I have decided to proceed with the focused ultrasound Pallidothalamic Tractotomy procedure and have now arranged to visit Sonimodul in Switzerland in June for a one day diagnostic assessment. I was wondering whether someone here could give me any details of what the day will involve. In addition do they give you a decision on your suitability on the day?
Thanks in advance. John
My pre-op evaluation, which was yesterday, included neurological evaluation, quantitative EEG, MR & CT scan, physical and blood panel.
Yes.
D-Day tomorrow 7 a.m.
thanks Mark. Did you have an earlier assessment or was that done over the web/phone. Best thoughts for you tomorrow.
Good luck Mark! Everyone is anxious to hear from you after the procedure. Maybe you make a video before-after if you feel comfortable to show it.
Will be thinking of you tomorrow mate. Looking forward to hearing the good news
Everything will be fine Marc, don't worry.
Best wishes Marc!
Best wishes Marc!
Hoping your results are even better than expected! Good luck, Marc.
Good luck, prayers for success
Rooting for an optimal outcome on every front...
Hoping all goes well for you with your treatment. All the best to you. Look forward to hearing the good news!
Best wishes for great results!
I am sending positive thoughts for wonderful improvements.
We wish you all the best Marc and would reiterate all the lovely comments made above. We will eagerly await to hear from you when you feel up to it.
Good luck Dude !!!
Congratulations in advance! You are an inspiration! All will be great, those Swiss are sooo anal-retentive and precise!
So was your pre-op eval and turnaround for the procedure all in 1 visit to Switzerland? Thats it? Or did you have to do preliminary evals or visits prior?
Best of luck!
Too soon for a report, but everything went well, hit the 1/2 mm target perfectly, very happy, recovery going fine, thanks to the support and care of my wife, Catherine, LUV U, some news and pics on my facebook page. More to follow. Just trying to get home. Miss our dog.
Swiss people have been over the top helpful and good to us.
We will patiently wait for you to recover and give us the good news.
Great news. Look forward to reading the updates👍
Wishing you speedy and complete recovery with the best outcome!
It is possible to give us a link to your FB page?
The FUS facebook page is here facebook.com/groups/6095308... . I'll leave it up to Marc if he wants to share his personal page in a public forum.
This is a grossly premature report, not to be relied on.
I'm right handed and have significant tremor in my right hand. I have assumed I would return home with no tremor in my right hand, but not to be because my tremor and other symptoms started on my left side so the right hemisphere of my brain is controlling the progression, so we interrupt the progression so the decision to stop my right side tremor or stop the progression was obvious. Dr. J did not offer me the choice. He was unequivical, stop the progression. I agree stopping/interrupting the progression is clearly better.
I have no tremor on my left side so I need only to become ambidextrous. My left side rigidity and stiffness was bad but is now gone. My range of motion in my left shoulder was severly limited due to pain which is now completely gone. My walk is smooth and fluid. if someone sees me walk down the street, they would never know anything is amiss.
I napped a couple hour thurs and Fri afternoon which I haven't done in years. Sleeping like a stone.
The video of Summer Copeland's mother was more dramatic then what our expectations should be. I am not TODAY free of PD. I have been partially freed. I will try to come back in a year depending on how much improvement occurs.
Most important, it will take my brain 3 - 4 mos to balance out both sides so I expect to significantly improve over several mos.
Marc
Marc,
I am so very happy for you! The successful outcome of your PTT is an inspiration to all PwP on this forum. We are already considering it. My husband had cardiac ablation for arrhythmia which corrected it and hasn't had any problems since he had it 10 years ago. I am trying to convince him that PTT's outcome will be the same and not to worry. We'll see. . .
when I try that all I get is "facebook.com" so all I can suggest is go to facebook and put my name (marc anderson) in the search window, but there is nothing of value for PWP there. PICS of me in the hospital -- that's all.
Would love to hear any travel or clinic news on if it is going to be possible for any of us to get there (and back). I'm due for evaluation for side two May 11th. All travel plans in place but so many unknowns.
I would consider international travel now to be a "no-man's land" at best.
If we get home, it will be on a wing and a prayer.
I hope you are home soon Marc!!
Hello Lena
Due for evaluation on May 7, I too I'm worried about travel and clinic being shut down.
MBA mentions posting pictures and news on his Facebook page. I don't have a Facebook account. Can you tell me if there is anything about travel or clinic news on MBA's Facebook?
Thank you
See above comment here
We keep checking the link to "view or change seats" to count how many seats are becoming available and we see lots of cancellations. At some point, if enough people cancel, it's going to cause the flight to be cancelled. So far, 1/2 the people have cancelled but that is because we're flying into Orlando and Disney is now closed, but I suspect the cancellation rate to N.Y., Atlanta or D.C. is much lower.
Were I scheduled for May 7, I'd keep my reservations, but I would keep my expectations low. Solothurn is not a tourist destination. Not even the taxi drivers spoke English. (Print maps from train station to lodging.) A very safe place to get delayed.
PS. We're stuck in Zurich 'til Wed and cancelled our planned tours because the only people on tours will be foreigners - so we're holed up in our Airbnb in a sketchy neighborhood.
PSS. We met JANVAN yesterday and will be having lunch together again tomorrow. He's taking us to the oldest vegetarian restaurant on the planet. A very nice young doctor.
Our flight home has been cancelled. We're on our own now. Going to the airport and present ourselves at the counter and will stand there til they find us a way home.
Marc, I understand your difficulties, but you see that man was born to overcome barriers if he has the right motivation. When this happens, this makes him HAPPY.
I'm sure you'll be home soon!
We are all with you! 👍😃
Thinking of you and hoping the best!
Good luck with getting home Mark. Its the last thing you need after your operation.
When you get a minute can you just let me know how much the procedure has cost you. I'm having difficulty getting this from the clinic. Other than my assessment day which is 2900CH which seemed a bit more than I was expecting. 🤔
35000 CHF, not including travel, lodging, exchange rate, etc. Food here is twice US. We found nice, inexpensive Airbnbs to save on eating out.
Edited 5 minutes later:
I just realised I mixed you up with another member, Markbit, who's assessment due March 31 was postponed.
Sorry
...........
Hi Gingerj
I saw in an other thread that your assessment was postponed to June 26.
Was it the clinic that suggested the new date?
My assessment appointment is May 7 and my $4000 Can $ is due within a week now.
Thank you
Yeah my appt was always June. They seem busy. Let us know if you get there OK 👍
Hi Parkie, I'm guessing that you have had to reschedule your May appointment with Sonimodul. If so, Did they contact you or you them. My travel insurance won't even quote until 1st July so I can't see my June appointment being possible at the moment.
John
Hi John
Yes, my May appointement is moved to September. I am the one who asked to move because flight was canceled. I don't think we will be able to get any travel insurance that covers anything related to Covid19 any time soon... My husband and I will evaluate risk of travelling without insurance once we are closer to date. It's a big concern. We wouldn't want to come back with possibly tens of thousands of dollars debts from medical care if hit with Covid overseas...
I think I will leave the decision for a couple more weeks but I think later in the year will prove to be less stressful with most travel back to normal. As a matter of interest did you make payment before you changed the date?
Parkie,
I have been a frequent international flyer. Keep your reservations, if you experience any problems, the airline will reimburse you. You can also email the clinic and ask them if they will be operational in May. I am pretty sure the clinic itself will contact you for any changes.
So happy for you!
Just seen this post. The evaluation involves filling out a few forms, some neurological and cognitive tests, an MRI scan (with contrast dye), a CT scan, being interviewed by Dr Gallay. I think that’s it. I was quite daunted by the amount of stuff to do in a day but I was high on adrenaline so apart from the MRI scan (I’m claustrophobic and have PTSD from my first MRI) it was all fine. I met with Dr J on on the same day after all the evaluations and he went through the results with me for over an hour and told me whether I was eligible.
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