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.
Hi everyone, I am Denise, .i am 44 and have been living wit,h essential tremor disease for about twenty months...but in the last five moths it has sped up drastically due to my seizures. I have had seizures for more than a year...apparently I.ve had some that affected the area of the brain where the tremor disease comes from. At Christmas I was able to go to the store myself and buy a pair of boots. No ,ore. I cannot be left alone...My whole body tremors terrible....I have a nurse.s aide and a wonderful husband....I can barely feed myself, I use weighted utensils and always wear my weighted gloves, the tremors in my one leg are so bad that they act up my sciatica from an old back disability and I am forced to wear ice packs on my calf muscle..I get dystonia in my feet terrible. Typing this is very hard.i can no longer smile because my face tremors so bad. I failed the swallow test because my toungue tremors constantly and the water and even pudding goes dangerously close to going down into my lungs..I choke at every meal. My quality of life has dropped so dramatically in five months, and, I don’t know how to handle it...there is no cure and it.s only going to get worse. I started stuttering abruptly about four moths ago, I am in speach therapy, it is very frustrating...people perceive you as being slow because you stutter. I actually had a dear friend say to me...are you now mentally and physically handicapped...and she was serious,,,,I was stunned and didn’t know how to handle the situation, thank heavens for my husband who stepped in and set her straight.
it is also very hard on my family, I have a 19 yr old son who worries. Instantly about and he has me call his throughout the day to make sure my pills went down alright, etc, and it is hard on my father to see his little girl having seizures and systems as bad as Parkinson disease at just 44. My aunt he’s this disease...but we figured it out..she was 68 when she was finally stating to show signs and it had a normal slow progression.
ok, that.s my story...if I can make one friend out there, I will cherish you forever...
.Denise
He's remarkable, innovative, and a leader in clinical drug trials. I was also surprised at his bedside manner. He will spend the time it takes with his patients to see that all of their questions are answered. I feel very fortunate to have him and the team of neuroscientists he works with on my case.
He didn't however give me a ton of information on DBS other than what systems we're available and what he'd heard about upcoming advancements. What I've learned about DBS comes from weeks of reading neuroscience journals and research studies. Most of which I haven't even explained to the both of you. It's a fascinating field, I'm no longer afraid of the surgery, and I know exactly what's out there and what I want.
That being said, I personally am not happy with the current systems in the US market. After meeting with my neurosurgeon today I was told that if I choose to have a system implanted it can later be removed and replaced. Though, he mentioned they don't like to remove and replace the leads, yet in his opinion thought it was doable. He also explained the manner of the actual implantation of the lead, this is the part with the electrical diodes that gets implanted into your ventral intermediate nucleus or ViM of the thalamus. The lead is one of the most important parts of the DBS systems as this delivers the electrical current to your brain interrupting the tremor. The surgery process itself is perhaps a little intimidating but note, people use to have to be awake during the installment of the leads, Now it seems they're fairly confident in a method that allows the patient to remain asleep during this phase. Big news for those that suffer extreme anxiety, you can sleep through the scary part!
I've also just read something promising from the Boston Scientific North American Neuromodulation Society Investor Update 2018. It seems the currently EU only Vercise Gevia IPG and Cartesia lead are looking at a US launch in 2019! https://www.scribd.com/document/369293211/Boston-Scientific-Nans-Analyst-Slides-2018. This is the DBS system I would choose if/when it launches in the US.
Denise, I meant that improvements to what are currently available are 5 - 8 years away. For your situation, and for yours as well Sandra, I would recommend the Abbott DBS system. I don't believe waiting would benefit either of you. Brain surgery is scary and not something to take likely. After everything I've read, including risks and side effects, I think the benefit would far outweigh the risk. DBS can potentially offer you a 60 - 80% reduction in tremor.
Of course always start with your neurologist. I am not a medical Dr. They will determine the best course of treatment for you. Just keep in mind, sometimes we have to become our own advocates ;)
Exodus, thank you for researching so thoroughly and sharing it with us in such an understandable way. Hugs to you both.