HopeNET Director to Undergo Newly Approved MRI-Focused Ultrasound

MRI focused ultrasound

Recently my Essential Tremor has become dramatically worse due to an extremely stressful situation. Consequently, I am going to undergo MRI focused ultrasound treatment at the University of Maryland in Baltimore.

My worsening Essential Tremor affects my daily life – the way I eat, pick up a cup, print, use scissors, and hold a paper/magazine. The change in my tremor has had a real impact on the quality of my life.

I have learned an enormous amount of information about MRI focused ultrasound, and I dare say few people who have had this procedure are as knowledgeable about it as I am now. Dr. Neal Kassel, the Founder & Chairman of the Focused Ultrasound Foundation (FUS), made a presentation on the procedure to a group that included myself in Charlottesville. Then at a symposium in Richmond hosted by HopeNET, Dr. Jeff Elias, the neurosurgeon who has performed the procedure at the University of Virginia, made a presentation about it.  And Charlene Aldrich, RN, MSN, the clinical research coordinator at the University of Maryland, has made presentations to HopeNET support groups in Virginia and Maryland about MRI-focused ultrasound. I even had dinner in Richmond with Eyal Zadicario, the chief engineer with Insightec, the company that provides the technology. I have also spoken to several Essential Tremor experts concerning the operation who have told me that they have been impressed with its success rate.

While I feel prepared mentally, I do have concerns. This involves the brain – the very essence of who I am. I am claustrophobic because I am big and, in the past, my shoulders have rubbed on the side of the MRI causing anxiety. I have been assured that this will be addressed satisfactorily.  I also understand that it will be noisy and tiring. But I am ready and am looking forward to seeing a substantive improvement in my tremor.

Probably the most convincing testimonial has come from Becky Epton. She was the 12th person to undergo the procedure in 2011 as part of the clinical trials. She learned about it at our Falls Church, Virginia support group in June of that year. The next morning, she called the University of Virginia and signed up. She underwent the procedure shortly after in September. It was a real success. I spoke and emailed her a number of times both before and after, and I was struck by how courageous she was. I was so happy for her when it was successful.

The big day for me is August 10th. I will keep you updated. In the meantime, please share your comments, suggestions and ideas with me.  I once lived in Baltimore. This will be a noteworthy homecoming.

— Peter Muller

Support Group Members Notice Swallowing Issues

throat swallow

From Peter:

Lou Devaugh was a very loyal member of our Falls Church, Virginia support group. At one of the meetings, he said that he was having trouble swallowing. I followed up on his comment by contacting Dr. Soren Lowell, who is a voice specialist at Syracuse who is currently conducting a study on voice tremor and the use of Octanoic Acid to treat it. She said that it made sense that problems with swallowing might be associated with Essential Tremor.

Then, at the last Columbia, Maryland support group meeting I asked the attendees how many of them had had problems swallowing. Seven out of the ten said that they had. By the way, I’ve recently had difficulty swallowing myself. It is worse when my ET is at its worse – for example after exercising or cutting grass on a very hot day.

It is something people with ET should be aware of.