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.
Written by
MBAnderson
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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.
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!
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.
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.
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.
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.
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?
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.
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!
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.
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?
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.
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.
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.
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.
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.
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.
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. 🙏
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PTT - Pallidothalamic Tractotomy
FUS Methods Questions
