Focused Ultrasound : I had my FUS... - Parkinson's Movement

Parkinson's Movement

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Focused Ultrasound

Trixiedee
Trixiedee

I had my FUS treatment two days ago at Sonimodul and although it wasn’t easy with a full on dyskinesia attack I really enjoyed the sonications where I knew my brain was being fixed. My left side is symptom free now and I can walk. Thoroughly recommended. The team there are incredible and I felt my brain was in good hands. They said the procedure went really well and for the first time in 20 years I feel much closer to ‘normal ‘ neurologically.

50 Replies
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So pleased to hear yet another surgery success story! Whether it's FUS or DBS, surgery is the one thing that is here and now with the potential to really move the dial on the quality of life front.

Unless I'm wrong, you were a bit nervous that you may have waited too late. Seems those concerns are now no longer?

Trixiedee
Trixiedee in reply to ChrisWF

No, I don’t think there’s such a thing as too late unless dementia has set in.

Congratulations! Looking forward to reading more when you are feeling expansive. Didn’t you have to be unmedicated for the procedure (for the previous 12 or so hours)?

Trixiedee
Trixiedee in reply to Juliegrace

No I didn’t have to be med free before, only on the Monday morning for assessment of my symptoms.

At last, you got your turn. Thank you again for bringing the FUS PTT info here at HU.

To the non tremor dominant members, who's quality of life is usually worse than tremor dominant, there is hope!

Bluewater123
Bluewater123 in reply to Parkie-

My mom is non tremor dominant. Does that mean DBS is not an option but FUS is?

Parkie-
Parkie- in reply to Bluewater123

No, that's not what it means at all. Both procedures are possible for non-tremor dominant.

So happy for you !!!

Very good news. I sent my files yesterday and I plan to do it next year.

ion_ion
ion_ion in reply to ion_ion

So, I sent my files yesterday and today David Moser already replied with dr. Jeanmonod in the CC line telling me next week the doctor will study my files and he will give an answer.

They are reacting pretty fast. David asked me if when I did the videos I was taking the medication which helps just a little with my tremor.

ion_ion
ion_ion in reply to ion_ion

I replied I was taking medication when I shot the videos and David wrote back to shoot another set of videos being 24 hours drug free. The last pill I took was at 4.30 pm Friday US EST. I'll shoot the videos today at 4.30 pm.

For few months I was waking at 3 am every night so I had to take a c/l pill or/and 10g melatonin to get asleep again. Last night I slept continuous for 9 hours without any pills.

Trixiedee
Trixiedee in reply to ion_ion

My ‘off’ videos weren’t very off as when I’m really off I can’t think enough to direct the person with the camera. They never saw me really off, even when I was med free in the morning at the clinic.

Where is Sonimudal?

Trixiedee
Trixiedee in reply to Tonia1952

Switzerland

The cost?

Trixiedee
Trixiedee in reply to ABDESSLAM1

34k Swiss francs

Thank you very much for sharing your story and congratulations! I will be following you, Lena, Marc, and anyone else who has undergone PTT with great interest. I am inspired by your courage and soooooo encouraged by your success!

Excellent news

So pleased for you. Must feel great after all that you've been through?

Trixiedee
Trixiedee in reply to jeeves19

Yes I’ve just gone for a long walk around Solothurn which is really pretty.

Yay! Thanks for sharing.

Is there a difference between FUS done in Switzerland compared to in the U.K. or US? I’ve seen FUS carried out on PD patients in both (& in Israel). And so wonder why people go to Switzerland particularly?

ChrisWF
ChrisWF in reply to jeeves19

Seems the Swiss are the only ones doing the PTT commercially at the moment.

"pallidothalamic tractotomy (PTT), has been performed since 2011 using the MR-guided focused ultrasound (MRgFUS) technique"

My understanding, which is limited, is that the PTT procedure offers a broader range of symptom relief than what is offered elsewhere (at the moment).

Trixiedee
Trixiedee in reply to ChrisWF

PTT is the only form of FUS that can be perform both sides of the brain. So for someone like me who has symptoms on both sides it’s the best option. Also Dr Jeanmonod has way more experience than anyone else in the world.

healthabc
healthabc in reply to jeeves19

FUS in USA vs Switzerland- they target different parts of the brain. Dr Mischley, in Seattle Washington, did a great interview with Dr J. If you consult with her, she will likely give you the full scoop.

Hi Trixiedee. I am scheduled for mid November. Nice to know yours went well. Yes, the team are great!

Parkygal

Trixiedee
Trixiedee in reply to Parkygal

Wishing you a great experience. You might meet Lena there.

Trixiedee
Trixiedee in reply to Parkygal

Where are you travelling from?

Incredible news! Great that the procedure went well.. How long did it take? keep us posted!

Trixiedee
Trixiedee in reply to gginto

It took about 3 hours think.

where is Sonimodul please? thank you.

Trixiedee
Trixiedee in reply to beehive23

Switzerland

Can you turn over easier in bed and is your speach better than prior the surgery? (If you had these symptoms before)

Thank you

Trixiedee
Trixiedee in reply to Parkie-

Yes I can turn over in bed and my speech is stronger. I really struggled to turn over in bed before.

Parkie-
Parkie- in reply to Trixiedee

That is so good to know. I have had a hard time turning in bed since the very beginning of symptoms. It got a little harder each time I had to decrease c/l because of side effects. By now, my husband has to move me in bed... I feel like a beached whale... As far as speech, my husband is about the only one who understands me by now: "off" meds stiff jaw, tongue and lips, "on" meds jaw dystonia (different difficulty, no more easy to understand)... Very soft voice on and off... Looking forward to Feb. Also, can't wait to take a waĺk like you did: it's been such a long time...

So happy for you! Every hope realized is a victory.

Does it matter what stage of the disease you’re in? Presently, only my right side is effected.

You have to be medication resistant - ie not react well to medication. I have been on Sinemet for 11 years and was suffering for terrible dyskinesia and off times. If medication is working well they will not treat you.

Congratulations. Where did you get the job done?

Trixiedee
Trixiedee in reply to JayPwP

Switzerland

Did you have movement problems no tremor non-tremor dominant. The procedure is it removes or destroys an area of the brain- for tremor the procedure is different.

I researched the surgery called a Pallidotomy this was performed more than 50 years ago but not done because it was to difficult only a few Doctors would perform the operation. The results for a successful surgery were very good.

The pharmaceutical industry created the need for drugs that are not successful and very damaging.

FUS is still used mostly for tremor my guess is the pharmaceutical industry does want to cure people not enough money to be made.

I tried getting FUS for my wife years ago but she did not have tremor and $38,000 we did not have.

Great to hear that someone was helped sadly this procedure should not cost $38,000 and should be available at a reasonable price.

So , I’m confused. This procedure works for tremor dominant, or non tremor dominant, or both types? Thank you.

jimcaster
jimcaster in reply to FergusonJR

Both. Trixiedee is not tremor dominant, as evidenced by this comment she made two years ago when she first posted about her desire to undergo FUS.

Trixiedee

2 years ago

I want to find someone who doesn’t have a tremor who has had FUS as I have no tremor.

Finally. Your perseverance paid off. A lesson for all of us. So happy for you. Enjoy your new life!!

That is wonderful news! Congratulations!

After I sent my medical reports and two sets of videos (on medication and 24 hours off medication) dr. Jeanmonod just emailed me today asking for a phone conversation for next week.

I'm just curios if you went through the same steps.

Thank you.

Trixiedee
Trixiedee in reply to ion_ion

Yes I did

Wonderful news Trixiedee! 👏👏👏

So good to hear your great news Trixiedee! The the first time, when you were turned down because you lacked a support system for recovery, we were feeling so bad for you. At that time, we were anxiously awaiting to hear back from them after sending in videos. When we did hear back, our experience was heartbreaking.

Here's what they said:

"The clinical state of Mr. ___ displays as main problem a gait disorder, which requires a bilateral treatment with two interventions separated by a year. In forms with akinesia and rigidity but without typical tremor, as is the case for him, the results are mixed, with improvements but also worsenings, due to brain reserve reduction and psycho-emotional load. The chances of satisfactory relief would thus be low. A sufficient general and neurological health state is also important to stand a long therapeutic program out of the USA."

This was really our last hope. Wondering if it might be worth it to approach them again with new videos. Any thoughts?

Trixie, fantastic news! I am so happy for you and anyone who had a successful FUS operation. Please keep up posted!

Do you still have to take meds? If so, I imagine a lot less now.

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