This is brought to us by Lena from her FUS for Parkinson's Facebook page
Several related links below the study.
From Japan June 2019
Pallidothalamic Tractotomy (Forel's ... - Cure Parkinson's
Pallidothalamic Tractotomy (Forel's Field H1-tomy) for Dystonia: Preliminary Results
Written by
MBAnderson
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40 Replies
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Thanks, Marc! Very encouraging! The additional links to other studies are encouraging, too.
Marc. I don’t need FUS yet, but if I did in the future, family members who might help out financially will ask this question understandably and I’m not sure of the answer: if it’s such an effective procedure why aren’t more centres offering it? Why is DBS so much more dominant?
Hopefully you can help me out here. Thanks 🙏
Pretty new yet. Takes time to spread. Just at the very beginning of the curve. For the exact same reasons and questions your financially assisting funders must ask. Same as, say, self-driving lorries or a trip to the moon. Or the introduction of a counter to an invasive species to a new continent. Or a new alternative to glyphosate that does as well for weed control on crops as glyphosate does. Or, in this era of new 5G telecommunication, the development and introduction of 6G. All the same. This is serious complex brain surgery. Took 10-15 years to develop. Big bill and time and technology and skill to develop, to invest in, to find the many millions of somebody's money to commit to against competing uses for that money. Ain't cheap. Ain't fast. Ain't nobody knows how to do it. Ain't no investment return known until all that's raised and spent. Ain't known to be helpful and not butcher you yet.
First two minutes of a ninety minute football game, no one has even had a chance to get their hot dogs and beer and urinate on the other club's supporters yet.
That's why.
Thanks Marion 👍
Hi jeeves,
I agree with Marion and Lena. $$ Plus the inertia of the status quo.
The problem with their having a placebo control group, which would export the procedure faster, is the cost would be exactly the same to do sham procedure and who's going to pay for that?
Marc
Cheers Marc 😊
There is also a ton of money in DBS technology. The other answer is PTT has only been done nine years so even though it is highly likely it helps longer than that it can not be proven yet. There are also certain types of PD (distal symptoms, non or low medication responses) that PTT works best for.I hope that in the future both are offered.
Absolutely correct, there is competitive pressure to extract as much as possible return on investment in what I often call "the installed base" of current or conventional technology. This is often a feature in general that causes resistance and widespread heavy foot dragging for any extremely well capitalized and widespread industry form, such as fossil fuels, internal combustion engines, etc.
I recently found this one which looks at about 50 patients who have received PTT on one side with what I, as a layman, perceive to be very encouraging results. Unless I really don't understand them.
ncbi.nlm.nih.gov/pmc/articl...
The bilateral study is in peer review and coming out soon. Even better results 
I cannot wait.
You don't have a spare £60,000 you can lend me till next century do you?
How do we get the oft excellent NHS to wake up to the idea the DBS isn't the only answer, and not always the best?
Financially I am not in a position to consider it, as I am 6 years since diagnosis and declining fast, in my forties with children, mortgage etc. and know I will be forced to stop work early with insufficient pension and nowhere near enough funds and still with a massive mortgage and unbearable pressure on my wife to look after me and earn enough to take care of the bills.
The irony is that this sounds like this could answer much of that dilemma, but I'm up Schitt's Creek and would need to hand over my only paddle in the hope that mystery box contains an on-board motor and not a spoon to try and eat my way out.
I've known a couple people in the US that crowd funded it. Our health care is even worse than yours so even DBS can lead to paying thousands out of pocket. For me - just getting side one done got me from housebound to back to work so it was completely worth the $35,000 to be able to continue earning a living. The US safety nets are horrid. Luckily in my case I had just been through a divorce and as part of that we had to sell our house. My plan was to use what I got from that to buy another but instead it went to brain surgery one and two (scheduled for Dec 9th). It would have been way harder to convince my ex to sell the house to pay for brain surgery. I know crowd funding for medical expenses is not very common out of the US (unfortunately it is very common here) but it might be an option depending on your network of support.
"Luckily in my case I had just been through a divorce" - it is good that you could take the positives!
That is the drawback (one of the few) of 'socialist' medicine, that the thought of putting yourself in debt to fund treatment, or even worse, ask for money from others, is alien to us in the UK and goes against the grain, especially for an 'experimental' treatment unless it came with a money back guarantee.
Like your husband, my wife, who loves me very much (and at times, understandably, hates me in equal measure) would never jeopardise our school age children's security on the off chance of success, no matter how likely. Plus, my concern of going your route is the speed at which my wife might agree to the divorce 
And could we fund raise £50-60,000 I can think of many a child cancer charity or children's hospice that could spend the money on far more deserving people, so would feel guilty to accept it in a way that I wouldn't feel about spending my own money if I had it available. I'm not good accepting charity no matter how much I might benefit from it or how pig headed or stupid that might be.
I am still open minded though as I still have some time, but I was encouraged that it isn't just tremor PTT treats as for me it's rigidity, bradykinesia and resulting pain that are my major physical conditions whilst anxiety is my major non motor symptom which wouldn't directly improve but I am so physically tense all the time that getting anxious makes it so much worse and can last days before I can relax a bit. Which really makes me anxious about getting anxious! Oh the joys of Parkinson's.
in reply to lenamm
Hi Lenamm. Where did you have FUS performed?
lenamm in reply to
I had PTT at Sonimodul in Switzerland which i s the only place it is offered
in reply to lenamm
They seem to be offering it at University of Pennsylvania Medicine and also Rush Presbyterian in Chicago. And Sunnybrook Research Institute in Toronto.
lenamm in reply to
Not PTT - from the facebook group
Focused ultrasound is a tool - it is a way of directing focused ultrasound with MRI visualization. It can be used for many surgeries all with different outcomes. To talk about FUS without naming the surgery tells nothing, it is like saying a doctor used a scalpel without naming the surgery.
Focused ultrasound is a way to do surgery. You are permenantly destroying a part of the brain. It is something to consider vs DBS. It is not done with early disease. It is brain surgery we are talking about. No incision is needed and side effects are rare but there is risk.
There are three surgeries for Parkinson's. PTT (pallidothalamic tractotomy) 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).A trial has just been announced for PTT in the US. Thalmotomy in the US and other countries is just for tremor dominant PD and is FDA approved and can only be done on one side. Pallidiotomy is US is for dyskinesia and is in trials in the US, Canada, maybe UK but seems to treat different symptoms as well, also only one side can be done. I have less info on the surgeries besides PTT since I did not go through them (if you did and have something to add let me know). At this point only medication resistant folks qualify for FUS surgeries (i.e. meds no longer work or side effects very severe). So if you have never been on meds this is not an option.
Links
fusfoundation.org/.../neur....
in reply to lenamm
Thank you Lenamm. I understand much better now. I love the example of FUS=scalpel. I also didn’t appreciate the different procedures, I.e., PTT vs Thalmotomy vs Pallidotomy. Seems like PTT FUS done by Sonimodal in Switzerland is the best option when the time comes.
lenamm in reply to
The people I have talked to who got the other surgeries had minimal or short relief
Would be extremely interested in those bilateral results, where can one go to follow the people doing it? ( & Also to read what they have done or written already to get the bacground)
I would follow Sonimodul on facebook as their study is the one in peer review. The Japanese are also doing a bilateral trial - not sure when it's over. Another good resource is fusfoundation.org/diseases-... . Sonimodul also has a lot of info on their PD page sonimodul.ch/parkinson/
"All patients had undergone unilateral pallidotomy before contralateral pallidothalamic tractotomy. The mean interval between the previous surgery (pallidotomy) and pallidothalamic tractotomy was 9.5 ± 3.1 months."
That’s quite rapid.
I think drJ wants to wait one year in between the two surgery.
Yes Dr. J wants a full year. I believe the study is Japan which is in the works is doing nine months.
How is the waiting going in Switzerland? I know the Covid19 is pretty bad right now. Can you at least go out and see a little scenery?
We are being careful and mostly just going out a bit on the walking trails and in the allotment gardens here in Solothurn. Most of the museums, in door attractions are closed. The restaurants are open here but the only time we ate in one we sat outside. Even though numbers here are higher than the US it feels safer. There isn't a lock door where we are in Solothurn, just an order to wear masks inside. We have a full two bedroom apartment so just trying to appreciate being someone peaceful and calm.
When we were there in Sept. we also ate in restaurants only on terrasse. It was warm only for two days, so we cooked all other meals at airbnb. If you have a car, Switzerland has some impressive scenery to offer.
Will you make it go away by the 3rd week of April?
I am making and uploading the 2nd video today, so now I enter the high anxiety phase of will he agree to do the other side.
I hope Marc!
He just agreed yesterday, but didn't confirm a date. We're thinking the 3rd week of April -- pending Covid circumstances.
Hi Lena!
They sent me an invitation for the evaluation exam for Dec 14-15; did they required you to stay in quarantine after arrival? I do not know if it is better to fly from USA or Canada. But I know Canada will ask me to quarantine when I'll return which I can avoid by just driving back in USA.
Thank you.
Right now there is no quarantine for US or Canadians but you need embassy passes to get in, so you need to contact the Swiss embassy in your country (Canada?). The embassy only recommends traveling directly to Switzerland If you travel through other countries you may not be let in or have to quarantine there. The quarantine could go back into effect with no notice at anytime though. They will quarantine anyone from a country with worse COVID #s. If you are Canadian you are probably safe from quarantine because your #s are low unless they suddenly go up.
Dr J said politely in an interview, there is much $profit being made from DBS,
Why would they endorse a much simpler procedure that requires no equipment purchase? The $profit margin just isn't there. Pharma doesn't profit.
Marc,
Was the bi lateral aspect of going to Switzerland your main reason for doing the FUS PTT?
Von
It is/was certainly a major part of the decision.
Just to put it back in the newsfeed:
pubmed.ncbi.nlm.nih.gov/312...
Apparently some missed it.
See also: pubmed.ncbi.nlm.nih.gov/303...
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