The Unified Parkinson's Disease Rating Scale (UPDRS) off-medication postoperative score was compared to the baseline on-medication score and revealed percentage reductions of the mean of 84% for tremor, 70% for rigidity, and 73% for distal hypobradykinesia, all values given for the treated side. Axial items (for voice, trunk and gait) were not significantly improved. PTT achieved 100% suppression of on-medication dyskinesias as well as reduction in pain (p < 0.001), dystonia (p < 0.001) and REM sleep disorders (p < 0.01). Reduction of the mean L-Dopa intake was 55%. Patients reported an 88% mean tremor relief and 82% mean global symptom relief on the operated side and 69% mean global symptom improvement for the whole body. There was no significant change of cognitive functions. The small group of bilateral PTTs at 1 year follow-up shows similar results as compared to unilateral PTTs but does not allow to draw firm conclusions at this point."
"Discussion:
Patients reported an 88% mean (95% median) tremor, 82% mean (90% median) global symptom relief on the operated side and 69% mean (80% median) global symptom relief for the whole body at 1 year. These results compare well with our scale improvement ratings: at 1 year the off-medication state was compared with the baseline on-medication state and revealed a percentage reduction of the mean of 84% for tremor, 70% for rigidity, and 73% for peripheral hypobradykinesia."
Just spoke with Prof. Daniel last week. He saw my videos and he told me that he believes that i am eligible for the treatment. Waiting for a date to do the pre-op examination.
DBS appears to have a greater risk of side effects, works primarily just for tremors, is more invasive, and has a higher failure rate.
Compared to deep brain stimulation, focused ultrasound is a single procedure, and does not require subsequent procedures/visits to replace batteries, repair broken wires, or adjust simulator settings. It also does not involve the collateral damage to healthy tissue or the risk of infections associated with implanting a foreign body.
I don't know a lot about DBS. I assume to reverse it requires taking electrodes out and taking the wires and battery pack out which would be a 2nd surgery.
My understanding is that DBS provides significant relief for several symptoms, but I do not know if it provides as much as this.
I know a lot of people don't give a 2nd thought to invasive brain surgery.
I agree with you, Marc. As we sit here today, this is the most advanced therapy we have. It gives legitimate and immediate hope. I am eager to visit with you next summer after you have successfully completed your treatment. 😊❤👍
By the time you are ready for this, which, at the rate you're going, won't be for another 10 to 15 years, the protocols will be perfected and the results even better -- and they will be doing it at Mayo Clinic ( and several other US locations) and it will be covered by insurance.
I'm hoping by that time stem cell therapy is ready. It sounds like a person's own stem cells from fat or skin is the most promising. In the mean time, to be fully headed, we need to stop the PD progression.
It is still very much symptomatic though, underneath the brain cells are still crashing and only a matter of time before even this treatment gets overwhelmed
I'm happy for the relief and hope that this (will) provide(s) to hundreds of PwP, but i don't want us to give up on a more authentic healing protocol. Which is what tends to happen subconsciously because when people get into a comfort zone, the tendency is to relax and take the foot off the pedal
We know with certainty that DBS is symptomatic and you may be right, but the doctors in Switzerland don't concede that the therapy will eventually be overwhelmed. The procedure is not old enough for anyone to draw a conclusion. Most patients continue to improve for a year after the procedure and some patients have gone 5 years without progression.
Oh, no pd progression for 5 years? that's SUPER EXCELLENT then
In that case it's a slam dunk for FUS in the DBS vs FUS contest, i wonder why people are debating this at all
And why are some people considered not eligible for FUS if they respond to c/l? It's not like for like, it's totally illogical because c/l doesn't halt pd progression
Right on, Grumpy. This is THE most encouraging Parkinson's related news which I have read about since being diagnosed 2 years ago. It may be the first real game changer in decades. Although a variation of it is approved for tremors in the USA, the Swiss have had great success with rigidity, bradykinesia, and other motor symptoms. I hope Marc is correct that it will be readily available in the near future. In the meantime, Marc and Lena McCullough are our resident experts.
Do the Swiss FUS also have great success with tremor dominant pd? I reread Marc's original post and it still wasn't clear to me if the data was referring to USA fus OR Swiss fus
The paper I linked to above, frontiers of neurosurgery, is written by the Swiss team, states explicitly that is for tremor dominant PD ( along with 2 other types of PD) and it's intended to stop the tremor completely. There are several videos on YouTube which shows the patient before and after where the tremor is stopped completely.
DBS is available on the NHS. FUS is £30000 per side in Switzerland. However I still think reading this report and other members experience of FUS that this is most probably worth the money.
They clearly had this paper professionally edited because if you read their website, You can tell from their diction that English is not their 1st language.
PS. If you look outside the left-hand margin of this paper there are 3 editors listed. I just noticed that the one on the bottom Vibhor Krishna is the doctor who did my (sham) Pallidotomy procedure in Columbus Ohio. Small world.
I was diagnosed at 48 years of age in 2008. C/l worked like a charm until it didn’t (brutal dystonia in legs). So I had DBS in 2014 which again worked like a charm until the fall of 2019. I am casting about for some relief as my neurologist offers little more information. Any reason this would appear to be of little use to me? I appreciate thoughts from the HU community.
I may well be wrong about this, but I recall reading that DBS does not preclude FUS, but I would assume you would have to have all the hardware removed. The people on the FUS Foundation website have been good about answering my questions. You could also email the people directly at SoniModul and ask them.
The paper says nearly all were still improving at the one-year point. There are case studies of several people who remain without progression after 5 years, but the procedure is too new to have hard data on that and draw conclusions. The doctors speculate that it may stop progression indefinitely. ( I'll take 5 years and be very happy with it.)
Marc, first off I wish with all my heart that PTT will stop your progression for ever! You have commented that you are not on CL but occasionally. Did you mention this to the surgeon?
Again, GOOD LUCK! My husband may consider it sometime in the future as he was diagnosed in 2018 and doing fairly well.
These are THE most encouraging videos I have seen on this site. I have ZERO respect for anyone who would be critical or harsh. You are a hero, Lena. Congratulations and best wishes always!!!
Lena sharing her experience is the reason why I have an appointement at Sonimodul in May for tests to see if I am a candidate or not for FUS. I now have some hope of eventually getting my life back.
Very helpful indeed! I have an appointement for March 31 in Solothurn for pre-op tests, and your video in their FB page was the trigger that caught my attention and really move my decision on this. Thank you for your sharing. Maybe i will run the marathon one day, if i do so, this community will be a lot guilty of it!
My appointement for the pre-op tests is May 7, for one day, and include a neuro exam, an eeg, a ct and mr scan and an appointement for discussion, for a cost of CHF 2’900.
Just curious, is your preop tests for one day or two days? And is it the same agenda and cost?
I'm still waiting for my agenda, but is for one day also (March 31), so i do not know yet what is included, but Professor Daniel on the phone told me the procedure would have a total cost of 35'000 CHF. The pre-op would cost 1'800 CHF, that would be deducted to the final price, if i go forward for it.
For whatever it is worth, the fees reported here are much less than what they would be in the US. While I was having my pallidotomy done in Columbus, Ohio, they were accidentally sending me all the bills and the bill for the anesthesiologist, who did nothing but stand around, was $8500. (That's $2100 per hour for nothing.) One MRI was $4500.
My best guess for everything, i.e., three or four days of preop, one day for the procedure, one overnight in the hospital, and two days of postop was $100,000.
(When discussing the outrageous cost of healthcare in the US, no one talks about the excessive billing of hospitals.)
Wooow! Thats a different world for me! I could go for a DBS in our NHS here in Portugal, and would probably cost me from nothing to 3000 €. Our NHS covers most of our expenses, once you get filled in the queue. Major problem are the waiting times to be called for the interventions.
Just got my agenda, one day (March 31), starting at 8.30 with a neurological examination, then quantitative EEG examination, CT Scan e discussion in the end, at 14.00.
Confirmation of the costs at 1'800 CHF. Plus flights and hotel, of course.
10 hours to Gatwick, UK, then during a five hour layover, a one hour bus ride to Heathrow, then a two hour flight to Zürich, then a one hour train ride to Solothurn.
May 7 is coming up fast - eh? All the uncertainty must be nerve-racking?
Do I remember correctly that your pre-op evaluation is not scheduled to coincide with the procedure? If so, does that mean the clinic is expecting you to make two trips? That seems unusual.
Do you expect or have you contacted Dr. J to see if he expects to be open May 7? Do you know if Switzerland is blocking incoming flights and if so do they have an end date?
I assume you have your tickets and the airline has not canceled them? That would be a good sign. (Flight insurance may cover pandemics.)
I thought you said you're staying in an Airbnb? Have you got that already and are you on the same side the river as the clinic, i.e., in old town?
No, I haven't heard from the clinic. My original reaction to the rise of covid19 was to not cancel the clinic appointement, hotel or airbnb and show up if my flight is not canceled.
Seeing how bad it is get getting, however heartbreaking it is, I think it would be wiser to stay home for now. The province of Quebec has the same population as the whole Switzerland country. We have 634 cases and 4 deaths and Switzerland has 8000 cases and 66 deaths right now.
Just in case the situation drastically improves between now and May 7, I would prefer not to cancel anything right now. However, payment for tests at the clinic is due within a week. So, not sure what to do. I might pay for the tests and wait til the last minute to cancel my appointement.
The Airbnb we booked is about a 30 min drive from the clinic. We choose it because we only needed to be in the clinic one day out of the whole week and Biel seemed like a nicer touristic area. Where was your's located?
Yes, if Dr J finds I am a candidate for FUS, I will have to make two trips.
I sent in my original request to submit my case in November and instead of being asked to send my medical file and video, I got an email saying Dr J needed a phone appointement for 2 weeks later. That phone appointement lasted less than 5 minutes and he only said to send in my stuff by email without asking me further information on my case...
After he received my stuff, he said he didn’t know if I was a good candidate or not and offered a 2-day testing package for 4000 canadian $. I asked a few questions and instead of replying by email, he set yet another telephone appointement for 2 weeks later that lasted less than 5 minutes where he only said I can't tell if you're illegible or not, you have to come here. I asked if it's because I am non-tremor dominant, if it's because of my fast progression and so on, he would not answer.
So I accepted his offer and Mrs Rossi sent me a package for a one day testing programme instead of 2 days. So I accepted that "as is" because any questions would have given me extra weeks delays...
Wow. Decisions, decisions. I think you got the chronology just right, i.e., I'd wait to the last minute to cancel, but, like you, I also would not put my life at risk which one might do traveling thru the big airports if the spread hasn't started to recede by late April. It'll be a tough judgment call to make at that time. There is no reason you cannot ask him in advance about canceling pending the circumstances at the time you have to make a decision.
I do not envy you your decisions. PTT is perhaps the most important thing in your life, except your life. That makes it tough.
We discussed at length holding up in Solothurn, but decided instead that we would be obsessive/compulsive travelers. We not only wore masks, but we taped the edges of the mask to our skin with medical tape, wore gloves, each had a bag of disinfectant wipes and we went through a bag each every day. We were very mindful and consciously touched NOTHING, yet still wiped off our gloves and facemasks repeatedly. No symptoms yet, knock on wood, and I feel we will be clear if we make it 7 more days. Seriously, nerve-racking though.
I know you will 'error' on the side of safety. You can always reschedule.
As you probably know, you can locate SoniModul on Google Maps. If you did that, We were immediately across the "Wengibruke" bridge at 12 Berntorstrasses (across the street from the Hotel Roter Ochsen all of which which shows up on Google maps) great little 1 Bedroom Pl. for $100 per night, 7 minute walk to the clinic, a dozen restaurants, and a COOP, 10 minutes to the train station. I cut a deal with the landlord whereby if we had to stay there for a month or more she'd give it to us for $50 a night.
I trust Dr. J. I do not believe they would consider keeping any money unless the person showed up and services were rendered. He is a very genuine, authentic down to earth guy who enjoys helping PWPs. I do not go out on a limb by ensuring you can have complete trust in how he sets fees.
I will keep my dystonia free fingers and toes crossed for you. You're a smart cookie.
Marc, you nailed it exactly : "PTT is perhaps the most important thing in your life, except your life"...
The safety measures you and your wife took were about what my husband and I intended to do. I believe you did the best and safest thing possible, so enjoy your reward, you certainly deserve it!
Was your Airbnb shared with other people or did you have the place to yourselves? It was very well located indeed. We might take this one instead (if it's not shared).
I am not the least worried about the clinic keeping the deposit money... I think I'll make the payment just in case things improve with covid19 before my appointement.
The apartment was not shared. At my age, I am not into sharing the bathroom. One bedroom with Wi-Fi, TV, and kitchenette. Five restaurants within 100 feet, 20 restaurants within five minutes.
Hi there Nicole. I indeed postponed my assessement about a week ago. This is getting really bad over here (i live in Portugal) and i decided not to take the risk and have sent an email, witch they answered me that they understood my reasons, and accepted them. They told me to contact them again in the future, once i think it would be safer to fly there. I had already done the payment, and i'm still waiting to see if i ask for a refund or if i left it there until i reschedule.
Anyway, i will stay home for sure for now and wait for better days. I'm managing my symptoms quite well right now and i'll keep it that way. I don't now witch of the stuff i do is working, but is doing great (alfuzosine is my number 1 suspect now).
Hope on things to improve with the covid19, but i think this year will be a lost one.
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