I had an MRI guided focused ultrasound procedure performed. I wasn't skeptical of the procedure. This type of technology has been around since the 1950s. My right side tremor and dyskinesa have disappeared. The pain in my muscles around my neck and back disappeared as well. As a side note, this procedure is not covered by Medicare coding. It's been three weeks since the surgery. It's been a life changing miracle
But,
I still have Parkinson's disease. I'd be happy to answer any questions you may have about the procedure.
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The clinic link is about treating essential tremor. Have they been successful in treating PD patients but are not allowed to "advertise" it because of certification?
Very nice! to hear that you have got relief/benefit out of that procedure. How long did the procedure take? Care to share the cost details and the name/location of hospital please ?
That's accurate and well worth it. I despise shaking. The cost can be 10 times the price and it would be worth it. I never want to shake again uncontrollably. Not depressed, none of that woe is me crap. I've been pissed off for 10 years now. I'm just starting to get over it.
They haven’t been doing FUS long enough to know if symptoms return. The Swiss clinic has been doing it for the longest and nobody has had symptoms return yet.
It is my feeling that the FDA has been in the way of this procedure for some time now. The same can be said for genetic engineering research that occurred in the early eighties. It's time for the medical field to stand up for the patient. As I said, FUS technology has been around since the 1950s. At some point, phase one is over and Medicare can cover the coding.
Did you have thalamotomy? I'm assuming so since it is currently the only FDA approved FUS for PT. Glad it helped so much! I had PTT done 9 months ago by FUS.
I m so pleased to hear you are feeling better from the above procedure. Shows so much hope with this awful condition. Just a couple of questions I was wondering about.
Was your worst symptom the tremor, or was it pain, stiffness, dyskinesia? Did you respond to meds or did they never work for you?
My husband has Parkinson’s and the Swiss Clinic is the nearest to us but they seem to focus on looking at tremor dominant Parkinson’s. This isn’t one of my husbands worse symptoms but he has most of the others.
My worst symptom was the tremor. The dyskinesia started running a close second because of the pain and stiffness. My medicine worked early on but I'm a big guy. 6'3" 235 pounds. This became a burden with parkinson's disease. I was always tired and couldn't complete a task towards the end. I'm much better now and then down to 215 lbs. And I was active beyond words prior to having parkinson's disease. I was an IT director and managed 5 states. I was in a KISS tribute band. I fished in the Gulf of Mexico and the lakes north of Tampa. I am going to try and get some of that life back. And paint the house.
Wow you certainly were a very busy person! Hopefully now you ll get your life back - so pleased for you. What a great result. Certainly lots of hope for PWP. Thanks for sharing this and answering my questions.
No we haven’t spoken to him or contacted them - just been reading a lot about it from here and other websites. My husband has been dx for just over 4 years and going through difficulties with finding the right combination of meds after Azilect added in and seemed to make dyskinesia much worse. Now going to try Amanatadine to see if that helps.
When I spoke to Dr J he said he does treat akinetic PD but I haven’t managed to find anyone who he’s treated who doesn’t have a tremor. Might be worth contacting him.
Thanks for your reply. My husband does get a tremor but it does come and go according to Meds and time of day, although they are getting more pronounced then 4 years ago.
He s has only just been prescribed Amantadine and started yesterday so he's going to see if it helps with dyskenisia.
Adding in Azilect helped with symptoms but again dyskenisia got worse and he had to reduce C/L and is now trying to balance dosage.
We ll have to see how the new Meds go and then make that decision.
So awesome to hear....this leaves many with so much hope for a better life. May i ask how old were uou when diagnosed? Any side effects you noticed ? What symptoms are you dealing with now related to PD? Did they have to shave your head for the procedure? Any balance or speech issues you notice?
Thank you for coming back on to share your experience.
I was 48 when I was diagnosed. I knew there was a problem sometime before that. My medicine caused the standard side effects. I'm still dealing with what everyone else deals with like weakness during off times, waiting for medicine to kick in, occasional rigid features. They did shave my head for the procedure but I have never had any balance issues. All my hair came back in gray which I can't figure out because I wasn't gray befor that. LOL
This is really good news. I'm thinking of having PTT fus in Switzerland this year and it seems that everyone who has a procedure like yourself has reported positively. I too am sick of tremor and dystonia. I can't imagine a life without them now. This gives me real hope 😁
DearJackmar, Congratulations on your successful MRI guided focused ultrasound procedure. It must be so deservedly life changing - I am so happy for you. This gives so many of us some hope in this difficult journey. So Thank You for being so generous with the information. Only one question. What cost does it have? I wonder if this procedure is being done in San Fco. CA
I am very happy for you! Does it treat only tremor and dyskinesia or other parkinsons symptoms? As far as I understand in the future they will perform both sides? Thank you very much!
It will help in hand, and maybe one side only Prakash1... But my mom had big time walking and balance issues as well beside extreme rigidity. As I specified earlier, before you done it they should explain the downside of the treatment. They did not to my mother.. Just the lastminute and they put the paperwork front of her to sign.. She did not signed, and we left.. Waited two years to do it... Hopes this helps
I had PD about 10 years now. I was very rigid and over medicated. I'm much better now. I was rigid in my right leg and wasn't aware of it. The results were very surprising.
Yes, my meds are cut half or better. For example, carbiopa levodopa 50/200 is now just 2x daily. I never took a pill outside aspirin in 45 years. I hate taking pills. But now it's manageable.
unfortunately can not reduce the Parkinson meds with Focused Ultrasound Skydome. And I explained before what happened my mom. She did not go for it, as she did not wanted to take a chance loosing balances and so on, just because they where able to reduce her tremor in one hand and one hand only what you can pick and chose.
That is sounds good , but did they explained to you why they able to do only one hand, Or did they explained before the process the risk of losing percentage of your capability to walk before you signed ?
I don't understand your question. This is brain surgery so there's a potential risk with the process. I understood the risks. And my capability to walk has improved 75%. I don't protect my self while walking anymore. Most of you know what I mean by this. The FDA only allows one side at this current time.
There are many centers in the US and Canada. The newest center in the US is in Nebraska. Dr. Tierney out of Florida transferred there to open it. I’ve had an hour long conversation with him and he was delightful. I am sorry I do not know about the centers in Europe as I am in Colorado. One thing to notice is that if you get DBS or deep brain stimulation you’re not a candidate anymore . DBS has a lot of risk to it and needs to be tweaked all the time. Personally I would rather get focused ultrasound. I hear that Medicare is starting to pay for it in some states. Funny thing is the first I heard of it was on a commercial in a southwest Airlines magazine years ago . Neuravive is the company that makes the machine. Check them out. They will answer all your questions. Also have talked to someone in Seattle who is 10 years out and still has no tremor. He however had essential tremor
Not at this time. My coordination and dexterity for something so complex may be where it needs to be in six months to give a try. I could play Vai, Van Halen, Satriani but I loved playing KISS. And I was the good looking one!!!! LOL!!!
Cool, keep me up-to-date on your progress please . I used to play keyboards in a DOORS tribute band but PD took that away recently. So, did they tell you your dexterity would improve over time?
They always tell you that. Show me a guy with parkinson's disease that can play Satch Boogie. That is so cool. I love to play LA Woman. The song was well thought out. It kept the vibe through the time changes.
Parkie, EEG,CT, MRI, NeuroPysch, Ophthalmology, chest XRay, and I may have forgotten a couple. I ask my neurologist to sign the papers. No questions asked. I'm on very good terms with her. She had me scheduled for DBS. This is something I don't want to do. I know my body and I would have taken a chain saw to my neck to scratch an itch I couldn't reach. I filled into a slot at the end of the year. This way my insurance covered everything. You seem pensive about the procedure. If you need to know more we can talk privately.
Sensitivity to stress was one of the first indicators to PD that I encountered, especially after driving longer distances (my favourite pass time was long distance road trips) whilst I have very little other symptoms at this time the stress issue now has greatly limited my driving to little more than a weekly trip to the car wash. My other significant issue is walking without developing the short step syndrome and loss of balance, I can do about 6,000 steps at this time before it all falls apart. (Recently I stopped at pedestrian lights and nearly fell into the traffic) Some days the stress thing is like a fire burning throughout my system. However at this time I am able to hide the symptoms, and mentally refer to it as PD incognito
I feel a bit of a fraud at this time as the first stages seem to have passed me by at the moment, I wonder if other forum members would post their anecdotal initial and progression experience. I have absolutely no knowledge of the condition or it’s progression at this time.
Yes. Greatly. That's a great question because I sleep horribly. Since the onset of parkinson's I rarely get more than 4 hours at a time. I love my naps but I really was 6 to 8 hours sleep. I'm back to getting 4 hours of rest and a little more so it's getting better. As far as energy, I anticipate going to the gym after next week. And my wife has told me to get a girlfriend or two following about three months of gym. She knows I'll be back on top soon thereafter. Seriously, the weakness will come and go as your brain re-calibrates. It takes time but I have a lot less weakness than before. The truth is it's gonna be slow for parkinson's patients. But I plan to be back on top.
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