Yesterday I was finally able to have the three month follow-up visit on the ultrasound procedure clinical trial that I participated in at Stanford University on January 29. The visit was postponed from mid April because of the epidemic.
I learned that I was in the placebo group. None of the improvements in my condition is attributable to ultrasound because I did not get ultrasound. Stanford is going to schedule the procedure for sometime before the end of July. I will keep you informed.
When you 1st described your symptoms after the procedure, I believed you got the sham procedure but didn't want to interfere with your self-evaluation by saying so.
I believe it's clear now if anyone gets the real procedure, the effects on symptoms are dramatic and undeniable.
When you get the real procedure in July, I believe you will be unequivocal.
How are you feeling about the whole experience?
A little bit pissed off, though I knew the odds. It was at great expense that I had to gert airline teckets, rent cars and motel rooms, and travel to and from the airport and park on this end. They could have taken my situation into account (I don't know whether any other participants lived farther away); But I am looking forward to getting the real treatment.
I had exactly the same experience. I live in St. Paul Minnesota traveled to Columbus Ohio and ended up getting the sham procedure and all tolled, the travel cost me $6000. They further pissed me off because they could've combined trips, but they made no effort to considering my expense at all. I have some serious advice tips for people considering traveling for a clinical trial. They could've done my sham procedure all-in-one visit and save me $4500 but it was beneath them to consult with the patient about their convenience.
Over the past 10 years the Minneapolis VA has not scheduled a single appointment without consulting with me 1st and the people at Wexner Medical Center didn't consult with me one time about anything.
Surely the trial should reimburse you all out of pocket expenses. The SPARK trial pays mine. We resume on Thursday
nope. Gave me $500.
PS> plus, I asked them the cover my postop follow-up evaluations and they said only that I committed to fulfilling that obligation. So I did, at my own expense.
That's pants.
Totally hear you. Time, $, and effort wasted!
However, the highest quality studies are randomized in addition to double-blind, so it seems the luck wasn't in your favor.
The power of placebo is undeniable though - a positive mindset has a powerful real effect on actual physical changes and some studies documented it increases the body's production of endorphins and dopamine among others.
I take 4 placebos a day to keep healthy - really works!
Lol that's a good one. What brand fo u recomend 😂
SMARTIES CANDIES!
Thanks for your kind advice 😂
I will be getting the actual focused ultrasound treatment on June 3, which is next Wednesday. I will be traveling by car to Palo Alto tomorrow and have a COVID-19 test on Monday. I am also to have some blood work done Monday or Tuesday.
I am now working on trying to find someone to drive me home to Southern California in my own car on Thursday. I may have a prospect. Another friend is trying to talk me into looking at the cost of traveling each way via Uber or Lyft. I will do that but expect that it would be prohibitively expensive. This friend hinted that he might be able to provide some financial assistance.
A fall-back option for me Is to get rides to and from the procedure on Wednesday from local providers and postpone my return trip until Friday with myself at the wheel.
The study coordinator answered some questions for me yesterday about the severity and duration of side effects. Among them are headaches, which could last for several days; loss of balance, which could also last several days; nausea; and weakness on one side of the body. The last side effect is apparently the one that will be felt the longest. I expect to learn today whether a friend will be coming up via rental car to drive me home.
Best of luck to you! Please keep us updated on your progress.
Best of luck. Hope it goes well
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MRI-guided Focused Ultrasound Surgery (MRgFUS) Parkinson's - Unilateral Lesioning of the Globus Pallidum - clinicaltrials.gov NCT03319485I
Clinical trial
Clinical trial
