Dr. Jeff Elias of U of Virginia Responds to Email Regarding Pallidothalamic Tractotomy

[jimcaster]

In my ongoing quest to bring attention to PTT in the United States, I emailed Dr. Jeff Elias, a prominent neurosurgeon at the University of Virginia, who already performs other types of focused ultrasound procedures.

Here is our email exchange. It's in reverse order so it begins with my response and ends with my initial inquiry.

Dear Dr. Elias,

THANK YOU for your prompt reply and for all of your excellent work to combat Parkinson’s Disease.

As I am sure you can appreciate, those of us with Parkinson’s are impatient and frustrated. It strikes me as cruel, unusual, and unduly time consuming to expect us to undergo sham brain surgeries and/or to wait for years for the FDA to approve of a procedure which has already been deemed successful.

I am very glad that you know Dr. Jeanmonod and share my opinion of him. He strikes me as uncommonly brilliant and uncommonly kind.

Thanks again for the prompt reply. I hope and believe that you are uniquely qualified to expedite the availability of PTT to PD patients in the United States. If it works in Switzerland and is soon approved in Japan, I hope the FDA and American neurosurgeons in the USA will make it available. Time is not on our side.

Thanks again. I hope I don't seem to whiny. I respect you very much and am grateful for what you are already doing.

Sincerely,

Jim Casterton

On Monday, January 11, 2021 Elias, Jeff wrote:

Mr. Casterton,

I am sorry to hear of your diagnosis, but hopefully your course will be more on the benign side.

The PTT procedure is not FDA approved in the US. It has never undergone rigorous clinical trial review like STN DBS or FUS for tremor/PD. If the Europeans continue to have success with it, then investigators in the US will likely study it. Dr. Jeanmonod is an excellent neurosurgeon who I personally know.

Sincerely,

Jeff Elias

From: James Casterton

Sent: Sunday, January 10, 2021 6:00 PM

To: Dr. Jeff Elias

Subject: Pallidothalamic Tractotomy

Dear Dr. Elias,

I was diagnosed with Parkinson’s Disease in 2018. My symptoms are relatively mild and I do not have a resting tremor.

I am aware of your success with Focused Ultrasound for tremor dominant Parkinsons, but I have been particularly impressed with the the work of Dr. Daniel Jeanmonod at SoniModul Clinic in Switzerland. To the best of my knowledge, Dr. Jeanmonod is the only doctor in the world who performs Pallidothalamic Tractotomy, which not only helps with tremor, but also with bradykinesia, rigidity, dyskinesia, dystonia, and other symptoms of Parkinson’s Disease.

I have 3 Facebook friends with Parkinson’s (one who previously had severe dyskinesia, one who previously had severe tremors, and one who previously had severe rigidity and bradykinesia), each of whom have DRAMATICALLY improved after undergoing PTT in Switzerland.

I have two questions:

1. Why don't you perform Pallidothalamic Tractotomy (PTT)?

2. Why isn't Pallidothalamic Tractotomy readily available in the United States?

Thanks for helping me understand.

Jim Casterton

Balsam Lake, WI

[AmyLindy]

@jimcaster that is an excellent, specific, quick exchange. I’m writing MJFF Research Team ([e-mail]) along those lines. I’ve left voice message and have written to the generic MJFF account as well. Maybe we can organize an active campaign demanding interest w all the various PD organizations?

[jimcaster in reply to AmyLindy]

Great idea, Amy! I don't know how to organize it, but I encourage everyone to reach out to as many doctors and organizations as possible.

[Isthistheone in reply to jimcaster]

Hi Jim. Focused Ultrasound as I understand it, is doing a great for people who are tremor dominant. For PWP who are gait and balance dominant, there is no benefit at the present time. Are you aware of any developments where Focused Ultrasound is being used for GB? My GB issues are becoming quite severe.

[jimcaster in reply to Isthistheone]

My frustration stems from the fact that the United States only allows two variations of Focused Ultrasound which address tremors and dyskinesia. HOWEVER, PALLIDOTHALAMIC TRACTOTOMY (PTT) ALSO ADDRESSES OTHER ISSUES SUCH AS BRADYKINESIA, RIGIDITY, AND DYSTONIA, AMONG OTHERS. I don't think it's particularly helpful for gait and balance issues, but Lenamm, Marc, and Trixiedee know more about it than I do because they have successfully undergone PTT.

[lenamm in reply to jimcaster]

Not helpful with gait or balance unless caused by one of the things you mention . My gait was bad from dystonia, now I walk like a normal person again!

[Isthistheone in reply to lenamm]

Hi Lenamm, my gait and balance are terrible. This festinating gait is serious stuff. I get it primarily when I'm at peak dose. It is so severe I can't control it. I have to use my walker everywhere. Can you explain what type of gait you had. Very interested in treatment if it will work. Thank you.

[lenamm in reply to Isthistheone]

I looked like I had CP on meds and got dystonia in my whole leg and foot from meds. Could walk almost normal off meds.

[Isthistheone in reply to jimcaster]

Hi Jim. I also think if you respond favorably to Sinemet they won't do ya.

[jimcaster in reply to Isthistheone]

That's correct. At least for now...

[AmyLindy]

A response from a UVA Researcher led me to the Motherload: fusfoundation.org/the-found...

See the Foundation Home page for all the ongoing efforts so that we can consider developing a strategy to increase strength /tempo. In the direction of FUS PTT 🇺🇸

[jimcaster in reply to AmyLindy]

I searched for Parkinson's related information on the site and re-read the story about a successful trial conducted by Dr. Elias and a doctor from Spain. They focused on the subthalamic nucleus (STN). The STN is a proven neurosurgical target for treating the main movement disorder features of Parkinson’s disease: tremor, bradykinesia, rigor, and postural instability. I wonder what the difference is between that target and the Pallidothalamic tract which Dr. Jeanmonod focuses on and why they each think their target is best. I will see if Dr. Elias will answer that.

[MarionP in reply to jimcaster]

Very interested to follow. ESPECIALLY if we can learn from each why, as you said, so they can be subjected to critical scrutiny...after all, who's taking all the risks?

[AmyLindy]

Response from a UVA Researcher today:

“Off the top of my head, I’m not sure where this particular application of focused ultrasound stands in the approval process. In general, this sort of thing must go through multiple stages of clinical trials, starting small and then growing larger, to determine the safety and effectiveness of the approach. If successful, those results are then submitted to the FDA for review and potential approval. The best answer to how you can help might come from the Focused Ultrasound Foundation, a group here in Charlottesville that is dedicated to advancing the technology for medical purposes. You can find their site (and contact info) here: fusfoundation.org/

[AmyLindy]

See FUS foundation.org where Retired UVA Neurosurgeon, Dr Kassel and Legal Thriller author, John Grisham, JD are interviewed for their FUS Foundation’s work and have ranked in the top 10 through Charity Navigator. Their site has all the drop downs to demonstrate status of FUS research roll out for a variety of conditions approved and forecasted. Their interest is to aggressively push for testing and approval in the USA. We should join forces w them @jimcaster aren’t you a JD? I’ve got a medical background. Let’s have a live strategy conversation soon. Interim: fusfoundation.org/diseases-...

[jimcaster in reply to AmyLindy]

Yes, I do have a J.D. and would be happy to help.

[Hidden]

Approved: FDA Expands Exablate Neuro’s Use as Motor Symptom Treatment in Parkinson’s disease (focused ultrasound)

healthunlocked.com/cure-par...

[jimcaster in reply to Hidden]

I'm not sure exactly what was approved. FUS for tremor dominant PD was already approved in the United States and Pallidothalamic Tractotomy (PTT) is currently being trialed in the United States . lenamm , can you explain the significance of this recent approval. I know it isn't for PTT, but I don't know what it is. Is it for the third version of FUS which was already approved in Canada?

[lenamm in reply to jimcaster]

Pallidotomy ,what Marc received the placebo in the clinical trial, was approved. It can only be done on one side and mainly treats dyskinesia.