Lena will not be fielding questions. She is recovering in the hospital.
Previously, some who have had this procedure feel they have been criticized. Brain surgery is a tough and very personal decision. If you are not supportive of her decision, please do not comment on this thread.
Lena has allowed me to post this because we feel it may benefit other PWP
"I made it through surgery this morning and now resting comfortably in the hospital. I had six brain sonifications . After the first my tremor and rigidity quieted. By the third it was mostly gone . I would say my body is about 90% symptom free! I expect some ups and downs over the next few months and maybe even over the next year. My right is now better than my left.
My left improved as well as my right
.My pills do nothing anymore for me on an immediate basis. No dyskinesis and no benefit. However my doctor wants me to stay on for at least three months before we wean off, Nothing negative to report 😃 please direct any questions to the Forced ultrasound for Parkinson’s group. Thank you all for the well wishes!!"
PS. Lena says Dr. J told her he has been tracking numerous patients for five years none of whom have progressed & that 70% of bilateral procedures have been able to discontinue all pharmaceuticals.
Marc
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I LOVE this!!! MBAnderson , lenamm , Trixiedee , and anyone else who has undergone PTT are my heroes. You are all courageous, thoughtful, and inspirational. God bless each of you.
thanks also to all the others who, like the ancient pioneers, explored the “terra incognita” of MRg FUS PTT with courage and determination, leading the way for this promising technology for all the others.
Thank you so much Marc and Lena for the info. This is so encouraging. For those of us for which meds are not working or for which side effects are worse than the disease, it's the only hope to get some of our life back. This is priceless. Lena, Trixiedee and Marc: thank you for bringing this info here!
We don't know that he hasn't. He may have been rounding off. Lena may have referenced 5 years. He may have been referring to bilateral procedures which are separated by a year. When I'm there next, I may try to get a more precise answer. I think he has a paper coming out soon that addresses this.
While you're at it please ask him if he sees the therapy ever being available for those who are less advanced in the future.
If early DBS can reduce the need for PD drugs and decrease the risk of progression as seen in the below, then it probably applies to FUS PTT especially in light of the revelation that the majority may be able to get off the drugs. Most of us know of the damaging effects of the drugs in the longrun.
'When given to people at earlier stages of Parkinson’s disease, deep brain stimulation (DBS) reduces the complexity of their treatment, while safely providing long-term motor benefits and possibly slowing disease progression, data from a five-year pilot trial suggests.
A planned Phase 3 study has already received the go-ahead from the U.S. Food and Drug Administration (FDA). If these results are confirmed in a larger group of earlier stage patients, DBS will be the first therapy shown to be effective at slowing disease progression...
These results suggest that early STN DBS + ODT is a safe Parkinson’s disease treatment with the potential to provide long-term, sustained motor benefit over standard medical therapy while reducing the need for, and complexity of, anti-parkinsonian medications and their associated complications...
With this pilot study, we’ve shown that if DBS is implanted early it’s likely to decrease the risk of progression, and if this is borne out in our larger study it would be a landmark achievement in the field of Parkinson’s disease."
I believe there's a strong correlation with less/no drug intake amongst others, just as that article indicates especially for newly diagnosed. I'd suspect stopping the progression is only possible when you concomitantly take other proactive measures to stop further inflammation, insulin resistance, and oxidative stress (drugs, toxins, poor detox, etc).
We often don't know why something works in neurology and psychiatry meds. Perhaps there is something in the location that shuts down a cell death signalling protein or receptor circuit in a dopamine producing cell, down the block or in some separate nearby bundle or even just a receptor a couple microns down the same cell's trunk, or switches on a growth factor or an enzyme somehow, interrupts a cell death gene signal or turns on a growth signal in a kinase somewhere. We do ablation to attenuate static or excess electrical heart rhythm cells or connections, that's pure electrical work. Some research and discoveries happen "backwards." Some molecules treat or cure because some atomic level electron flow or charge shape or path or bond is changed by mutating the shape of a couple amines in a protein molecule or the angle of an element in a molecule, but we don't learn the mechanics until much later (true of LOTS of effective psych meds for example). An electrode with a microcurrent here or there triggers a memory, picture, or smell, but only if it is charged in a very particular location. Some reliable treatments or effects are just stumbled upon.
One explanation for PTT stopping progression is that suppression of TCD gets rid of some of the toxicity that would normaly remain/spread in pd brain:
Some unclassical considerations on the mechanisms and neurosurgical treatment of Parkinson’s:
"nigral dopaminergic cells are very fragile, a fact which makes their decrease along the years unsurprising. There are however other causes of cell loss. The first ones, calcium toxicity and excitotoxicity, can be put together as two mechanisms directly related to the presence of the TCD thalamocortical dysrhythmia. (... ) The presence of these toxicities and their suppression by the PTT bring this intervention beyond the symptomatic and causal levels into the protective domain."
I can't say that I understand the process of all his writings, but I do trust what he says based on his extensive experience in research and thousands of brain surgery over the years :
DANIEL JEANMONOD
Dr. Daniel Jeanmonod graduated from the faculty of medicine at the University of Lausanne in 1978. His doctoral thesis in 1982 was in the field of neuroplasticity. He trained in neurosurgery in Lausanne, then in Queen’s Square (London) and Lyon, obtaining his Swiss title in neurosurgery in 1989. He was head of the department of functional neurosurgery at the University Hospital Zürich between 1989 and 2009, and has held the titular professorial chair for functional neurosurgery at the University of Zürich since 1993.
Also convincing:
" MRgFUS PTT has been approved by the swiss health state department and is covered by swiss social insurances."
Switzerland is not exactly a third world country... so I trust that the state knows PTT is beneficial in the long run
"Switzerland is not exactly a Third World country..." Now, there is an understatement. The Wharton School and US News and World Report names Switzerland the best country in the world for 3 consecutive years (healthcare, education, crime, housing, transportation, happiness, etc.) One seemingly innocuous feature which is revealing is that nobody litters. There is 0 litter on the main streets in downtown Zürich. Who does that?
Yes, I agree with "excitotoxicity." It would have a direct impact on methylation imbalance that contributes to everything going out of whack under finite resources so to speak crudely while having to deal with pathological oscillations.
"In a context of brain surgery and particularly of lesioning procedures, an intervention should in our opinion provide better results than drug therapy, thus justifying surgical risks. Hence our central selection criterion of therapy resistance. To follow our line of thought, we have compared in this study postoperative off-medication state with preoperative on-medication state, allowing us to assess directly the superior relief obtained by surgery as compared to medical treatment."
Yes the best candidate is ones whose offs and ons are similar. Mine were two points apart on the scale. Unlike DBS where those that do well have good ons with meds, but severe offs.
What about people who have dyskinesia when on and severe offs? That’s how I was. My meds never worked without causing dyskinesia in the last year or two. Now nobody would know I have Parkinson’s.
Yes, I meant waiting for drug therapy resistance, which in most cases would be long-term to well over a decade except for the outliers who don't respond well outright such as yourself. It's still too early to tell but if the procedure truly results in long-lasting relief without needing the drugs for a certain cohort, then it would seem well worth the surgical risks to avoid the neuro complications and oxidative damage associated with the pharma drugs that could hasten the disorder exacerbation.
For the time being while we lack the long-term data, I do agree on the stance of taking the precaution to be prudent, but that could possibly change as in early DBS that we're finding out may not be truly reversible either.
DBS is definitely not reversible as I know a couple of people who had worse symptoms after DBS and they can’t get it removed. Even with it switched off they feel worse. And it doesn’t last for decades either.
Knowing a couple of people that can't have their DBS removed (or perhaps they have been advised against having it removed due to an assessed higher risk associated with brain surgery) is a flimsy basis on which to conclude "DBS is definitely not reversible".
They're seeing that it may only be reversible after a shorter period of time, not counting the tissue/scar damage as well as significant surgical risks.
"Ruge et al hypothesise that neural reorganisation may occur in patients who have received long term-stimulation of more than 4.5 years, noting that a persistent clinical effect was not similarly observed in a previous on/off study of DBS after only 6 months of treatment."
I believe Dr Jeanmonod usually asks patients to continue pd meds for 3 months and than see if possible to wean off slowly. But I don't know why. I believe, really not sure, MBA didn’t want to continue meds after his procedure because of constipation. Marc is that about right?
My first side I weaned quickly as my dystonia induced by Sinemet was bad on my untreated side. This time he wants to keep my dopamine up so I don't have apathy even though it does nothing for my motor signs anymore. So kind of like a thyroid replacement pill. After three months we will revisit it. He wants my healing to be as smooth as possible. I am very tired and sleeping about 15 hours a day. This is Dr. Jeanmonod and Galley here in Switzerland.
Guys. It seems to me that we as a community need to be communicating this to influential people in Parkinson’s medical circles? I for one have written three letters just last week to individuals who could be described so. It seems crazy to me that folks are having to travel all the way to Switzerland for this. I’ve heard incidentally that Japan is ready to implement the Swiss procedure within their health care system.
Yes, are you in the UK? My neurologist started off sceptical at first but last time I saw him he looked really excited at the prospect of me having PTT FUS. I can’t wait to show him the changes.
I am just seeing this for the first time. I didn't mean to steal your idea when I wrote a post about writing to the Michael J Fox Foundation, but I am glad you and others are also trying to spread the news about PTT. I think the success of Dr. Jeanmonod and SoniModul should be reported by every major news outlet and supported by every major Parkinson’s Disease organization. Thanks for getting the word out!
Yes, I’m in Brum and wrote to the head of communications at Parkinson’s U.K. I did get a reply and am currently writing to the head of radiology at Imperial College to make sure he’s aware of Sonimodul. This chap is on our side but I’m unsure if he’s aware of the full possibilities than FUS can offer PWP.
If you are able, consider sending them Dr.J's paper "...51 consecutive cases..." We should also include doctor/neurologist professional associations, i.e., the groups that sponsor their conferences
Clare Bale who is head of PR there wrote back and said that they were aware of it and sent me an article they’d written about it. It was decent enough but I didn’t honestly get the impression she fully understood the new place that it’s been taken in Switzerland. The article DID however include an interview with the major domo of FUS at Imperial College Hospital so I’ve written to him directly just two days ago. I heard back btw from Roger Barker the stem cell leader at Cambridge. His concern re. FUS is that if stem becomes possible, those who’ve had it wouldn’t be able to benefit from it due to the lesions made?
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PREPARING FOR DBS SURGERY. VERY WORRIED ABOUT THE INEVITABLE SIDE EFFECTS.
DBS should I or should I not??
