FUS Methods Questions

[Michaelz]

Hello,

I suffer from Parkinson’s, and I’m considering considering FUS procedure.

I would appreciate if you could give some insight into the following.

To my knowledge there are 4 methods used in Fus in Parkinson’s.

1. Thelomotomy - this is a common procedure available in the US but treating only tremors.

2. Pallidotomy - this is FDA approved and available in some centers in the US. I’m concerned about the safety and the longevity of the procedure.

3. PTT - as of now available only in Switzerland. However I’m concerned about the Swiss center choosing the patients for better outcome. This method is also under trial in the US.

4. Subthelomotomy - done in Spain. I’m encouraged by their peer reviewed publications, one of them just came out last week.

Does anybody has experience with subthelomotomy?

Any opinions about these methods would be greatly appreciated.

Michael

[MBAnderson]

"However I’m concerned about the Swiss center choosing the patients for better outcome." I suspect you are actually concerned with being declined.

They (the Swiss) are not only entitled to do that, but are smart to do so. It provides the most good to the most people.

Each procedure covers overlapping, but different symptoms, so you need to figure out the symptom you want to address.

PTT covers the most.

Good luck. Let us know which you chose.

[Michaelz in reply to MBAnderson]

My problem with PTT is that we as of yet, we do not have independent verification of their method; though that may be resolved when US studies are published hopefully soon.

About subthalotomy , it appears that we have some credible studies, the latest one a few weeks ago.

healthunlocked.com/cure-par...

[MBAnderson in reply to Michaelz]

The Swiss clinic has performed several hundred procedures over many years. The trials in the US will only amount to a few dozen procedures. The trials in the US are hoping to duplicate their success.

Are you considering a sub-thalamotomy?

"The total MDS-UPDRS III off-medication score was 22.9% lower at 3 years than before treatment.." It may be a lot of risk for a small gain. (Even if the 22.9% can be relied on.)

[NewHope1961 in reply to MBAnderson]

where is the Subthalotomy procedure preformed?

[MBAnderson in reply to NewHope1961]

The names of areas of the brain don't mean anything to me, i.e., I don't know.

[Bolt_Upright]

You should join one of the Sunday Zoom calls MBAnderson is nice enough to host. Multiple people on that call have had FUS.

us02web.zoom.us/j/833522248...

Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[JohnPepper]

Why are you messing around with any form of medication fro Pd when we know that walking, especially fast walking, reverses Pd symptoms and it is very healthy and does not cost anything. Have you ever etried it?

[Markbit]

I undergo through a PTT FUS surgery 2 years ago and I'm quite satisfied. You can see my profile and read my posts on it. I know at least one case that did not went well on Spain (my neuro send him) and read about one person here who did not went well in Switzerland. Well it's brain surgery after all and you have to weight the risks. When i jumped in i knew that could not run well, but i also know ao many bad stories about DBS, that seemed my best option.

[mach262 in reply to Markbit]

Hi Markbit, what didn't go well in Switzerland with the case concerned? Did they recover at all?

[Markbit in reply to mach262]

I don't know. It was someone who posted here on HU

[Markbit]

Here is the link healthunlocked.com/cure-par...

[Markbit]

But there are lots of sucess stories. Check FB group Focused Ultrasound for Parkinson's disease

[jackedmonston]

If you have tremor-dominant PD then FUS is a good choice, IMHO. If not, it’s more of crap-shoot. I applied for FUS-PTT to the Swiss clinic, but they turned me down. The neurosurgeon at Mass General said i was not a good candidate for the current PTT clinical trial, nor any of the already approved uses of FUS. They didn’t say so, but I believe that they do not want to do the procedure on someone whose PD is not tremor dominant.

[Trixiedee in reply to jackedmonston]

I’ve had PD for 20 years and have never had a tremor and was treated successfully at Sonimodul. Why did they turn you down?