More on focused ultrasound
 

No one really seemed to share my amazement at learning about focused ultrasound possiblities for PD, so I dug further and found out more.

PTT has already had clinical trials for ET (Laura, I think you were dx'd with ET first, right?) and here is the video of the world's first ET patient who received focused ultrasound treatment at UVA, be sure to note the dates, from 1/11 he was having a lot of difficulty, to 3/11, what an improvement:

http://www.youtube.com/watch?v=5oLbSzdaMLs

Here's a link describing the procedure in a bit more detail, sounds like you are awake so you can provide feedback during the procedure, and you go home the day after:

http://www.fusfoundation.org/Press-R...sential-tremor

What do you all think of this? It's like DBS, but without the gear, and with a much higher efficacy rate, with the bonus of helping symptoms other than just tremor.

Should hold great promise but ..
 

Thank you so much LFC for sharing. This is some thing new combining the power of MRI to pin point the region in the brain to be stimulated by ultra sound waves. The video is remarkable and convincing, but I wonder how long it will take to make the treatment available for ordinary people like us :confused:
On a similar note, I have always held the belief that a non invasive form of DBS will be found and eventually refined to be the best treatment for PD. And If we dig in the archive of Neurotalk, we will discover many research papers on non-invasive electric peripheral stimulation used for treatment of neurological diseases.
Also, keep in mind the fact that Chinese medicine have been using acupuncture successfully for several thousands of years and acupuncture is a form of peripheral stimulation of exact points (nodes) facilitating the flow of energy (Chi) throughout our bodies.
Having said that, I confess that I am not excited any more by any research or "break throughs" treatment reported by the media. We have been disappointed so many times and all I get from the medical establishment is about 10 minutes every 6 months when I meet my neurologist and get the sinemet prescription !
Imad

PDF had a web-seminar yesterday on Ultra Sound-based treatment for PD. They may have the talk posted on their website.

More on this, later.
Girija

Lurkingforacure
 

Sorry I've been away so long. I raise my hand for being interested in this!

I was in on a presentation on focused ultrasound while attending a meeting in New York early Dec, 2012. It's more precise and far less invasive than DBS.

I'm waiting for this one!
Peg

clinical trial
 

k: http://www.clinicaltrials.gov/ct2/sh...son%27s&rank=1

recruiting Patients right now, Check it out

girija

I had focused ultrasound in 2007 for a condition other than PD. It really is amazing in its accuracy, although of course anything that takes place inside an MRI tube is bound to be expensive.

Is focused ultrasound more or less accurate and effective than Cyberknife? I believe that Cyberknife, which uses gold "seed" implants, is a bit more precise than MRI guidance, because it doesn't matter whether the patient moves.

Guided Focused Ultrasound
 

June 3, 2013

Mr. Dawson,

Dr. Elias and the Neurosurgery Department of UVA sincerely thank you for your interest in our functional neurosurgery Focused Ultrasound clinical trials.

This procedure is still in the early stage of research, so is not available as a standard therapy. Patients may only receive this treatment as part of a clinical trial. There are no other sites right now in the United States doing these clinical trials.

We conducted a 15 patient trial in 2011 evaluating the ExAblate focused ultrasound device for treatment of essential tremor. We are planning a follow-up essential tremor trial which will be significantly larger than the first, but mid-2013 would be the soonest we would expect that trial to open. It is impossible to predict an exact date at this time.

We are currently accepting tremor-dominant Parkinson’s disease applicants to UVA IRB-HSR#16203, a trial evaluating the ExAblate focused ultrasound device for safety and effectiveness in reducing tremor related to Parkinson’s disease. Patients may apply using the online database described below.
Please be aware that we are at an early phase of our research and can only treat a small number of patients as part of our trials. We hope that in the near future larger trials will be conducted involving more sites, and that ultimately, the device will be approved for these and other neurosurgical applications.

You can find more information about UVA’s development and use of Focused Ultrasound technology at this website: http://uvahealth.com/services/neuros...sed-ultrasound. Please review our responses to the most frequently asked questions, as well as a number of links to additional resources and websites.

I am a patient with essential tremor, Parkinson’s, or other movement disorder. How can I be considered for a UVA clinical trial involving Focused Ultrasound?

As trials open, we work through our database of interested patients to identify potential candidates. You can enter yourself into this database through this website: https://www.healthsystem.virginia.ed...ltrasoundtrial . Please have your basic medical information (including diagnosis and medications) available when you enter the database. Once you submit your form, you automatically enter the pool of candidates for the trial. You will not receive a reply from our team until you are selected using our approved process and screened as a candidate. At this time, we are only screening for our Parkinson’s trial. Applicants with other diagnosis will stay in the database until an appropriate trial opens, at which time they will be notified.

How can I find out which focused ultrasound clinical trials are currently open in the United States, and where the trials are being conducted?

Clinical trials that are open to recruitment are listed by the NIH, and can be found at http://www.clinicaltrials.gov/. Use the search field and enter “focused ultrasound” as well as the indication you are interested in.

Where can I find out more about Focused Ultrasound Surgery?

The Focused Ultrasound Surgery Foundation (http://www.fusfoundation.org) is an excellent educational and informational resource. Private donations to the Foundation have provided the financial support for our research to date. Their webpage that is specific to essential tremor treatment is here: http://www.fusfoundation.org/Essenti...sential-tremor.

Insightec is our regulatory sponsor and the manufacturer of the device we use. Visit their website for more information about this technology: http://www.insightec.com.

How can I receive updates about Focused Ultrasound Surgery?

You can subscribe to a newsletter that is sent out monthly by the Focused Ultrasound Surgery Foundation at this link: http://www.fusfoundation.org/Newslet...sletter-signup

Sincerely,
Charles McMillian
Clinical Research Staff
Neurosurgery Clinical Trials Office
University of Virginia Health System

more on FUS for PD
 

Wanted to add more ... as noted, Focused Ultrasound Foundation has reported positive results from trials using magnetic resonance guided ultrasound to target the thalamus to alleviate Essential Tremor. MJFF has been watching this technology with interest and has worked with the company to optimize how best to pursue for PD -- we sought a shift of focus from the thalamus to globus pallidus interna (GPi; i.e. the target for standard DBS).

MJFF will be co-funding a trial with the Kinetics Foundation for safety and tolerability. The trial will have 15 participants, 5 per site in Charlottesville, VA; Toronto, Canada; and Seoul, South Korea. The ultrasound surgery is a “clean” surgery (no anesthetic, cuts or drilling involved). Great possibilities... However, it is important to note that, like any other surgery, this is something permanent so understanding safety, tolerability and efficacy are obviously critical. Additionally, this therapeutic strategy is hypothesized as a symptomatic treatment. We will be blogging about this in the coming weeks and I will be sure to share more information as it becomes available.

Debi

I was first diagnosed with ET and this treatment does seem promising. In fact, my doctor informed me I had both ET and PD. Sadly, tremor is no longer my most debilitating symptom when off meds, so I doubtfully would no longer qualify. My neuro has published on the idea of PD subtypes saying that our predominant symptoms can change over time. Plus there is no hard evidence that any subtypes exist; it all stems from a single study showing that tremor dominant PD has a slower and more benign disease course. That study was done on later onset PD, so who knows just how applicable that is to us diagnosed in their thirties? Do not to want to rain on the parade but just curious how many of us actually remain tremor dominant 10 years post diagnosis or 5 years on levodopa?

This brings to mind something I read many years ago. An Indian medical doctor (educated in the U.S.) investigated what happened in the brain when people meditated and chanted, like many traditions do in Indian. He found that certain sounds on certain syllables vibrate certain areas in the brain. So, if an Indian guru told someone to chant a certain syllable for a certain condition, there might be something physiologically underlying it. I've sometimes wondered if we could find a sound that we could produce with our own voice that would vibrate our substantia nigra to produce more dopamine without the help of drugs.