tell if it was hospital associations or lawyer associations that lobbied that one through.
"I have 3 follow-up evaluations, after which I can schedule the real thing, which I will do"
Do they offer the real thing to everyone who got the placebo?
Here's what they told me about the sham:
"A total of 92 subjects will be included in this study. 69 subjects will receive an actual Exablate treatment and 23 will receive a sham procedure in which no energy is delivered".
Nothing about a second procedure.
.........
About :
"Scuttlebutt is 1 of the women who had done in Switzerland has enjoyed the benefits now for 6 years"
I couldn’t find her comment, but I'm wondering if she got it done at Dr Jeanmonod’s clinic. If so, I'm not sure it's the same procedure. Dr Jeanmonod’s is
"interruption of the pallido-thalamic pathway without touching the thalamus"
Versus:
"Unilateral Lesioning of the Globus Pallidum"
I sent a request asking Dr Jeanmonod’s office yesterday about the difference. Have not yet gotten a response.
The commitment to offer it to people who get the sham treatment is in the 11 page consent document they require us to sign. I will get it out and quote you the exact language. Also, my wife and I went over that point explicitly with the doctor in our initial interview and he was clear that they would do the real procedure if I got the sham.
And, when the procedure was done and they were unhooking me I I told the doctor my evaluation would be complete at the end of November and that I wanted to be scheduled immediately in early December and he said, "talk to the scheduler." which, technically, he should not of said because it was an indirect acknowledgment of the sham, because obviously if it was the real procedure he would not have said that.
Also, when they were moving me out from under the MRI machine, 1st thing I said was, "sometimes you're the windshield and sometimes you're the bug and today I was the bug." He asked what I meant by that and I told him because I got the sham. He asked how do I know and I said because my tremor is exactly the same as it was when you put me in the machine. He said nothing which also indicates to me an acknowledgment of what I was saying was true.
I don't believe they would have a lot of success recruiting if they didn't offer that because it's not like taking a placebo pill. It's not exactly for the faint of heart.
Most important, contact the clinic you're interested in and ask them via email and expect them to answer via email. Or, go meet with them as you would if you were entertaining the procedure and in that 1st meeting they will give you a copy of the consent agreement, which I consider to be a contract.
Look for the email I copied and pasted from Switzerland and send your inquiry to the name on that email.
The difference is the target. The Switzerland target is in between the thalamus and the pallidum, whereas the US target is a more conservative approach closer to the pallidum. They have more experience in Switzerland and I believe that US will eventually begin using the same target.
The lady I mention whose benefit has lasted 6 years was treated by Jeanmonod.
1 of the screening questions I used to measure the competence of the doctor who did mine was to talk about the target area in Switzerland. He said he has talked to Dr. Jeanmonod several times and in spoken with him conferences.
I have complete confidence in the locations in the US. I believe all of them are doing 10 procedures, plus, per month. It was reassuring to talk with the doctor who was familiar with every abstract I brought up.
There were 10 or 12 people who participated in my procedure, half of whom are doctors. This is a seriously sophisticated equipment and protocol. I also believe they had a person from Israel who was an employee of the manufacturer who was involved in everything.
It should of said brain damage, not brain-damaged (voice recognition software doesn't work so well if your voice is imperfect) and what I meant by that was the process of scheduling the travel arrangements for the evaluation and the travel for the preop examinations and MRIs. And what I meant by the investments was I'm traveling to Columbus Ohio from St. Paul Minnesota and for the sham treatment will take 5 trips now I have to make 5 trips for the real treatment. $$$
Toronto train many of the doctors in US. The doctor who did mine, spent 2 years working in Toronto before he came to Columbus. Toronto may be the epicenter of FUS in North America.
Okay, thank you for the heads up. I keep all such emails and will go back and review all the communication, but again, I can imagine circumstances where they might be using different email addresses, but I'll check it out.
I Googled the email address and turned up "University Hospital Zurich". So it’s not Dr Jeanmonod’s clinic. But I guess their answer applies just the same.
Thanks. Maybe I screwed up. Maybe some doctors work at both. I find it common for doctors to work at both universities and hospitals. Many of the doctors at the VA also work at the U of MN and many of the doctors at Wexner (FUS clinic) also work at Ohio University. Anyway, I've emailed both of the ones I was in communication with and will wait to hear from them.
That's it!!!! I've wasted 2 months. The Swiss government does not allow government-sponsored universities, i.e., taxpayer institutions to provide healthcare to foreigners, but a private clinic can. Voila, Switzerland is back on the table.
I was wrong about the firmness of the commitment in writing. We took up this issue in our meeting with the doctor and he was clear, albeit verbally, that we would be offered the authentic procedure if we got the sham, however the wording in the consent agreement is, "... If you receive this sham procedure your physician will talk with you and you may be eligible to crossover and receive the actual ExAblate."
I just had a dagger of fear go through my heart because by the time my 3 month evaluation ends, they will have performed enough actual procedures so as to have no need to spend the extra money on us doing the procedure again.
Another issue has been bothering me. If I do get the trial procedure done and results not significant or don’t last, I wonder if that would disqualify me for Dr Jeanmonod’s procedure.
If Dr Jeanmonod’s target is the one that works best/longest, we would self exclude ourselves from the best treatment...
I, of course, don't know, but if you get the actual procedure done I do believe that would put you at risk of being disqualified for the same reason that no one is doing both sides the brain, i.e., it doesn't matter who does one-sided brain, what matters is that the doctors would be in a position of having do both sites the brain.
If I had the money and if I were not a US citizen, I would get on the waiting list at SoniModul. I would give up US citizenship in a New York second if I could spend the next 6 years symptom-free.
This is amazing. I know there have been other Americans who have been to Solothurn, so I've really been confused by the reply I got from Zürich.
And, since I got the sham procedure I assume I am not disqualified, i.e., I have no lesion, i.e., my brain is exactly the same as it was before I spent 4 hours in an MRI.
Thank you, thank you Lena.
Apparently, I've missed your posts or maybe you haven't posted your experience, but I assume you're very happy with the results.
My impression is there are very few adverse events, the risk is very low and that nearly everyone benefits although that may vary in for how long?
I will probably go back to have side two treated next year but Dr. J wanted to give more time to see if it will calm on it's own. I am tremor dominant with a lot of dystonic dyskinesia.
My husband (PwP) and I start to entertain the idea of having this lesioning surgery at Sonimodul. He is tremor dominant but early stage. Would I have to email the doctor? What is the criteria for the surgery. Where do I start? Thanks.
Yes, Marc I found the website and realized there is a "Contact us." Even my husband is starting to like the idea. Don't know if he meets their criteria, will find out.
According to lenamm's comment, maybe you should address the email you had sent to Zurich University to Dr J's office. Maybe his private clinic operates under different laws than the University?
I just got an email back from the doctor in Columbus, Ohio who said he would try to figure out how to schedule me for early December, (we-haa) so now I'll send my stuff to SoniModul and see if I can get an answer out of them before I have to commit to the pallidotomy.
My previous Neurologist / motion disorder specialist in Toronto said that he could not recommend DBS to me. Too dangerous , not enough successful outcomes, not supported by hospitals as success rates to low. Mean while in other countries , hospitals are doing the surgery every day. it very much matters where you are. It is only by people like Mark taking very high risk at his own cost that eventually the world will find alternate treatments. Thank you for the courage Mark. Good Luck
I often marvel at how and where I find little nuggets of information that turn out to be critically valuable.
This thread may turn out to be the most valuable content in my life since PD.
Trixiedee brought to my attention I sent my stuff to Zürich University Hospital instead of SoniModul and JANVAN connected the dots that a government subsidized hospital cannot provide healthcare to foreigners, but that a private clinic like SoniModul can, reinforced by Lena, thereby putting the Pallido-Thalamic Tractotomy procedure back in play for me and Lena's willingness to share her experience provides the motivation to persevere.
Others have focused my attention where it needs to be.
I don't mean to get soppy, but this forum is the best thing that's happened to me.
Thank you so much for your encouragement and support and knowledge and generosity.
You have brought tons of nuggets of information that turn out to be critically valuable to a lot of people too, so this is just a return on your own past generosity...
FYI: In a just published study on the focused ultrasound trial in Tokyo (pallidothalamic tractotomy for dystonia) rating scale scores were "significantly improved... The most common adverse event was reduced voice volume (6 patients), which was mild and did not interfere with the patient's daily activities." ncbi.nlm.nih.gov/pubmed/312...
A summary of the recently completed Tokyo trial states that the work of study principle Takaomi Taira, MD, "builds on previous research by renowned Swiss clinician Daniel Jeanmonod, MD [Sonimodul]. In the current study, Prof. Taira plans to treat 10 patients using Insightec’s Exablate Neuro device. As with other focused ultrasound studies for Parkinson’s disease, he will treat unilaterally, meaning he will only treat one side of the brain. Typically this is the side of the brain that controls the patient’s dominant side. However, if the patient desires bilateral treatment, he will consider treating the opposite side of the brain during a separate procedure at a later time." fusfoundation.org/news/japa...
*A staged bilateral pallidothalamic tractotomy trial is currently recruiting patients in Tokyo.
As mentioned, links provided refer to the recently concluded trial. A new BILATERAL FUS/PD trial (using the pallidothalamic tractotomy) is “currently recruiting” in Tokyo.
At the moment I just have the FUS report mentioning upcoming trials. Unfortunately the upcoming bilateral PTT trial is the only one without a live link. I sent an inquiry via the earlier study. Will inform if it provides an answer.
“Clinical Trials
“There are several recent trials that assess the feasibility, safety, and preliminary efficacy of focused ultrasound to treat different symptoms of Parkinson’s.
“Tremor-dominant Parkinson's (thalamotomy) This trial has completed enrollment for patients.
“Parkinson's dyskinesia (unilateral pallidotomy) This trial has completed enrollment for patients.
“Parkinson’s dyskinesia (unilateral pallidotomy) This international pivotal trial has begun recruiting patients in the United States.
“Parkinson’s dyskinesia (unilateral subthalamotomy) This trial has completed recruiting patients in Spain.
🔹“Parkinson’s disease (Staged bilateral pallidothalamic tractotomy) This trial is currently recruiting patients in Tokyo.”
I've been to that page a few times over the past few months looking for a PTT trial. When I could not find one, I sent an email to the FUS foundation and got a reply back saying that SoniModul is the only clinic using that target. I went on the Tokyo website and there is nothing there, either, so I sent them an email and have not heard back. So far as I can tell, I think we're stuck going to Solothurn if we want a PTT -- which I do.
I find most of these websites are not perfectly current.
I agree, MBA. Despite a few other medical facilities now getting certified in and offering Insightec's MRgFUS procedures, it appears Dr/Prof Jeanmonod at SoniModul there in Solothurn has the broadest experience and greatest credibility. SoniModul was the first to receive Insightec’s certification to offer standalone treatments back in 2012 and, with over 2 decades working with pioneers in the obscure neurophysiological realm of 'thalamocortical dysrhythmia’, Dr. Jeanmonod and his team appears set to dominate the niche for the foreseeable future. Furthermore, SoniModul is the ONLY facility offering the pallidothalamic tractotomy (PTT) with a bilateral option thus far. Even those in Insightec's home country lag behind: rambamhospital.com/essentia...?
The fact that as far back as 2013 Dr. Jeanmonod was challenging the "classical dogma" that Parkinson's is 'neurodegenerative' or 'progressive' and that its progression "cannot be stopped” is another plus. In his 2013 paper, "Some unclassical considerations on the mechanisms and neurosurgical treatment of Parkinson’s disease”, he discusses all this and concludes that the treatment “should provide long term stable results and the possibility to stop drug treatment”.
After reading this report and the equally cryptic "The Concept Behind" page/link on the SoniModul website a few times, the science behind the procedure slowly begins to make some sense. Using analogy, he likes to refer to our brain's cortex as 'the orchestra', to its sectors (motor/mental/sensory) as ‘the players’, to our thalamus as 'the conductor', and to the complex interaction between these areas as either ‘thalamocortical rhythymicity' or (as in the case of anomaly like PD) ‘thalamocortical dysrhythmia' (TCD). Scattered throughout these meandering accounts lies the mechanism at the root of PD’s particular “TCD” along with the rationale for the PTT target i.e., overactivity within the thalamocortical system, kicked off by the PD patient's loss/dysfunction of dopaminergic cells and the resultant ’overinhibition' of the globus pallidus (GPi) which is ultimately best resolved by the palidothalamic tractotomy (PTT) in order to resume “a more normal thalamocortical dynamic".
I also find a couple recent tech reviews on the subject encouraging. A 'Systematic Review and Meta-analysis' from Dec.2018 concludes, "Treating tremor in Parkinson’s patients using non-invasive and focused-ultrasound lesion surgery is associated with better quality of life when compared to deep brain stimulation... focused ultrasound is gaining in popularity, and one study suggested that it may significantly improve tremor and quality of life." Source (summary): parkinsonsnewstoday.com/201...
A more recent study/abstract posted on Wiley Online Library last month titled "Focused ultrasound in Parkinson's disease: A twofold path toward disease modification" notes that "A major unmet need in Parkinson's disease (PD) is to slow the inexorable progression of neurodegeneration. Clinical trials that evaluated promising pharmacological strategies have repeatedly failed. Nonetheless, the advent of focused ultrasound provides new opportunities toward the goal of developing a safe and effective disease‐modifying therapy for PD. Here we discuss the rationale, possible avenues, and challenges along this path, exploiting the potential of focused ultrasound for (1) performing focal thermal lesions to restore the basic basal ganglia abnormalities associated with dopamine depletion, and (2) transiently opening the blood–brain barrier for targeted delivery of therapeutic agents. First, the classic idea of excitotoxicity mediated by hyperactivity of the subthalamic nucleus suggests that focused ultrasound subthalamotomy may offer a clinically viable disease‐modifying therapy in very‐early PD. Second, the concept of retrograde nigrostriatal neurodegeneration, supported by our recent cortical pathogenic theory of PD, points toward the putamen as a principal site for focused ultrasound blood–brain barrier opening and targeted drug delivery. In principle, both therapeutic strategies—subthalamotomy and putaminal blood–brain barrier opening—could eventually be applied in the same patient." Source: onlinelibrary.wiley.com/doi...
Like you, I believe MRgFUS to be the most viable prospect currently at our fingertips for slowing, stopping, and maybe even reversing some aspects of PD's ongoing progression. However, the curious absence of a steady stream of persuasive (and current) testimonials from FUS-treated PD/ET patients - and of any recent news/press releases from the handful of MRgFUS practitioners currently pioneering the MRgFUS technology - is one of the things that keeps me lingering on the fence a bit longer.
Surely, they have performed many procedures over the years, so, apparently, only one of those people are on HU. Still, you would think we would hear more about it.
Recent news from either patients or from the SoniModul team has also been unusually scant on their Facebook page, on Youtube, and on their own website.
They put their track record/outcomes on their landing page and those are pretty impressive. It may well be that the vast majority of their patients are from Switzerland and the nearest countries and and perhaps those people just are not into social media such as Facebook and PD forums. Who knows? It is curious, though.
This conversation from a year ago contains a couple of less favorable comments about the sonimodul clinic:
JANVAN
JANVAN
a year ago
Interesting, but a small privat clinic in Switzerland does it already since 2013.........with a lot of (not 100%) good results......and also since then payed back by the insurances..... sonimodul.ch
Reply
iqbaliqbal
iqbaliqbalJANVAN
a year ago
Thanks for sharing
Do you know someone who has been there for treatment
Reply
Trixiedee
TrixiedeeJANVAN
10 months ago
A friend went there and was happy with the results. But her speech is now very slurred.
1 likeReply
JANVAN
JANVAN
a year ago
Yes, but after a year, she had to go again for another treatment......because the symptoms came back.
Also, but not namely, 2 persons who weren't so satisfied......
I've never doubted the results are variable and that some are unhappy with the results. Do we know what caused the poorer results?
Out of 288 interventions, 16 cases of worsening. "Neurological worsenings were moderate and mostly transient and seen always in the context of preoperative reduced neurological states." Sounds like these are not due entirely to the procedure.
The upside odds far exceed the downside odds and more important the magnitude of the upside benefit far exceeds the potential downside deficits.
No one should go into something like this casually. It is, after all, still brain surgery.
For the potential upside benefit of 70% for 6 or 8 years, possibly more, and potentially slowing the progression, its worth the risk to me.
I wonder if an explanation for the lack of testimonials could be the number of people with Parkinson's living in the countries represented by participants on this forum are millions. SoniModul has done 288 procedures -- a minuscule fraction of a fraction, so it is not surprising that there isn't much talk about. More people take CoQ10.
Dr. J recommends highly that those who have surgery don't spend too much time on promotion. I understand why as my experience is that many people are very abrasive and want to question the validity of my results. BTW 5 months out and extremely happy. Still issues on my untreated side but I can have surgery 2 for that next year.
Hi I had a PTT at SoniModul almost three years ago. Results still good to date. I am having the other side done early next year. Dr. J and all at SoniModul have my full trust.
Start of Tremor about 4 years before having the procedure done. Left hand and leg tremor were. 90 to 95 % eradicated immediately. My right hand has a bad tremor now. It’s taken me over 5 minutes to type this. LOL
Thank you for your reply! Will you go back to have the other side done?I read somewhere there are a few people that after the procedure were worse, all procedures have risks but just wondered if you knew in what way were they worse? Thanks😊
You might want to consider voice recognition software. It makes a big difference for me. You can do everything with your voice that you would otherwise do with the keyboard and mouse.
I was wondering if MRgFUS uses the same principle as cardiac ablation for arrhythmia (focal thermal lesions). In my husband's case, the cardiac ablation eradicated tachycardia and the need for medication. No problems since he had the ablation 7-8 years ago.
You were fortunate to be able to watch it on a monitor. I think it's really cool.
They can pick <1 mm, dopaminergic, neuronal pathway virtually in the center of your brain and heat it up knowing in real-time precisely the temperature that is occurring in the target area without affecting surrounding tissue and without the super expensive, high risk exposure both from the surgery and from being in the hospital and all at a fraction of the cost -- and (mostly) correct the problem in a few hours instead of a few months or years. It's really unbelievable.
Thank you for your thorough reply. I had not seen the most recent article in Wiley online Library. Excellent article.
I did get an answer from the hospital in Tokyo and they are indeed doing a PTT trial, (although I can't find anywhere that it is published,) but only need 3 more patients and don't want to take foreigners because they need to do an evaluation once a month thereafter.
I, too, am puzzled as to why we don't hear from more people who have had done. I do not know of anything with a lower frequency of adverse events and with as much potential upside as FUS PTT. Far as I can tell, FUS PTT is far and away my best option. I know of no pharmaceutical in trial that comes close -- so, why isn't it being shouted from the rooftops?
I sent all my stuff to Solothurn last week and got a reply the following day. I have a scheduled phone call tomorrow with Dr. Jeanmonod at 4:30 PM his time.
My problem is that I am already in the clinical trial for pallidotomy and the final evaluation is not until February 10, 2020, but Jeanmonod needs proof that I don't have an ablation and there is no way to prove that except provide them with the posts surgery MRI, which cannot be done because it would compromise the study being blind. So, if they accept me, I'll likely be stuck waiting till next March. Boo-hoo.
I'm not put off by wait because I understand the normal wait is 4 months, so if they decided next week, that would put the procedure in the middle of January, so I really only have 6 or 8 weeks longer to wait.
You can drop out of any study at any time. I'm not recommending that, but you can if it is in your best interest. I think you will need a recent MRI to send to Switzerland, regardless.
I am not going to drop out of the study. I made a commitment. That I got the sham procedure was my bad luck. I wish they would work in closer collaboration with me, though, regarding scheduling follow-up evaluations.
In case you missed it above - Dr. J recommends highly that those who have surgery don't spend too much time on promotion. I understand why as my experience is that many people are very abrasive and want to question the validity of my results. I came out wanting to shout from the rooftops but quickly got very tired of having to defend myself.
My impression is that there is a lot of disbelief in there being a surgery that works so well that no one knows about and that translates to it can't be true. I'm the messenger. Dr. J actually talks about that hurting one of his patients here. sonimodul.ch/wp-content/upl...
It's a unique and interesting position he takes in this paper that the whole narrative 'it's progressive, it's not curable, you can only get worse' is itself very destructive and accelerates progression and that the whole PD healthcare community should stop espousing this theme.
Reading that paper made me really realize he was the surgeon for me. Not brave - I was non functional, on the edge of needing assisted living at 46 years old ( couldn't work, drive, walk, shop, cook, etc) - the risk seemed incredibly small given the possible reward.
I wrote Solothurn on their Website "contact us" page to ask for the difference between their procedure and the one from the clinical trial. I got no reply. Waited a few days and asked again. No reply.
My guess is they don't want to get into back-and-forth emails explaining (the difference between or answering questions re) their procedure since it is explained quite thoroughly on their website and in their videos.
I assume you filled out the form they provided (and did not email them?) I would just send them back a message briefly describing your situation and telling them you would like to be considered.
I just said something along the lines of, "I am a 73-year-old man who was diagnosed with PD in July 2011. I am responsive to levodopa, but it is losing its effectiveness. Please consider me for your FUS PTT procedure. I can easily provide you with whatever health records and videos you request."
They emailed me and the back-and-forth communication since has been via email. They provided a 'cloud,' listed what they want in a video and I uploaded it all.
It wasn't my 2nd call. I was wrong about the date. It was scheduled for the following Monday.
I have not told the clinical trial people and don't plan to until the trial is nearly over because there are too many things that can cancel the Switzerland appointment and I want to leave the actual pallidotomy procedure as my fallback option. Nothing I'm doing with Switzerland has any effect on the follow-up evaluations and I will fulfill my obligation.
I did discuss the difference with the neurosurgeon that performs the pallidotomys and he said he was limited in what he could say to the written descriptions in the trial, so I was unable to have a detailed description of the different outcomes.
He did say the target in the US is a more conservative target which I interpret to mean does not affect the symptoms as broadly. He allowed the impression that there MAY be benefits beyond tremor, rigidity, bradykinesia.
PS. If, when you make your decision, you elect to the pallidotomy, when you meet with the doctors in Toronto, consider asking them to change the wording in the consent agreement from, "... You may be eligible for the actual procedure..." to, "... They shall perform the actual procedure... " (when they unmask you.)
They may or may not agree to that. It's worth a try.
No, February is the date of my last pallidotomy clinical trial evaluation. My PTT date begins the week of March 9 for 2 days of preop test, then the actual procedure on March 11, then 2 days of follow-up evaluation.
Yes, it was, but they clearly did not want to make it a focal point and declined to elaborate. I asked them if 18 months was a fair expectation and he nodded and mumbled yes, but then moved on to something else. When these doctors are involved in trials, getting information out of them is like pulling teeth and that they won't talk outside the descriptions of the trial -- and I understand that and agree with it.
I have never been able to find a solid estimate as to duration. So few people have had FUS it's hard to find someone to talk about it.
I had someone in one of the dyskinesia FUS trials message me and say she only got three months. I heard second hand of someone else who only got three months (not sure if it was the same person). On the other hand everyone I have heard from who got PTT has had the results hold on the treated side although some are now going back for side 2. Longest PTT person I found was 4 years solid hold of symptoms on treated side. But still four years without worsening is amazing.
A few months ago a woman posted a comment saying that she'd only got 3 or 4 months. Maybe the same person. I don't know which procedure she had, thalamotomy, pallidotomy or PTT? Do you?
The woman who messaged me directly had pallidotomy. The other person was either thalamotomy or pallidotomy - I don't know if they specified - it was someone posted about someone they knew who went through it - I think it was in one of the facebook groups
Marc, did you speak about this with your own MDS? Are they onboard with your intentions? I got the feeling that if I underwent any procedure that they don’t endorse or know fully about, then they may refuse to work with me if after I undergo such a procedure. I can understand why though. After all, how will they treat you if complications develop or the procedure doesn’t work. How will they know what to tweak?
Yes, I have spoken with my neurologist about it. I get my healthcare at the Minneapolis VA and they are very supportive and responsive of everything I do.
For example, none of them hesitate to say I should not be taking Nilotinib, but will ask the pharmacy to look up drug interactions, order a blood panel or in EKG whenever I want one.
They, like I assume all doctors, have a responsibility to provide healthcare even if they don't like the choices I make. I would be very surprised if a doctor refused to deal with you because you volunteered for clinical trial. Usually that is considered a badge of honor.
I value their opinion and they need to respect my decision not to follow their opinion.
I would suggest you be totally upfront with them and explain exactly what you want to do, and why you want to do it and ask how they feel about it.
In a very real way doctors are just like horses or dogs in that they're always trying to be in charge, but once they learn they're not, they're fine with that.
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Are you using this PD-tracking app?
Ketogenic lifestyle & parkinson
Check out this wheelchair! SO COOL!!
Recording available - Dr. Jonathan Sackner-Bernstein: \"What If I Discovered the Silver Bullet?\"
