Day 3 post-ultrasound treatment - Parkinson's Movement

Parkinson's Movement
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Day 3 post-ultrasound treatment

Pitchfixer
Pitchfixer

I am participating in a clinical trial of guided ultrasound treatment for Parkinson’s at Stanford University and had the treatment on Wednesday. My primary symptom, pre-op, was a sometimes uncontrollable tremors in my left wrist that left my hand flopping about.

According to the physicians’ notes on Stanford’s My Health app, I received 15 doses of ultrasound. In the wake of the operation, the tremor has become far less obtrusive and somewhat less frequent. The main other effects that I am experiencing are a reduction in stiffness, which allows me to walk with more spring and flexibility, and a much greater ease in moving from a sitting to a standing position from a soft chair seat. One of the surgeons told me that it might take 2 to 4 weeks for the full effects of the operation to be felt. So I plan to login again and update my status.

74 Replies
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Yes, please keep us updated! I’m so interested in getting this done.

Thanks for sharing, good luck!

Good for you for being willing to participate in this new treatment. I am also very grateful that you’re willing to share with us the outcome as I think there are a lot of us that are interested.

Pitchfixer
Pitchfixer
in reply to Enidah

Thank you for your support of response. I will continue to check in with information about my recovery whenever there are significant changes in my body’s manifestation or lack of same of Parkinson’s symptoms.

Is there a difference between focused vs guided ultrasound?

Pitchfixer
Pitchfixer
in reply to kaypeeoh

No; I think it’s actually called focused, and I may have made up ‘guided’ myself.

Juliegrace
Juliegrace
in reply to kaypeeoh

It's MRgFUS: magnetic resonance guided focused ultrasound.

Makes sense, I had 'guided ultrasound' to inject cortisone into low-back nerve roots.

Xenos
Xenos
in reply to kaypeeoh

That's different Kaypeeoh. In your case ultrasounds were used for imagery, to guide the needle. In FUS imagery is done by MRI, ultrasounds are used to destroy tiny locations in the brain.

Wishing you the very best. Hopefully in a month you will have no tremors or any of those other typical PD symptoms.

I'd like to ask you some questions. How long have you had PD? Do they allow you to continue using your medicines? How does the intervention take place technically? Thank you very much.

Pitchfixer
Pitchfixer
in reply to Fed1000

I’ve had PD for about seven years, with the left hand tremor emerging between medications less than a year ago. I am continuing to use my medicines, so I was asked to stop taking them temporarily 12 hours before the procedure was scheduled to start. The intervention involved my being rolled into an MRI machine and ultimately having the physician team activate Ultrasound aimed at a particular spot in the brain. There were 15 ultrasound sessions lasting less than a minute each in my treatment.

So happy you're experiencing some good results! :)

Thanks for posting your treatment. Pleased to hear it went well and your symptoms are reduced. Will be interested to hear how you are doing, so look forward to your updates.

Fantastic news! Thanks for sharing!

Were you given any instructions about communicating about the research while it was ongoing?

Pitchfixer
Pitchfixer
in reply to Osidge

No, I was not. I have chosen to share my story both here and on Facebook to help people with PD become aware of the ultrasound treatment option and to provide hope. And at this point, with the vast improvements I am experiencing in flexibility and stamina just four days after I had the procedure, I am a strong advocate of this modality of care.

Osidge
Osidge
in reply to Pitchfixer

I ask as a lot of research is not reported until the end of the trial. That is for obvious reasons as there is no definitive result until the trial has ended. Your experience may not be that of all participants and, if it is not a blinded study, may be placebo. If the research is positive then I am sure that people will become aware of it.

If the clinical trial you are in is still recruiting, it might be best to let people know the details and how they can volunteer.

Pitchfixer
Pitchfixer
in reply to Osidge

Enrollment for the study I'm in is closed, and it does have a control arm that involves 25% of the 120 people enrolled nationally (perhaps internationally), of whom 15 are at the Stanford University site where I received the procedure. Those in the control group will have their status revealed in three months and will be offered treatment. I am guessing, given the difference in the way I feel and move, that I got the actual treatment, but of course I don't know for sure. Those interested in participating in future clinical trials should check out the website of the sponsor at InSightec.com.

Osidge
Osidge
in reply to Pitchfixer

It might have been better to have indicated that the trial was blinded and that your results were not necessarily those of the treatment. While it is good to give people hope, it needs to be open and honest hope.

bepo
bepo
in reply to Osidge

I believe it was stated it was a blind study. Some received the actual treatment; others a placebo.

Osidge
Osidge
in reply to bepo

The original post did not.

pdpatient
pdpatient
in reply to Osidge

Hi Osidge, Thanks for calling it out. I hope that the author of this post will edit the post and issue the correction.

Trixiedee
Trixiedee
in reply to Osidge

Someone else in this group took part in a FUS trial and noticed no change in symptoms. I think it’s pretty clear whether people receive the actual treatment or placebo in this case.

Sounds promising! Thanks for taking the time to share your experience!!

If ultrasound was. Non invasive what was the operation on

The brain??

Pitchfixer
Pitchfixer
in reply to Chicachi

Yes. They used ultrasound to burn a lesion add a particular spot in the brain that passed research has shown to be associated with tremors.

Does that also stop the progression?

Pitchfixer
Pitchfixer
in reply to bepo

I do not know.

Trixiedee
Trixiedee
in reply to bepo

I believe it does but FUS has only been practiced for a few years so nobody knows if it halts progression really long term.

mistydog1
mistydog1
in reply to bepo

No it does not stop the progression. It's an alternative to the more invasive DBS procedure.

Trixiedee
Trixiedee
in reply to mistydog1

Nobody who has had FUS has progressed.

mistydog1
mistydog1
in reply to Trixiedee

Not sure what you mean progressed

jimcaster
jimcaster
in reply to mistydog1

I think she means no one's disease has progressed (gotten worse).

mistydog1
mistydog1
in reply to jimcaster

Since the procedure no new symptoms have shown up for me at least. None of my old symptoms have re-appeared yet . Again I am only a few months out so only time will tell. Your told going in that this procedure doesn't stop progression of Parkinson's but makes living with it a lot more manageable

Did they shave youre head.. did you need a halo

Yes, they shaved my head completely. I had gotten a buzz cut four days earlier, but they wanted my head shaved completely. And yes, I had a halo--they referred to it as a helmet--attached to my head in four places and then affixed at a particular angle inside the MRI machine. I have to say that the two spots behind my head at which they secured the helmet were associated with the worst pain I experienced. In second place was the catheter, but fortunately, that's now history.

Hi Pitchfixer, Kindly issue a edit/correction in your post and clarity at the top of your post that this is a “blinded study” and that you have no idea what you are receiving- the placebo/sham treatment or the real treatment.

Didn’t you just do that?

I've had this procedure in Boston as part of a study this past October. I just had my 3 month follow up. Since I was part of the study they wouldn't tell me if I got a actual dose until I was 3 months out. My symptoms going in were tremor predominantly on my left side. I had sever rigid and pain at the base of my neck and spine along sporadic with incontrollable shaking of my leg and occasionally my hand even when I was on with my meds.

After the procedure , the intense ridged of my neck and spine is now gone that was apparent 1wk after the procedure that's when I knew even though they couldn't tell me I got the actual treatment. The main other effects along with reduction in stiffness, which allows me to walk with more spring and flexibility, and a much greater ease in moving from a sitting to a standing position from a soft chair seat.

pdpatient
pdpatient
in reply to mistydog1

But it could still be a very strong placebo effect. In fact that is documented even in cases of sham knee surgery!

From The New York Times:

The Placebo Effect Doesn’t Apply Just to Pills

“Sham surgery” has been shown in some cases to make people feel as good as a real operation, but we often ignore the results and their implications.

nytimes.com/2014/10/07/upsh...

Trixiedee
Trixiedee
in reply to pdpatient

I have never heard of any placebo that powerful with Parkinson’s. Can you post some examples?

I certainly can’t!

pdpatient
pdpatient
in reply to Trixiedee

Trixiedee, here you go:

makingofmedicine.virginia.e...

mistydog1
mistydog1
in reply to pdpatient

That's why they won't tell you if you got the treatment for 3 months. You go into knowing that you might be a sham case . However if following the procedure the symptoms you've been having for months are gone you know. MY symptoms improved within 1 weeks time. You go to follow visits 1wk,3months 6months ect. where they put you through a battery of test

Your symptoms prior to treatment and your response to the treatment sound virtually identical with mine. Having received treatment just four days ago, I, too, I have no idea officially whether I was in a treatment or the control group. I will be very surprised if the physical Results that I am experiencing are merely a placebo effect.

I started seeing real improvement within 1 week . I had the procedure done at Brigham and Woman's in Boston. Don't you just love the fancy haircuts! I'm 3 months out and feeling fantastic . For me the biggest improvement was increase flexibility and overall freedom of movement. Drop me a line and let me know how your doing.

I am feeling really good, primarily because of the loss of stiffness and increase in flexibility. If I don't medicate with carbodopa/levidopa, I am still seeing a bit of tremor in my left hand. I am curious whether you're still taking meds, and if so, which ones. I would be delighted to discontinue using pramipexole, whose side-effects for me include a tendency to spend excessively and disruptions in my sleep.

Hi they have me still taking my meds. I take Rytary every 4 hours up to 4 a day and Azilect once in the morning. There are days I feel so good I forget to take my medicine on time oops! If I don't take my medicine I will get occasional tremors in my hand but still no leg tremors and a decrease in that overall flexibility feeling. BTW your description of the feeling after the procedure was spot on.

ConnieD
ConnieD
in reply to mistydog1

Do you know of anyone who is non Tremor dominant Who had the procedure done and if so how well They did? Thank you

camper1
camper1
in reply to mistydog1

How was your experience at Brighams and womens?

mistydog1
mistydog1
in reply to camper1

I had a very positive experience. They made sure I fully understood about what was involved with becoming part of the study. I was assigned a personal care attendant who stayed with me during the whole procedure . I could ask her questions even now she's at all my follow-up visits.

camper1
camper1
in reply to mistydog1

Thank you for sharing your experience, I have an appointment with the neurosurgeon there to discuss having the procedure done.

mistydog1
mistydog1
in reply to camper1

Excellent please let me know how it goes? I was in and out of the hospital the same day. Do you know what neurosurgeon your seeing?

Ghanouni & Halpern

camper1
camper1
in reply to mistydog1

Dr. Cosgrove

mistydog1
mistydog1
in reply to camper1

That's who I had he's really nice! You must be one of the last canidates to get in because the study is now closed I was told. A lot of what you will hear sounds scary but the team is with you all the way and it really wasn't bad. the procedure itself.

camper1
camper1
in reply to mistydog1

No I’m going to him as a patient to have the procedure done. Medicare has approved it for Parkinson’s tremor. He does DBS or FUS.

I’m wondering what they are doing research on, maybe the other symptoms associated with parkinsons , dyskinesia or dystonia?

I’m happy that you had this Doctor also with good results. I hope I am a candidate and have a good outcome. Thank you for sharing your experience and words of encouragement, it really helps.

mistydog1
mistydog1
in reply to camper1

How it works is Dr. Cossgrove is the head of neurology after your visit he decides if your a candidate based on what he observes in clinic. On the day of the procedure he makes the decision as to if you get the treatment. You'll go through the same motions whether your actually getting it or not. Afterwards you'll follow up with a different neurologist. The new neurologist won't be told if you got it or not he puts you through a battery of test each visit. He'll act under the assumption you got it. Its not till you reach 3 months out will you both be told. That eliminates any bias in the followups. If you didn't get the treatment then you'll be given the opportunity then.

camper1
camper1
in reply to mistydog1

Oh, ok, I’ll let you know how I make out.

Thank You very much for sharing your experience. Any chance we have to find Hope is good. I can’t imagine how scary it must’ve been.

Pitchfixer
Pitchfixer
in reply to Chicachi

Thanks to some videotapes of the procedure and messages posted on this site, as well as the friendliness of all the providers I dealt with at Stanford, I wasn’t particularly frightened going in. Some of the side effects sounded as if they would be unpleasant, but I did not experience any of those. Bear in mind that I don’t know for sure that I got the experimental treatment, but it certainly feels as if things have realigned themselves in my body in a good way.

Please let us know how your doing as time goes on. hope things continue to improve for you.

Hi Pitchfixer,

Thanks for sharing your interesting experience about this trial. Did they tell you how long they expected the positive results to last? I know from some other people who had this treatment,the improvement is expected to be temporary.

mistydog1
mistydog1
in reply to OREOLU

I'm in the same study different location. Once enrolled they follow-up for at least the next 5 years. The expectancy is at least 3-5 years but nobody really knows hence it's a study. The reason for offering this procedure is because it's less invasive than DBS and a lot less risk . Then when it stops being a positive you can always go back and have DBS done if you want. DBS expectancy last about 10-12 years

As I understand it, there is a lot of variation in the duration of the procedure's effects. Since I'm only in my fourth day since the day of the procedure, I'm looking at the other end of the curve, that is, how long will it take until all of the consequences of the procedure first manifest themselves. I was surprised when one of the members of the medical team that administered the procedure said that it may take two weeks to a month for all of the effects to become evident.

For anyone whose interested here is a link that talks about MRgFUS:

fusfoundation.org/diseases-...

Here is another site also

file:///C:/Users/Mary/AppData/Local/Microsoft/Windows/INetCache/Content.Outlook/6UET09Q4/Focused-Ultrasound-Foundation-Parkinsons-Disease-BBB-Workshop-2018-Report%20(002).pdf

Thank you so much for sharing your experience and for your commitment to continue to share. I am so very curious about the impact this procedure will have both in the short term and long term. My husband, who has been suffering for 10 years now, is always looking for ways to minimize, if not cease, taking sinemet. I wish you only success and thank you again for being so open to share.

Has anyone got their sense of smell back after the procedure if they had lost it before?

Good for you! I hope this helps you and am encouraged....Please keep us updated...

fyi I'm trying to manage without PD drugs due to their side effects.

I've gone 2 years only using homeopathic remedies, diet and exercise. I am about the same as when diagnosed but better with strength and balance. I would be interested in this procedure if it does not require drugs

Pitchfixer
Pitchfixer
in reply to Chicachi

The study coordinator told me that she'd like me to continue the drug regimen I was on for three months after the procedure. Those are carbidopa/levodopa (both extended release and not), pramipexole, and rasagaline. I have been tempted to decrease the regimen but for now will comply with the wishes of those conducting the study.

Understand

I would be a good study I think since I haven’t started drugs yet

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