Essential Tremor Support Group

Essential Tremor (ET) is a neurological disorder characterized by shaking of hands (and sometimes other parts of the body including the head), evoked by intentional movements. The incidence is unknown, but is estimated to be as common as one person in 20, and it is the most common type of tremor and also the most commonly observed movement disorder.

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Brain & Nervous System
/ Essential Tremor Support Group

Deep brain stimulator

FaithC
FaithC

Hi, I'm Faith. I've had an essential tremor since infancy, but it has gotten much worse over the past couple of years. It has become hard to eat, walk, etc. And because I also have Type 1 diabetes (an autoimmune form of diabetes), it makes inserting the needles for insulin delivery a great challenge, which is quite dangerous. The med I was taking didn't help much. I'm going to try a new one. But the neuro encouraged me to be open to DBS. Has anyone here undergone the surgery? I've just turned 40, and would like to avoid brain surgery, but my well-being does depend on being able to use my hands.For anyone who has had a deep brain stimulator, what do you think of the results?



Thanks.


Faith

SoTiredOut
SoTiredOut
HI Faith, I haven't had DBS, I have only been diagnosed with ET for about a year now (first symptoms were 20 plus years ago but as they worsened steadily I sought help). I am just starting to try to find out more info about it (joining this forum for one). I can't imagine trying to use a needle for injections while having the tremor!
It will be interesting to see if anyone else Has tried DBS.
Take care and hope you find some answers.
Used2B
Used2B
I have had a tremor (my head shaking) for 40+ years. I finally had DBS surgery and I wouldn't recommend it. After 6 months, I had the battery part of it removed only (didn't want anymore brain surgery to remove the nodes). It changed my personality to be more aggressive, and it made my body feel stiff, my right leg seemed to drag a little. Basically, it did more harm than good and I didn't like what it did to my personality. Don't do it...
kathread
kathread
I have had ET for 32 years. Last July I had the deep brain stimulation surgery. The doctors are still doing programming of the Medtronic device that they implanted. I cannot give you a definite yes or no answer yet but so far I do see a significant improvement in the tremor every time they program. The problem so far is that the tremor returns. But there are thousands of permutations they can try to program so I am being patient. I am happy to answer your question if you want to know more details.
thia
thia
I had the MR-guided Focused Ultrasound for my ET on Jan 19, 2018 , a little more than 8 weeks ago. I have had stroke like symptoms on my right side ever since. With intensive physical and occupational therapy there has been much improvement although I still have a long way to go to get feeling back in my lips, tongue, hand and leg. Doctor is saying 3 months but could take up to 1 year and after that damage is permanent. Have to admit my handwriting has improved but I can't hold a pen for more than a few words because I don't have feeling in my thumb and 1st finger. Has anyone had this same experience?
GKSolusions
GKSolusions
Hi Faith, Essential Tremor can be treated with Gamma Knife, it's called Gamma Knife Thalamotomy, which is a non-invasive procedure. Please visit CaliforniaGammaKnife.com. Dr. Ronald Young is a world renowned Gamma Knife neurosurgeon, who has over 25 years of experience treating Essential Tremor with Gamma Knife. He published several peer-reviewed articles on ET.