Anybody else from this forum had FUS this year except Marc?

[ion_ion]

Marc gave us a lot of info about his experience in Switzerland and I'm wondering if anyone else had it.

Thank you.

[lenamm]

From our smaller FUS group I know of two people but neither are on this forum.

[Pa-zzi69]

Where can I read about Marc's [MBAnderson?] FUS [Focused Ultrasound Surgery] ?

[jimcaster in reply to Pa-zzi69]

Click this link:

healthunlocked.com/parkinso....

[jimcaster]

Here's a post from 8 months ago.

"My right side tremor and dyskinesa have disappeared. The pain in my muscles around my neck and back disappeared as well. As a side note, this procedure is not covered by Medicare coding. It's been three weeks since the surgery. It's been a life changing miracle."

healthunlocked.com/parkinso......

[Grumpy77 in reply to jimcaster]

It seems to me that your FUS report is more positive than Marc's. Do you think that's because you're more early stage than him or because FUS procedure in the US is more successful than the FUS Switzerland procedure?

[jimcaster in reply to Grumpy77]

You would have ask Jacksmar, author of the post which I posted a link to. I have not had FUS.

HOWEVER, I have met with Marc in person, both before and after his FUS procedure in Switzerland. His symptoms (most notably tremor) are much better after surgery. In fact, I couldn't detect any tremor on his left side at all. It was very encouraging to witness.

PTT (the specific type of focused ultrasound which Marc and Lena underwent) is not approved yet in the US. To the best of my knowledge, it's only available in Switzerland. In my opinion, it is the most encouraging treatment currently available. 😊

[Grumpy77 in reply to jimcaster]

Thank you

[lenamm]

In our facebook group Ailsa gives her update from her surgery at the beginning of the year. There are a few more of us with info but we all had surgery before 2020.

facebook.com/groups/6095308...

[ion_ion in reply to lenamm]

Hi Lena! Ailsa did not post from February. I was curios how she is now. Also after reading on your group I found Heather Parker had it in August but she did not post anything. It seems FUS gives good results but we do not know for how long. It is estimated for at least 5 years based on the people who had it and for 25 years by analogy with DBS (according to the dr. J theory).