High-intensity Focused Ultrasound (HiFU) Patient Views

I have performed a MRIgPTT FUS in Switzerland, treating the right brain hemisphere, so being the left body side treated, at the time my worst side, 3 and half years ago, after 13 years of PD, and it was one of my best choices in life. Most symptoms on the treated just vanished, like tremors, dyskinesias, distonia, neck pain, although they are evoluting now on my untreated side, I am way better than before the surgery.

The patient had Focused Ultrasound treatment done in July this year for their dominant Right hand. It gave them the use of their hand back and they would highly recommend it.

It rolled back the clock for myself. It was non-invasive and gave me part of my life back. I was the second person that received treatment in a trial study at the University of Maryland in 2015. I have had some progression but I am still better than what I was almost a decade ago.

Has anyone received Focused Ultrasound to treat their tremors? My spouse is seriously interested in it, but she would like to hear more from patients who have taken it. Did FUS work for you? How long did the treatment take? How (un) comfortable was the MRI process? Thanks!

I have not had a FUS procedure but keep in mind that FUS is just the technology used; it’s a general term and there are a variety of specific PD procedures that could be done using FUS. It’s sort of like asking about laparoscopic surgery, which is a very general term, instead of specific laparoscopic procedures such as appendectomy or gall bladder removal. There is a Facebook group that’s all about the various FUS procedures for PD, so you may want to join that for more info (though keep in mind that the moderators are strong advocates of having FUS PTT at Sonimodul in Switzerland). I’ve talked to my MDS neurologist about it and he questioned whether there are any peer-reviewed studies to back up the Sonimodul claims and also why the main marketing mechanism is a Facebook group. So do the research and proceed with caution. There is a clinical study underway in the USA for bilateral FUS PTT but it allows a very limited number of participants and to the best of my knowledge all of the sites are already full.

My father was diagnosed with Parkinson’s in 2018, two years after he developed tremors in his right arm in 2016. The tremors got progressively worse in the last two years. He was not able to eat, write or even hold any object. The tremors also appeared in his right leg making walking and balancing very challenging. In the last 8 months the tremors have begun in his left hand marginally.

In March 2024, we took a video consultation with the only hospital in India that provided this procedure - Royal care super speciality hospital in TamilNadu and my father had the procedure few days ago in August 2024.

He was ideal candidate due to his unilateral presentation of tremors dominant in his right side. The team of the doctors and nurses were fantastic, the gave us multiple opportunities to ask question over three days. Gave detailed presentation of the procedure, risks and benefits. They also presented the possibility of the outcome and the risk of recurrence.

The first day, they did physical assessment, 3T MRI, abdomen and pelvic ultrasound. The next day, they did pre surgery procedures in the afternoon and the main procedure was scheduled in the evening. They gave oral anaesthetics at four spots on the head where the helmet will be fixed. After putting on the helmet he was taken into the procedure room where I was allowed to accompany him.

The total time of the procedure was 2 hours including taking MRIs, putting and removing the helmets, repositioning the ultrasound nodes and everything else.

He went in with full blown tremors and I could see the exact time when the tremors stopped. It felt like magic (thank you, science).

In the first 30 minutes after the procedure, my father was able to eat by himself and in about 2 hours he was walking by himself. The stiffness and rigidity were also gone. His appetite is back as he stopped a lot of medication and will currently continue to take sindopa plus twice a day. They kept him under observation for two days and discharged him.

It was definitely an emotional moment for him and our entire family. His confidence is restored and his quality of life improved so much.

my spouse went thru Focused Ultrasound twice at Stanford University with negative results. But that does not mean it will not work for u.

Focused ultrasound is, generally, a worse option than DBS in cases where both are available. Focused ultrasound treatment is permanent (including any side effects caused by the lesion) and cannot be adjusted or changed in any way. As an MDS I really only recommend it if a patient has significant contraindications to surgery (poor general health, can’t hold blood thinners, etc). DBS is effective, safe, adjustable as the disease progresses, and reversible.

• Success at treating PD with High Intensity Ultra Sound. • Phase 3 trials with success in meeting their goals. • Internet support groups.

I took my child to Houston for the Focused Ultrasound treatment. It did get rid of the tremors he had on the right side of his body.