Quote:
Originally Posted by lurkingforacure
No one really seemed to share my amazement at learning about focused ultrasound possiblities for PD, so I dug further and found out more.
PTT has already had clinical trials for ET (Laura, I think you were dx'd with ET first, right?) and here is the video of the world's first ET patient who received focused ultrasound treatment at UVA, be sure to note the dates, from 1/11 he was having a lot of difficulty, to 3/11, what an improvement:
http://www.youtube.com/watch?v=5oLbSzdaMLs
Here's a link describing the procedure in a bit more detail, sounds like you are awake so you can provide feedback during the procedure, and you go home the day after:
http://www.fusfoundation.org/Press-R...sential-tremor
What do you all think of this? It's like DBS, but without the gear, and with a much higher efficacy rate, with the bonus of helping symptoms other than just tremor. |
I was first diagnosed with ET and this treatment does seem promising. In fact, my doctor informed me I had both ET and PD. Sadly, tremor is no longer my most debilitating symptom when off meds, so I doubtfully would no longer qualify. My neuro has published on the idea of PD subtypes saying that our predominant symptoms can change over time. Plus there is no hard evidence that any subtypes exist; it all stems from a single study showing that tremor dominant PD has a slower and more benign disease course. That study was done on later onset PD, so who knows just how applicable that is to us diagnosed in their thirties? Do not to want to rain on the parade but just curious how many of us actually remain tremor dominant 10 years post diagnosis or 5 years on levodopa?