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phoggie

Any shakers on here?

phoggie
4 years ago
last modified: 4 years ago

I have had Essential Tremor for twenty years and it has gotten to the point of not even being able to write my name, drink from a cup, thread a needle, cook with out spilling, button clothes, use a curling rod...and on and on! BUT I am extremely excited that there might be a non-invasive procedure that could give part of my life back.

I researched and found Focused Ultrasound and am in the process of being approved for this...depending on the thickness of my skull. This is relatively new in the US...FDA and Medicare approved in 2016 and done at Mayo Clinic, Cleveland Clinic, and several others, mostly in the northern half of the US. I also am a member of the International Essential Tremor Support Group and those who have had this procedure are thrilled with the results. I have been chatting with some ladies in adjoining states who had the same surgeon that I would have.

FUS differs from the often used Deep Brain Stimulation done for Parkinson’s since it is done with a focused laser beam through the skull instead of drilling three holes in the skull and inserting wires into the brain...which I found too risky for me.


But even more exciting is that they think this same type of Ultrasound may be able to give help for Alzheimer’s...and wouldn’t that be an answer to many people‘s prayers?....sure would be mine!


Comments (30)

  • jtc
    4 years ago

    I have never heard of this, but I hope you have good results from the procedure.

    phoggie thanked jtc
  • patriciae_gw
    4 years ago

    Fascinating. I hope it works for you. I have known people with the problem. It is so limiting.

    phoggie thanked patriciae_gw
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  • rob333 (zone 7b)
    4 years ago

    Best of luck!


    I don't have tremors, but my niece with cerebral palsy does. She wants this: https://www.liftware.com/


    phoggie thanked rob333 (zone 7b)
  • greenshoekitty
    4 years ago

    Good luck, and know I shall be praying for you.

    phoggie thanked greenshoekitty
  • Marilyn Sue McClintock
    4 years ago

    I too will pray you get major help from it.

    Sue

    phoggie thanked Marilyn Sue McClintock
  • caflowerluver
    4 years ago

    I have Parkinson's and have had it for close to 10 years. I have a constant very strong tremor in my right hand and have tried to train my left to take over. It hasn't worked out that well.

    Like you I can't do any of those things; write, drink from or even hold a cup, knit crochet, embroider, sew, cook - measuring ingredients or cut up food, apply makeup, cut my nails (hand shakes so much I can't get a manicure), put in pierced earrings, photography (I use to have a dark room), even gardening is hard, plus a whole lot more. People - think how many things you use your hands for in a day.

    I tried taking 5 different medications over the years for it but either they didn't work or had terrible side effects. I thought about DBS and checked into it a couple of years ago but didn't like the thought of having holes drilled into my head and wires connected to a my brain that ran all the way to a pacemaker device in my chest.

    Exactly a year ago I went up to Stanford here in CA to be checked to see if I qualified for Focused Ultrasound. I passed all the tests and they said I would be a perfect candidate. It hasn't been approved by Medicare for Parkinson's even though the procedure is the same as for ET and it has been approved by FDA. I am on the waiting list at Stanford, but don't know when it will be approved. I could have it done, if I pay for it at the cost of $50,000.

    phoggie thanked caflowerluver
  • lindaohnowga
    4 years ago

    Phoggie, I am praying that your insurance will cover the procedure and that it will really work for you. What a blessing that would be and if it will work for those with Alzheimers too, that would be wonderful.

    phoggie thanked lindaohnowga
  • User
    4 years ago

    Phoggie, sounds promising! Hope you get approval.

    caflowerluver, no estimated timeline for approval?

    My SIL had DBS for her Parkinson's a couple years ago. While she has gotten some relief, it's not what she had hoped for. She's also dealing with debilitating back pain.


    phoggie thanked User
  • kathyg_in_mi
    4 years ago

    I've got ET so will keep a close eye on this thread. Writing is a pain in the butt, using a computer mouse is ridiculous!

  • OutsidePlaying
    4 years ago

    Phoggie, I sincerely hope you get your approval for FUS and that it will be successful It sounds so exciting that there are now non-invasive treatments for this. 🤞

    phoggie thanked OutsidePlaying
  • joyfulguy
    4 years ago

    Did you see the story on the pedicure and tipping thread of the lady who went with her sister for pedicures, who'd thought of giving them to one another at home, but her sister had such tremors that she wouldn't let her anywhere near her feet with any sharp object.

    I've been having some hand tremors, but not yet enough to be troublesome.

    ole joyful

    phoggie thanked joyfulguy
  • desertsteph
    4 years ago
    last modified: 4 years ago

    so sorry to hear you have tremors that limit you phoggie! very hopefully that this new treatment will help you and that you get approved for it. please keep us all posted on here thru out your journey. I will also add you into my prayer list.

    I'm the one joyfulguy mentioned. I have the tremor, sister has the bad eye sight. neither of us trusts the other with a sharp object! lol! my right hand started this back in 2001 and I was tested for Parkinson's. I don't have it. but in the beginning of this I do remember attempting to sign a check or deposit slip at the bank and my hand would jerk and the pen would fly out of it on its way to the teller! we had many episodes of that... then he started signing for me (to save his own life) and had me just put an X. in time I could initial it. now I can sign - but it isn't pretty! There are things I can't do - tiny, close up stuff like put a battery in my watch, using a screw driver for something is a struggle. and I often drop things - or as I say 'it flew out of my hand '. that happened 2 nights ago with the container I keep pup's kibble in. I had kibble everywhere! I got most of it up and let the far flung bits wait until the next day - for daylight to hunt them down. I never know when something like that will happen. I've given up trying to change the air filter on my car myself. and if I'm over tired or stressed (often) the tremor will be more pronounced. I don't use much glassware or other things that will break if I drop them. I can hand sew but I use needles with a large eye and it still takes me some time to do it. on a bad day I don't even try it!

    mine isn't as bad as some here have posted, but I can certainly identify with your struggle to do things that have always been part of your normal life. I can still use a mouse (never thought about that), tho it has also taken flight a few times. I'm surprised it still works, over the yrs it has had many hard landings.

    I also have 3 trigger fingers on that hand and when they act up, the pain can cause me to drop anything.

    phoggie thanked desertsteph
  • Camden England
    4 years ago

    I have had a familial tremor since the age of twelve.

    It is also called an essential tremor but with a genetic component.

    I am very interested in this procedure.

    I hope all goes well with you.


    phoggie thanked Camden England
  • georgysmom2
    4 years ago

    Phoggie, reading this just made my day. I am so happy for you. I hope you get to do the procedure real soon.

    phoggie thanked georgysmom2
  • jemdandy
    4 years ago

    I think the term "laser" beam is an error. A laser beam would interact with the surface burning the scalp and if strong enough, burn a hole through the scull before penetrating to the brain, and that would be disastrous.

    I do hope the best for you. Living with a tremor that severe has got to be beyond annoying.

    phoggie thanked jemdandy
  • phoggie
    Original Author
    4 years ago
    last modified: 4 years ago

    Desert, I also was tested for Parkinson’s and thankfully, it was ruled out but I am a prime owner of ET. You are so correct...stress makes it so much worse. I hear your agony! Please do some research...great things are happening! Focused Ultrasound was only approved in 2016, so relatively new. Don’t give up! If you are Medicare age, they pay for this procedure. Good Luck!

  • phoggie
    Original Author
    4 years ago
    last modified: 4 years ago

    Jemdandy...it is because of the heat of the laser that I will have my head shaved, because my hair would trap the heat and would burn my head. It does “burn” a tiny little hole in my skull to be able to get to my brain. Deep Brain surgery, which is done frequently for Parkinson’s, drills three holes in the head and runs wires from the brain to a type of pacemaker device and I find this pretty invasive...but each to their own. Heck, I can wear a wig and that is a small price to pay if this would work for me.

  • phoggie
    Original Author
    4 years ago

    Camden....I do not know where you are from, but if it is England, it is being done there also.

  • jojoco
    4 years ago

    Phoggie, timely posting. I’m usually on the Home Decorating conversations side, but I know some of the regulars here recognize me.

    Like you, I also have Essential Tremor. I’ve had it since at least my teen years. It runs in my family. People think I am nervous (I’m not), and I can’t tell you the last time I took a delicate hors doerves off a passed tray. IT affects so many areas of my life and I hate that it is the first thing people notice about me. Anyway, this Wednesday I have an appointment with a FUS pioneer neurosurgeon in Philadelphia to learn more. Unfortunately my insurance will not cover it. I’m looking into clinical trials but will pay out of pocket if I’m a good candidate and don’t qualify for the trials.

    phoggie thanked jojoco
  • phoggie
    Original Author
    4 years ago

    Jojoco...please come back here and report on your appointment... I certainly hope your skull is of the density that is required so you can get some relief..I will put you on my prayer list. There is no facility here that has anyone qualified to do this procedure so I will go to Nebraska...but a 4 hour drive is nothing for me to make to get some help. Sadly, those who do not live in our shaky bodies have no idea of the frustration we have to put up with trying to cope. Good Luck!

  • phoggie
    Original Author
    4 years ago

    Caflowerluver....do you have your appointment yet? Please keep us posted. I certainly hope it will be the answer to your problems.

  • caflowerluver
    4 years ago

    Thanks for asking. No appt scheduled until it is approved by Medicare and who knows when that will be. I don't understand why they treat ET and Parkinson's tremors differently. They are in same part of the brain and the same treatment works on both. If I had ET instead, I could have had the surgery a year ago and it would have been covered. I just have to wait.

    Good luck on your surgery. I hope it works for you and you have a quick recovery.

    phoggie thanked caflowerluver
  • phoggie
    Original Author
    4 years ago

    Oh jojoba, I am extremely happy for you! I have not had my skull density test yet, but fingers are crossed that my skull will be a good thickness! I hope this will be an answer for both of us...please keep in touch. How could I send you my email in case I miss seeing it in here?

  • jojoco
    4 years ago

    Phoggie, It doesn’t look like you have messaging enabled on your profile page. I do. I’m happy to send you my email when you set it up.

    jo

  • desertsteph
    4 years ago
    last modified: 4 years ago

    jojoco - could the more recent change in your sight be from cataracts? have you been checked for those? I had them and didn't even realize it.


  • jojoco
    4 years ago
    last modified: 4 years ago

    Steph, I just had an eye exam last month. No cateracts. Natural aging process, I believe and perhaps too much screen time. But thank you for your thoughts. I appreciate it.

    phoggie thanked jojoco
  • phoggie
    Original Author
    4 years ago
    last modified: 4 years ago

    Jojoco...I am so tech challenged..,.how can I do this? I think the same thing is happening to my eyes also...I did get a pair of blue lenses readers which helps.

  • desertsteph
    4 years ago
    last modified: 4 years ago

    jojoco - since you were in recently they'd probably have told you. I had another eye problem in the fall of 2016 and I heard the tech guy say something about the thickest cataracts he'd seen - when he was checking my eye. It was a retinal problem I was there about. I had no idea I had cataracts.

  • jojoco
    4 years ago

    Phoggie, I pulled this from another board (after using the Houzz search function). Give it a shot and I'll send you my contact info,

    Jo

    Hold mouse over “Your Houzz” in upper right corner

    In drop down menu select “Edit Profile and Settings

    From list on left side select “Advanced Settings

    Near the bottom find “Who can message me

    Below that select “Allow anyone to message me

    or “Allow users I follow to message me