The 2nd FUS PTT procedure and me. - Cure Parkinson's

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The 2nd FUS PTT procedure and me.

MBAnderson profile image
MBAnderson

Greetings all. It is good to be home.

We scheduled our trip to allow for 11 days of quarantine upon arrival in Solothurn, but now such quarantine is not required. We left Solothurn the Sunday after the Friday clinic schedule and didn’t fly home from Zürich until Thursday, which made the whole trip too long -- to be away from our dog, Margaret, with 16 days in Solothurn ($1171) and 4 days in Zürich ($1064.)

Any the report now of the results of the 2nd PTT procedure is premature because, as they (Dr. J (who, by the way, is phasing into retirement,) and Dr. Gallay) explained, which I believe to be true, it will take several months for my brain to figure out exactly how to compensate for two neuronal pathways being blocked. My one month post-op report will be more valuable than this one and more valuable still will be the 3 month report.

That said, my observations thus far is that the 1st procedure feels like it had more dramatic effect more broadly, my right hand still tremors intermittently, but 80% less and can be stopped at will. My gait initiation is improved by about 50%, as has turning over in bed and the right side of my body is 90% free of rigidity and stiffness.

Constipation has so far been unaffected, (boo-hoo,) my voice is somewhat softer, my speech slightly impaired, but undetectable to others, and I have slightly worse balance which I had postop the 1st time. Then, I was leaning forward and this time am leaning forward and/or to the right. After the 1st procedure, it took about 2 weeks for the balance and the other issues to fade and I expect the same this time.

After they took the bracket off my head, it was quite painful, which did not happen after the 1st procedure. Enough so that I needed an I V drip some kind of pain blocker, which I got after I was wheeled over to the hospital.

I feel funny, though, like I've used up all prospective interventions and am on my own now. Oh well.

Marc

PS Was great fun to see you again Jan Vandromme.

78 Replies

Welcome home Marc. Glad it went well.

Welcome back. Good to know you’re okay.

I hope things continue to improve as time goes by.

So glad to hear that you are back home safe and sound. Fingers crossed for continued improvement

Hope things settle down in the shape of overall improvement in the coming days

Cool, thanks for the detailed information.

Good to have you back. Looking forward to hearing more. Take it easy for a while

Glad it went well and that you are back! Best wishes for sustained improvement.

Welcome back! Must be nice to be home. Thanks for letting us all know how you are...

Thanks for taking the time to share. Good info.👍

Glad to hear all about your procedure. Hope you continue to improve as time goes on. Definitely take it easy you ll need plenty of rest, glad you are back home.

Its great hearing from you. I am happy to hear there were so many improvements even if not perfect. You are a hero for demonstrating improvements are possible. Look forward to the zoom!

Glad to hear you’re back home safe and sound Marc.Thanks for taking the time to let us all know how it went. You are so brave. 🤞for continued improvement.

Great news Marc!

Hi Marc,

It is very good to hear that the procedure went well and you are further improved! I am glad you are home safe and sound!I'm looking forward to your updates as I was last time.

This may seem like an odd question, but do you think you can put into a percentage that would give an idea how close you feel to being 100% of normal or 100% of no PD? Thank you!

Art

MBAnderson profile image
MBAnderson in reply to chartist

Right now, I feel about 60% to 65% back to normal. I believe over the next few months I will get 70% to 80% back to normal. (Being rid of the tremor in both hands is a big deal, by itself.)

I consider this the equivalent of taking me back 5 or 6 years.

I will, of course, be open to assessing more -- such as 80% to 90%, but I wonder if that is not too much to ask/expect.

chartist profile image
chartist in reply to MBAnderson

Thank you for that assessment, Marc. It sounds very good to me. You must have said it at some point, but how many years are you into PD?

Art

MBAnderson profile image
MBAnderson in reply to chartist

Tremor 1st appeared in 09, was misdiagnosed as essential tremor in 2010, and correctly diagnosed in July 2011.

Glad you are back. Sounds like in a few months you may be able to get along ok without further interventions??

Good to hear from you and hope all continues to go so well! 🐕

Prayers up for you Marc, glad you’re home and thanks for sharing. John

You truly are a brave trailblazer, for all of us!

Please keep us updated on your progress.

Signed,

Your fan club

Thank you for the update Marc. Wishing you a speedy recovery from the procedure and the long journeys.

Thank you so much for the good news and for keeping us informed, Marc.

What about some physiotherapy now?

Did Pr J and Dr G said something about that?

Take care

MBAnderson profile image
MBAnderson in reply to Xenos

I told the 2 doctors I planned to work up to a robust exercise routine and they thought that was the best thing I could do.

Regarding the feeling of having used up all prospective interventions, if this procedure enables you to exercise more vigorously that is another intervention that will be impactful. Stating the obvious I guess but I understand the thought of “well, that’s it” is hard. I’m elated to hear that you are generally doing well.

And, personalized cell therapy is coming. We shouldn’t hold our breath for it but it is coming.

You are always such a positive voice, cclemonade.

Skydome profile image
Skydome in reply to MBAnderson

Not that you are likely to need it🤞but doesn’t DBS still remain an option even after PTT?

MBAnderson profile image
MBAnderson in reply to Skydome

Yes, I believe it does.

Welcome back Marc . It’s nice to hear that everything went well.

Welcome home! I know this was the big thing and now it’s over, but you’ll see improvement and hopefully maybe they’ll be other things down the road we can do to help ourselves. Maybe they’ll have some breakthrough or some thing that more than mice would appreciate.😀Either way welcome home and good for you for having that done.

Marc,Welcome back. Nice to hear from you.

Good to see your message Marc. You sound in good spirits and we miss you and your kind words. Hoping to hear your voice soon. Be safe and we’ll. Nico

Good to have you back, Marc! Best wishes for a speedy, total recovery and 100% improvements. Please keep us posted.

Is there a replacement for Dr. J?

MBAnderson profile image
MBAnderson in reply to Despe

Dr. Gallay will take over the business, I assume. I didn't ask, but I suspect he did the procedure with Dr. J in attendance supervising.

Welcome home Marc, prayers for continued healing.

Glad you are safe and sound. I look forward to your continued good reports and progress. Bravo to you Marc!

You are one of our pioneers and your experience is helpful in shaping future treatments. Thanks and I wish you good continued progress

Glad you are home safe and sound. Looking forward to hearing about your improvements over the next weeks and months. Maureen

Best wishes for speedy improvements !

Welcome back home, Marc. Pleased to hear that you went through another successful procedure and I am sure that with your "matter of fact" positive attitude, you will be up and running in no time as a "fresh" person.

Here's to good beginnings 🍸🍹👍👏

RKM

Thanks for your update Mark. I'm considering to move forward to the second procedure also, as my untreated side is now my rebel side... My tremors are more noticeable on that side now. I think they were there before, but as now my treated side has become almost tremor free, the tremor on my right arm and leg is much more noticeable... and annoying. Hope that everything goes well with you and according with your expectations. Happy that you made a nice trip home. Did you stay in Alain apartment? Did you like it?

MBAnderson profile image
MBAnderson in reply to Markbit

We did stay in Alain's apartment and it worked out fine. Thank you for the referral.

MBAnderson profile image
MBAnderson in reply to Markbit

Marco, It seems like you had the 1st procedure about 3 months ago?

Markbit profile image
Markbit in reply to MBAnderson

Indeed Marc. I'm having a phone consultation with Prof. J. tomorrow afternoon (almost 4 months now) and after that i will write an update on my situation.

Welcome home. Lets hope after some rest and begin to feel re-juvenated. 🙏

Thank you so much for all the well wishes.

Welcome back Marc! Glad you are back home to recuperate with your doggy. Best wishes on an outstanding recovery.

Best wishes on a fabulous recovery. I bet your doggy was happy to see you.

Welcome home, Marc! You are an inspiration to all of us.

Congratulations, Marc. You know there's only one other word I can use... Blimey! 😆

I apologize if my question is a duplicate one but are you still taking PD meds. If so, how do the dosages compare between before and after? Thank you. Welcome back!

MBAnderson profile image
MBAnderson in reply to b-bobble

I was not taking any before the procedure because I am most often unresponsive to L-dopa, but the doctor asked me to take one, 25/100 Sinemets each morning post-op.

b-bobble profile image
b-bobble in reply to b-bobble

Thank you. Do you mean by "unresponsive to L-dopa" you had neither a positive nor negative response? And when you took the Sinemet post-op did you feel any difference?

MBAnderson profile image
MBAnderson in reply to b-bobble

Yes, I meant I generally have no response to L-dopa and when I take one Sinemet/day, I feel nothing.

That’s just like my Dad, no response to L-dopa. So, knowing that, why would the doctors want you to take any post op? If it did nothing before it’s going to do nothing afterwards. My Dads neuro did the same thing before and post op.

Hope you see better and better results as time goes on! Early days as they say. Rest, settle in at home and hope to see you soon.

You’re amazing! Now you can look forward to all the wonderful new changes!

You are truly a courageous trailblazer. In being so you give hope to the many PWPs who can look to FUS as a possible solution if symptoms become unbearable. Best wishes for a steady recovery, helped I'm sure with the presence of your dog who will encourage you to take her for walks!

Thank you for sharing, Marc. Wishing you all the best and ease with healing. My brother will be getting his second side done the end of June, and this information is very helpful.

Who is your brother?

Glenn. He’s not on this forum.

Cons10s profile image
Cons10s in reply to Lisagreent

Lisa, can you share your observation of your brothers procedure.

Lisagreent profile image
Lisagreent in reply to Cons10s

Glenn’s treated side is 85-90% improved, but untreated side got much worse, very similar to other’s description on this forum. He is medication resistant, so no relief from Sinemet.

Trixiedee profile image
Trixiedee in reply to Lisagreent

Does Glenn have a tremor? My untreated side is much better after surgery but I never had a tremor.

Lisagreent profile image
Lisagreent in reply to Trixiedee

Yes, tremor/ pain on treated side was worse initially, and now tremor/ pain on untreated got much worse. After first intervention, treated side is tremor free unless high stress, then it comes back a bit.

Welcome back, Marc. So glad you’re doing well - JG

Wishing you continued improvement from the procedure

Marc thanks so much for sharing your experiences and I wish and pray for a good continued recovery. Are you at liberty to say what this procedure costs in Sweden? I know in the UK it's £23,000 if one pays for it on private care. Totally understand if you don't wish to say.

We were in Solothurn, Switzerland and it cost Fr.35,000 which, with the exchange rate, was $38,644 USD. Are you sure it is the same exact procedure in the UK?

No, I'm not sure it's exactly the same procedure, although it is focused ultrasound to stop tremor. I can share that the procedure done in England (Imperial in London) is accepted on the NHS for essential tremor but I'm not sure the NHS accepts it for Parkinson's. Thank you for the information you've shared.

lenamm profile image
lenamm in reply to SylvesterB

Not the same as PTT is only available in switzerland

Marc, thanks for taking the time to provide such a balanced assessment. I will look forward to your future reports.

Marc, Thank you for sharing. Very happy for you, hope you continue to improve.

Hi Marc, Great to hear that you've had a safe trip/procedure on your way to recovery - hoping to hear great future updates with unexpectedly positive results!

On another note - have you (or anyone else) heard from Parkie- (Nicole) since her FUS PTT procedure on Feb 10th?

I have not heard from her since her procedure 3 months ago experiencing a balance issue. I've been quite worried about her and it seems she has been off HU ever since.

No, sorry, I don't know how she is doing.

rescuema profile image
rescuema in reply to MBAnderson

That's unfortunate. I was hoping she would've contacted you during her recovery or you may have heard something through Dr. J. Let's pray she's doing well and we'll hear back sometime in the future. 🙏

Amazing - so pleased for you (and potentially for many of us) keep us informed about further improvements

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