Essential Tremor

Hi Lisa, good afternoon. I appreciate all the information. Yes, I am still evaluating which procedure to do. HIFU or DBS. Where I live, in Brazil, HIFU is a recent alternative. DBS is better known. Thank you very much for the important information.

Rica, excellent, you are doing your research and maintaining some control over your destiny. My wife's experience with DBS has been wonderful and they have refined the systems further in the past five years for greater effectiveness. Once the probe(s) are placed in the brain the frequency adjustments offer many more options to impact your symptoms. In addition to larger adjustments controlled by her physicians, I am able to assist her with occasional smaller adjustments at home depending on how her medications are working. She has had PD for 15 years and is doing well and remains active cycling, exercising and teaching yoga. BTW, I was diagnosed with PD three years ago.

Feel free to ask any other questions, Joe

It is a non invasive procedure, which takes approximately three hours of your time. You go to the facility that is going to perform the scan and you are given something to drink and you have to wait about an hour. You go to the room where the scan will be performed, it takes about 45 minutes or so to do it. They can actually see in your brain if you are losing dopamine, which is a major clue of Parkinson’s. My results came back that yes I was losing dopamine and that I have Parkinson’s. There is no pain involved in this procedure.

I’ve had Essential Tremors for 9 years, I’m 73 years old. I’m in the VA Healthcare System. The VA Neurologist kept insisting I had Essential Tremor. Finally, he agreed to send me for a DAT Scan, and I learned yesterday that I have Parkinson’s. It is possible to have both. We’ll see what effect the Levodopa prescription has on my symptoms!

Yes, you can have both. I have Parkinson’s and essential tremor. I am 76 years old. Take care of yourself.

In addition, a Parkinson’s medication will not necessarily take care of the essential tremor. That’s what is happening to me and my doctor has recommended that I go to a Mayo Clinic and have the MRI focused ultrasound procedure, which is supposed to take care of the tremor. From what I have seen, there is a long wait, but it is worth it. I haven’t done it yet, but I’m in line for that. My doctor recommended the Mayo Clinic because apparently they are the best at doing this kind of a procedure. Please take care of yourself!

My boyfriend had essential tremors since he was in his early 20’s. It runs in his family. When he heard about this treatment (HIFU) he went to the neurologist who specialized in this procedure. He had the procedure done for his right hand 4 years ago. The results were amazing and he was thrilled Two years later, after it was approved that it would be covered by insurance, he had his left hand done. However, this time while the shakes were no longer there, he lost 80 percent of his ability to taste. He was told it would be temporary, but 2 years later, he still can’t taste. He heard this only happens to 15 percent of patients. He is going to go back to the doctor but we are pretty sure this effect is permanent. Having said this though, he no longer shakes which was so debilitating for him for so many years. Do your research and know the risks and make the decision if it’s right for you.

Welcome to Mayo Clinic Connect, @kateyes100. Great to hear about your boyfriend losing the shakes in both of his hands. Really sorry to hear about the loss of 80 percent of his ability to taste. I sure hope it returns naturally or the doctor has a remedy for him.

I applaud your suggestion to do your research before a procedure.

What does your boyfriend say about the experience of eating now? Has this affected his interest in cooking, eating or going to restaurants?

I meant to say that this side effect ( loss of taste) happens to 15 to 20 percent of patients that had the HIFU done. He has 60 percent of his taste so he can taste food on certain spots on his tongue. Some days are worse than others and he can taste cold things better than hot. And yes, the lack of taste has affected his interest in cooking, eating and going out to restaurants. He eats more out of necessity now.

My wife was diagnosed in March with Parkinson's. Tremors in left hand & left leg. Unable to take levodopa so she has been seeing a functional neurologist trained in acupuncture to treat PD & Tremors & also having physical therapy. He also recently introduced us to alternative treatment using products from "Gladiator Therapeutics " which appear to be offering some relief from Tremors. She very recently started that & plan to continue with that since we have been hearing of more patients with positive results. We also are reading the book "The Great
Nerve" with research & studies on vagus nerve stimulation for PD & other health related issues. Very fascinating.