Too many false hopes. Is FUS one of t... - Parkinson's Movement

Parkinson's Movement

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Too many false hopes. Is FUS one of them?

Farooqji
Farooqji

Seemingly every few months the same story plays out in degenerative disease communities around the world. News circulates of a breakthrough therapeutic development, of resurrections performed in a line of mice or miraculous recoveries in a handful of patients.

One such story is playing out right now in the Parkinson’s community. The therapy this time is focused ultrasound, a new tool that allows surgeons to non-invasively lesion parts of the brain, supposedly cutting off the faulty wiring believed to be responsible for certain symptoms. Facebook groups have been filling up with stories of patients paying up to twenty thousand dollars for the procedure. Many of those patients then rush back to the group, eager to announce their results. Here is the first message the author saw posted in one of those groups as he was writing this…

tmrwedition.com/2021/01/16/...

70 Replies

Still, it seems FUS is not a false hope.

This article is well written and well reasoned. However, it's not like some random guy set up a table on a street corner and started performing focused ultrasound procedures. Two forms of Focused Ultrasound for Parkinson's Disease have undergone rigorous clinical trials and are FDA approved in the United States. A third form (PTT) has been approved and used in Switzerland for nearly a decade and is now the subject of clinical trials in Japan. We all need to decide for ourselves, but I remain very encouraged and excited.

Parkie-
Parkie- in reply to jimcaster

I agree with you :

'it's not like some random guy set up a table on a street corner and started performing focused ultrasound procedures".

And for one thing, Dr Jeanmonod was head of neurosurgery for 20 yrs at Zurich Hospital. Hard to see his patien's results associated with "News circulates of a breakthrough ... of resurrections performed... or miraculous recoveries in a handful of patients"

As one HU member once said "the haters are out... Not everyone likes good news"...

Seems like the medical mainstream view. Trust the science means also trust big pharma. Great that's there's finally a vaccine. Not so great that Vitamin D, zinc, Ivermectin and others were ignored in the meantime leading to so many unnecessary deaths. I have an open mind about FUS, will be interesting to see how Marc and others continue to get on.

Upon being prompted by Lena to reread the article, this is a "re-release" (his words) of my original comment.

Looks to me like the author Benjamin Stecher was too lazy to learn about FUS PTT before he denigrated it. I notice of his criticism wasn't specific. Instead he lumped it in with pseudoscience and then editorialized about pseudoscience.

I sent him a note saying as much.

Drive by journalism.

pdpatient
pdpatient in reply to MBAnderson

Well put, Marc and agree with you that it is not a trivial matter to allow others to decide for you. The final decision is yours and yours alone.

Those of us who’ve had FUS PTT must be very suggestible to get such an convincing improvement in symptoms through a placebo.

jimcaster
jimcaster in reply to Trixiedee

Ha! Brave, yes. Suggestible, absolutely not.

Trixiedee
Trixiedee in reply to jimcaster

I don’t feel like I was brave as I was so convinced by the result and I did so much research that I had no doubts of the outcome. If I had heard one negative story of bad side effects I wouldn’t have risked it. I’d heard too many accounts of DBS going wrong to consider that, even though the person I know with most similar symptoms to me had it and was happy with the results. It took more courage to live with violent dyskinesia and extreme off times as well as being unable to walk. My quality of life was so low I considered ending my life many times but couldn’t for the sake of my children.

PTT has great prospects via FUS. The actual biggest obstacle is that it is not available as an elective first or second choice, at least in Sonimodul. Nothing wrong with the clinical phenomenon, just how to get at it and get it propagated. Thinking it is comparable to some suggestibility or placebo is simply immature, untrained thinking, which is to say, it is not thinking at all. But people will have their sour grapes.

Trixiedee
Trixiedee in reply to MarionP

What do you mean by ‘elected first or second choice’?

MarionP
MarionP in reply to Trixiedee

Oh well right now the swiss one has to be unable to benefit from medications...treatment resistant or treatment non-responsive, per Sonimodul's online literature, so just going by that .

In US of course there may be a some private insurance problems to clear unless people have their own money to pay cash for the whole thing. Don't know if Medicare approves or not...don't know if each state medicaid will approve or not.

Trixiedee
Trixiedee in reply to MarionP

If you respond well to medication then why would you want to undergo brain surgery? I wouldn’t have considered it years ago. Although my dystonia never responded to medication so maybe I would have been eligible years ago. I couldn’t walk easily for 20 years.

Farooqji
Farooqji in reply to Trixiedee

Claims of stopping the progression makes it attractive even if the Medication works

Trixiedee
Trixiedee in reply to Farooqji

Yes, that is a good point!

MarionP
MarionP in reply to Trixiedee

"I couldn’t walk easily for 20 years." Exactly. I've had over 10 and not getting particularly better. But my meds work still, somewhat. I should go another 10 years until they quit completely as my disease gradually progresses? Why? I don't think so.

And even at that, many do not "respond well." And the disease is one of progression, as well as deteriorating response to medication.

Next: I did NOT say "respond well." You changed what I said over to "respond well." I said something distinctly different. When you paraphrase someone, it's an unwarranted presumption. There is no "just because" diminishing re-phrasing/substitution warranted. What I said is right there in print, you don't have to change it round and risk taking out an important part of the point.

Next, there is a great distance between marginal response and no response, and a lot of suffering of people falls into that very big crack. I don't know anyone who would want to go through 10-20 years of something that could be stopped and prevented before that long. Some don't have such long served tolerance, some can't live the life they need, and some non-Calvinists, few as they might be, just don't think they deserve the punishment.

Finally, even with insurance, the co-pay is very high because 20% or more, say 50% or a lifetime payout cap, depending on the insurance carrier and who their particular investors are, can make it unavailable without some insurance companies willing to call it "medical necessity," usually meaning a euphemism for resisting, stalling, fighting and exhausting by the payor, regardless of patient suffering or how long it goes, of all other alternatives that are either or less expense, or lower risk (another form of expense when insuring a large group of consumers) until the patient's head is already half cut off and dangling on a string.

Trixiedee
Trixiedee in reply to MarionP

I think I would have been eligible years ago in retrospect, purely based on my walking issues. Also I developed dyskinesia in the first year of taking medication. You don’t have to be completely unresponsive to medication. Weirdly when I was being assessed in Switzerland I wasn’t badly ‘off’ even when not on medication although later in the day I was, when I had left the clinic.

MarionP
MarionP in reply to Trixiedee

Well that's good at least.

So who paid? Some of my heart work cost $450,000, with $100,000 out of pocket to me. Though FUS is not invasive, much cheaper of course in that respect, but the cost to develop and qualify the first practitioners is low-volume, early-exploratory, consequently high unit cost to develop, produce, and recoup the initial investments in the field before volume and accounting provision allows for unit costs to fall as the procedure spreads. Someone has to pay for it, these very specialized doctors, their equipment, and costs of developing something safe and effective do not grow on trees.

Trixiedee
Trixiedee in reply to MarionP

My mother paid. I was lucky to have a relative with the money. I wish this was accessible in other countries. In the UK where I live DBS is free but I didn’t feel like it was something I wanted to try as I’d heard of people who had bad experiences. Also I fully trusted Dr Jeanmonod with my brain after hearing my friend Michelle talk about him. She was the first person I knew who had FUS PTT over 3 years ago and as soon as she told me about it I decided that at some point I would go for it. At the time it was hard to find other people who had been to Sonimodul so I used this forum to find people and set up a WhatsApp group. Now we have a little community of people who have been treated there thanks to this forum and Lena’s efforts to set up a Facebook group. The WhatsApp group didn’t work as new members can’t see past posts. Anyway for me it was almost a life or death decision and I would have found the money somehow. Michelle crowdfunded hers.

MarionP
MarionP in reply to Trixiedee

So you see the point I was making, in fact you are a textbook example in several respects.

Trixiedee
Trixiedee in reply to MarionP

Yes I do but DBS is more expensive but also more profitable as DBS companies have a customer for life.

MarionP
MarionP in reply to Trixiedee

For life? Didn't know that.

Trixiedee
Trixiedee in reply to MarionP

Yes because they will need new batteries.

MBAnderson
MBAnderson in reply to Trixiedee

I think, also, there needs to be periodically re-evaluations concerning the settings.

MBAnderson
MBAnderson in reply to Trixiedee

I read just yesterday (on a government website, perhaps Medicare) that DBS, over the course of 5 years, cost on average $186,000+.

Parkie-
Parkie- in reply to MarionP

"these very specialized doctors, their equipment, and costs of developing something safe and effective do not grow on trees"

Just want to mention that Sonimodul uses equipment outside it's clinic. For example, the assesment scan and MRI, as well as the surgery itself (and overnight stay), are done in other nearby clinics. The electroencephalogram and neuro exams are made in the Sonimodul clinic/office.

I think it's important to mention this for those trying to inform/spread FUS PTT for exemple to their mds neurologists, making it much more apealing/feasible, investment wise.

Parkie-
Parkie- in reply to Trixiedee

I just re-read this and though I'd share :

From Jan 2020 Dr J paper:

Selection criteria for MRgFUS PTT included (1) idiopathic PD (diagnosed by neurologists), (2) chronic disease with at least 1 year of therapy resistance, characterized by (a) insufficient efficacy of L-Dopa dosed up to at least 600 mg L-Dopa equivalents per day, with symptom control during maximum 50% of the day, (b) gastro-intestinal or other side-effects, (c) fluctuations (on-off phenomenon), and (d) on-medication dyskinesias (choreoathetosis), (3) intensity of symptoms (intensity of tremor at rest and/or hypobradykinesia of 3/4 or more), (4) strongly diminished quality of life, and (5) Montreal Cognitive Assessment (MoCA) test in the norm or reduced but not below 20/30. Three subtypes of idiopathic PD were considered (55): the tremor dominant (TD), the akineto-rigid (AR) and the mixed form (MX). Asymmetry of symptoms was not a selection criterion. No prefixed age limit was set.

pdpatient
pdpatient in reply to Trixiedee

Trixiedee, one might otherwise respond to meds but then again find it impossible to get past the side effects. The option should be available for all PwP's.

Trixiedee
Trixiedee in reply to pdpatient

Having side effects to meds makes you eligible

pdpatient
pdpatient in reply to Trixiedee

Thanks for the clarification.

MBAnderson
MBAnderson in reply to MarionP

Marion, are you contemplating this for yourself?

MarionP
MarionP in reply to MBAnderson

Not just yet. But not far off. Have some people whose interests i must look out for before I can think solely of myself, right now anything I do carries some risk for others.

MBAnderson
MBAnderson in reply to MarionP

Sounds like within a few years. If so, I believe they are now scheduling new procedures in October, so at some point, you might expect a 12 month and possibly longer waiting list. More important many of us, myself included, are tempted to decide whether not we qualify. I feel that would be a mistake. I feel people should apply and let them decide.

MarionP
MarionP in reply to MBAnderson

Absolutely, no reason to jump the gun and take oneself out of the picture without actually being told "no."

Is the author a PwP or diagnosed with some other neurological condition? I don't mean to sound pessimistic, but in PwP's misfortune, they are fortunate that they don't have ALS, PSP, and some other neurological conditions.

I don't believe the amazing results of FUS PTT are placebo effect.

Farooqji
Farooqji in reply to Despe

The author is PWP patient advocate

MBAnderson
MBAnderson in reply to Farooqji

Who is the author? I couldn't find his name on the article?

lenamm
lenamm in reply to MBAnderson

Ben Stecher

MBAnderson
MBAnderson in reply to lenamm

Thank you. I found it.

And thank you for your comment describing the article as "horrible." Your description is far more accurate than mine. After Dr. Julian Lo provided him all the information, he "re-released" it which is a weak admission that he got it wrong and doesn't have the character or integrity to use the word "correction" and apologize.

It was drive-by journalism. It is not possible to fully understand the procedure and inadvertently lump it in with pseudoscience. He did that to sell papers. It's called sensationalism.

I'm going to my comment above and "re-release" it.

jimcaster
jimcaster in reply to MBAnderson

I think Ben is a PwP and is actually a good advocate for us. In this case, though, he clearly jumped the gun. In my opinion, we are so conditioned to believe this is an incurable, progressive disease related to dopinergic neurons and/or alpha synuclein that we often fail to accept anything which doesn't fit that narrative. I hope Ben takes a deeper look. If he does, I'm confident he'll share our enthusiasm.

MBAnderson
MBAnderson in reply to jimcaster

Good.

Trixiedee
Trixiedee in reply to Despe

He’s rewritten the article

GioCas
GioCas in reply to Trixiedee

A more extensive and detailed modification of the article itself seems to me. LOL

Here is some history of neurosurgery and the use of FUS on various parts of the brain as applied in this area.

Nothing "pseudoscienze" it seems to me.

Studying means observing, understanding and applying up to a result that is what counts.

So you never study enough and you can do better !

Unless it is a work of art. :-)

parkinson.it/varie/ultrasuo...

Henri Matisse "Icaro", the work of Art are two ...

finestresuartecinemaemusica...

delboy381
delboy381 in reply to GioCas

Very educational article.Thank you, Gio.

Here is my answer i left on the original article:

I have wrote the initial text, and wrote with the intention of call the attention for this new tecnique. (Sorry about my english, i'm not a native speaker) Jump on to this decision was no light and not easy to make. And only could do it because i had finantial help. After 13 years of diagnostic, where i tried everything, pills, alternative medicine, thc, cbd, HDT (high dose thiamine) Vitamins, exercise (almost runned a marathon with 10 years of PD), learned to eat well, i have made my search and my choices acording with it was avaliable right now, as after 13 years of fight, i knew my situation would degradate fast, and had to make an option. My neuro pushed me into DBS, but with 47 years, i knew i didn't wanted to be dependent on an electronic device to move myself for the rest of my life. I deal with electronic devices, and they failllure, a lot...And i have seen to many stories if bad DBS results. And this are not all roses, it has side effects, althoug the benefits still are much larger. And doctors said the brain needs to reballance, and that needs time. only a week went trough. My main simptoms on my treated side really have gone. No more tremor, no dyscnesia at all, no distonia on foot, no rigidity, but... it seems that my brain doesn't know well the limits of my body, my fine dexitricity is strange ( i have to look to understand what i'm doing. Hopping this all vanishes with time (Drs. told me 3 months at least) and i still suffle walk (especially with my untreated side, unless i'm doing fast walk, and i am a little more stoppet overall. Some other minor but important changes... urinary urgency has stopped, a bit of return of smell sense and improved sexual drive (sex and parkinson, we always know how it starts but we never know how it ends, right). I have 3 children and i need to be here for them. this was clearly my best option available at this time. Fell free to contact-me and i will put you on a video call so you can check for your self. Cheers

delboy381
delboy381 in reply to Markbit

You don't have to justify yourself to anyone, Mark! Who wants to believe, let him believe, who doesn't let him believe what he wants. You, Lena Trixi MB, selflessly share your experience, I can freely say with the revolutionary technology that will change the course of life for many and bring it back. Take care and thank you. Enjoy the new period of your life.

Markbit
Markbit in reply to delboy381

Not justifiing, just did not liked the way my text was treated 🤔

delboy381
delboy381 in reply to Markbit

I understand you completely. I would probably react the same way.

Trixiedee
Trixiedee in reply to Markbit

Marco, did he ask your permission to use your post?

lenamm
lenamm in reply to Trixiedee

I wondered the same thing as it was taken from a closed group.

Markbit
Markbit in reply to Trixiedee

Of course not

Trixiedee
Trixiedee in reply to Markbit

I’m really shocked that he took a post from a private group to write such a dismissive article. That is NOT OK!

Parkie-
Parkie- in reply to Trixiedee

I'm shocked too. I'm wondering if the author took Marco's text himself , which would imply he is a HU member, or if another HU member supplied him the text...

Trixiedee
Trixiedee in reply to Parkie-

No, the text was taken from the FUS Facebook group which is a private group. He has apologised. But still has his really negative article up.

Despe
Despe in reply to Markbit

Find out what the penalty is, Mark, publishing your post without your written approval. Don't let it go unanswered.

lenamm
lenamm in reply to Despe

Mark's words have been taken out of the article and Ben has apologizes for using them without permission. Hopefully something like this will not happen again.

Despe
Despe in reply to lenamm

Thanks, Lena.

Nice of Ben to apologize, but that is not the point. He instilled doubt in PwP who consider FUS, questioning its results.

lenamm
lenamm in reply to Despe

I still think the article is horrible but I can't change that.

GioCas
GioCas in reply to lenamm

Ben Who?

Trixiedee
Trixiedee in reply to GioCas

Benjamin Stecher

ParlePark
ParlePark in reply to Trixiedee

Thank you!

GioCas
GioCas in reply to Trixiedee

Benjamin who ?😊

lenamm
lenamm in reply to GioCas

Stecher

GioCas
GioCas in reply to lenamm

I never heard of him ... 🤷‍♂️😊

ParlePark
ParlePark in reply to GioCas

I believe this is the article ... tmrwedition.com/2021/01/16/...

GioCas
GioCas in reply to ParlePark

Ah yes, ParlePark how about this by the same author on the pandemic in China with lots of quotes from XI , Mao and the great CCP that sends aid to Italy. (IMO They came did an almost tourist tour for public relations purposes and they are gone, what tenderness, I've seen them, I live in Lombardy, Milan Italy ). Thinking back it makes me want to cry.😩😭

tmrwedition.com/2020/03/23/...

ParlePark
ParlePark in reply to GioCas

I’m sure they did. Pathetic ...

ParlePark
ParlePark in reply to GioCas

Whose Ben?

lenamm
lenamm in reply to ParlePark

The man who wrote the article

ParlePark
ParlePark in reply to lenamm

Thanks

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