SoniModul Update

[eschneid]

I happened to be awake-what a shocker and received this update....

Dear Patients and Families, here we are. Tomorrow will be my first day of unemployment, but our heads are still full of projects. First of all, as promised, an update on the situation.

From tomorrow onward, Ms Rossi and I are no longer employed by Sonimodul (David will still be employed for some time to help the professor transfer data from patients who want to retrieve their files, which I strongly encourage all patients to do).

I've been very busy over the last 6 weeks putting together a business case with Bern University Hospital, which was very interested to get us (and our experience). Unfortunately, I have been told end of last week that finances will not allow the university hospital to be equipped with an ExAblate (MRgFUS). Still, I have verbal assurance from the head of neurosurgery in Berne that he will collaborate with me, but I need to set up in private practice nearby first.

The difficulty will therefore be funding, because the cost of the system is hard, if not impossible, to assume outside an institution. The current Insightec model is either based on the Spanish clinics, which finance their system by treating large numbers of patients or like in the US in charging patients/insurance companies $$$.

The logical conclusion would be to say too bad, and hope that others around the world will take care of it, but I don't think we should leave it at that.

We're thinking of setting up a foundation to finance (at least in part) the cost of the equipment ( around USD 2.5 million) and at the same time setting up a new practice (probably in Bern, our national capital) to be able to carry out consultations. Further information on this will follow.

At this stage, we are of course open to any constructive proposals.

If it's any reassurance, you should know that I've decided not to return to general neurosurgery for the time being to give all my time and energy to the MRgFUS project, I'll see how long I can afford it.

Kindest regards

Marc Gallay

Eric

[jimcaster]

Thank you for sharing this. The whole situation is very unfortunate.

[pdpatient]

Not sure if you believe in Karma, but I do. Seems like Parkie- cursed them on her way out of this world.

[Grumpy77 in reply to pdpatient]

Don't get it. Who at the receiving end of this karma and why?

[pdpatient in reply to Grumpy77]

Grumpy77 The last post that Parkie- made was heartwrenching and was a full account of her experiences at Sonimodul. Apparently, after her FUS failed and she turned to the doctors for the help they became defensive and confrontational and were quite rude to her. They denied that the procedure was a failure. As you know, Parkie- exited this world using the medically assisted death option in Canada.

Hence my comment.

[Despe in reply to pdpatient]

From past comments, I remember Parkie said that she was diagnosed with MSA, based on symptoms. I might be wrong, but if she was diagnosed with MSA, would FUS have worked?

[Trixiedee in reply to Despe]

She was diagnosed with MSA which is easily misdiagnosed as Parkinson’s. This doesn’t excuse Dr J’s response but it wasn’t the response of the whole clinic. Sonimodul has helped lots of people with Parkinson’s and I hope they can continue after Dr J’s retirement.

[Despe in reply to Trixiedee]

There is a distinction of symptoms and a good MDS can diagnose correctly. Hubby's Vanderbilt and Mayo doctors explained to us the difference between PD and MSA, i.e. eye sight, sex drive, etc. At Sonimodul, were there aware that Parkie was diagnosed with MSA? If they knew and still operated on Parkie, they are criminals. . .

[Trixiedee in reply to Despe]

No, Sonimodul weren’t aware of the MSA diagnosis. I don’t think Parkie’s believed it at the time. Parkie had the same Parkinson’s symptoms as me and thought she had PD. The neurological tests at Sonimodul confirmed to the doctors that she had Parkinson’s. Their examination was much more thorough than anything I ever had in the UK. I think PS and MSA are hard to distinguish until they are quite advanced. I had a previous misdiagnosis of MS and the Sonimodul staff were sure I had Parkinson’s.

[Crusoe7]

I've seen the message announcing the closure, on the official website and got an email from Prof. Jeanmonod, but not the one above (from Dr. Gallay). Did you get it by email? Anyway, thanks for sharing.

[eschneid in reply to Crusoe7]

Here is the What's App link for Dr. Gallay's updates chat.whatsapp.com/ILTM4hhZJ...

[Crusoe7 in reply to eschneid]

I'm already in it. Thank you!

[Tayogi]

Thank you for sharing this, please keep us updated.

[eschneid]

Dr. Gallay sent me a What's App link to join the SoniModul report on its future.

Get the app and join the group to receive the occasional updates from Dr. Marc Gallay.

chat.whatsapp.com/ILTM4hhZJ...

Eric