Bilateral Pallidothalamic Tractotomy (PTT) Clinical Trials in the United States

[jimcaster]

This is an encouraging sign of progress for those of us who are following the potential of Focused Ultrasound Pallidothalamic Tractotomy. However, I am a little bit disappointed that they are jumping right to those in need of bilateral treatment. I assume this prevents those of us who only need/want treatment on one side from participating.

clinicaltrials.gov/ct2/show...

[lenamm]

Yay it's open!

[MBAnderson]

Jim,

I share your concern re their assuming everyone will want it done bilaterally, but I would be quite confident in believing you can have one side done and decline to have the other side done.

However, this is what a FUS (thalamotomies and pallidotomies) neuro surgeon said to me on Tuesday of this week in response to my question as to which is more important, the neurosurgeon's skill in hitting the target or the location of the target - which, obviously, raises additional concerns.

"... I will say that the surgeon’s experience with a specific target matters the most. In addition, the technical limits of focused ultrasound system can also constrain our ability to achieve the desired outcomes.

Dr. Jeanmonod has done this surgery for several decades and has the largest singular experience in the world. The upcoming trial will test this approach in a randomized trial and prove or disprove its utility in care of PD patients."

Marc

PS. In other words, I believe the success of the PTT target and technique used by Dr. J is already well established, and if that is true, then the open question is whether or not neurosurgeons can duplicate Dr. J's success, i.e., the results of the trial will reflect the skill level of the surgeons.

[MBAnderson in reply to MBAnderson]

PS I got this May 6 from Dr. Sooch at Insightec.

I have updated ClinicalTrials.gov with two sites that will be opening in the coming weeks. It may take 2-5 business days to reflect on the website.

Please see the contact information below:

Weill Cornell Medicine

New York, New York, United States, 10065

Contact: Sophie O'Bryan 212-746-1788 [e-mail]

Contact: Blagovest Nikolov 212-746-9882 [e-mail]

Principal Investigator: Michael Kaplitt, MD

Sub-Investigator: Harini Sarva, MD

University of Maryland, Baltimore

Baltimore, Maryland, United States, 21201

Contact: Kaitlyn Henry 410-328-0939 [e-mail]

Principal Investigator: Howard Eisenberg, MD

Sub-Investigator: Paul Fishman, MD

[Despe]

Jim,

I (husband) would wait for the trial and outcome results. I would also give a little time to the neurosurgeon to gain more insight and experience in performing this pioneer (in US) operation. To us, hands-on experience is the most deciding factor.

My husband had cardiac ablation in Europe. After searching for the most experienced surgeons/cardiologists in this area of expertise, we found one of the best who performed the ablation. It has paid off! No US cardiologist even suggested ablation. Too liberal approach for the US conservative intervention, who knows. . .

[jimcaster in reply to Despe]

I agree completely. I am fortunate because my symptoms are very mild. I have a few years to wait and see how the technology evolves.

[Kwinholt in reply to Despe]

Hi there. I have a dear friend who had Cardiac Ablation twice , 2 different methods, one in the San Francisco area with the burning technique and years later in Sacramento area with the freezing technique. He had Afib and second technique was the charm. He is off all heart meds . Take care. Karen

[Despe in reply to Kwinholt]

Hi Karen!

Husband also had Afib (tachycardia) and US doctors kept prescribing medicine. We moved to Europe (job related) and found this excellent cardiologist who specialized in ablation. He also used the freezing technique. Boom, no more meds since 2011.

[Despe in reply to Kwinholt]

PS. In retrospect, I join the dotts. First, thyroid total removal, eventual Afib, and then PD. I started to wonder if the total thyroidectomy my husband had caused his PD. . .

[Kwinholt in reply to Despe]

Despe, Interesting about the thyroid. Just within this last year he has been having issues with his. Hypothyroidism. Hmm, makes you wonder. On a different note, I go tomorrow for my first appointment of testing for approval for DBS. We will see. Karen

[Despe in reply to Kwinholt]

Wish you all the best! Did you consider PTT, a less invasive procedure?

God bless.

[MBAnderson]

What did you go for?

[MBAnderson]

Are you happy with it?

[hanifag]

I had dbs can I still qualify

[lenamm in reply to hanifag]

No

[Smittybear7]

Thanks for sharing