New Treatment: I just watched a video from... - Cure Parkinson's

Cure Parkinson's

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New Treatment

cshamb profile image
17 Replies

I just watched a video from University of Maryland about a new treatment for PD that was having amazing results. I think it was called MRI guided ultra sound and does not require surgery. Has anyone heard of this. The video showed a person with severe shaking to no shaking immediately. She was the first person to have it done. I e-mailed my neurologist to see if they no anything about it.

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cshamb profile image
cshamb
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17 Replies

Ultrasound surgery for PwP

insightec.com/Parkinson_Dis...

healthsystem.virginia.edu/f...

on.ted.com/a01aj

ted.com/talks/yoav_medan_ul...

Roseyuk profile image
Roseyuk in reply to

Always in USA, .. My husband has advanced PD,

Is there nothing left for him , here in the uk

His PD consultant says he's on the best type of meds.,

My heart is breaking..

Ramuu profile image
Ramuu

please give me link , I have a Doctor friend in that area, unfortunately he is also suffering from PD. I can check and come back to you

cshamb profile image
cshamb in reply to Ramuu

nbcwashington.com/news/heal...

I hope I got that right let me know.

Beemacs profile image
Beemacs in reply to cshamb

The link says the page doesn't exist.

Ramuu profile image
Ramuu in reply to cshamb

When I click on this link, I get "Sorry, the page you are looking for does not exist."

Pl re-check

Ramuu profile image
Ramuu in reply to Ramuu

Okay, I located the right link, I have sent to my Doctor friend in Maryland, I will post his feedback soon

Ramuu profile image
Ramuu in reply to cshamb

Okay, I contacted my Doctor friend, for him also it is a surprise news !!.

As per him, the treatment may not suit all patients. A surgical intervention of this kind is permanent & non-reversible. But, is more suitable for younger patients. So far, this deep-brain surgical ablation program is being looked at with guarded optimism. We will know more, in a year's time. Hope this helps you at least temporarily to make a proper assessment of this tempting proposition.

He has sent me following link, which has more details about this treatment and trial and also contact person at University.

umm.edu/news-and-events/new...

hanifab23 profile image
hanifab23 in reply to Ramuu

Ramuu

check Michaelj.fox site

cabbagecottage profile image
cabbagecottage

will be interesting to hear about his thoughts on this treatment

they are doing studys in US and canada, but I don't think its available for treatment yet.

It does sound good though

grey profile image
grey

I was sent this link a couple of weeks back nbcwashington.com/video/#!/...

MRI guided ultrasound is the topic of this video. Ultrasound is guided to specific points of the patient's brain which causes heat to be generated and destroys the target area. There are several areas associated with different symptoms of Parkinson's, the lady patient I assume to be suffering from Levodopa Induced Dyskinesia and other patients referred to had been treated for tremor.

Some observations (I haven't as yet followed up):

1 I am not keen to have parts of my brain destroyed. It strikes me as irreversible and could prevent other treatment being used in the future.

2 Will the procedure have to be repeated on different parts of the brain as the disease progresses? Are there several sites for dyskinesia depending on type and location?

3 Will this treatment work on non-motor symptoms?

On the plus side, surgery on the brain not required. And the lady's ability to walk straight away and run days later is remarkable!

answerseeker profile image
answerseeker in reply to grey

The technology was developed in Israel and preliminary studies are being done in about 1/2 dozen countries around the world that I am aware of. It is being used for a number of conditions including cancers that otherwise would require very invasive surgery.

For people with Parkinson's they are including only those with tremor dominant PD who have failed to improve symptoms sufficiently with meds at this time as far as I have seen.

Because of the precision of the laser combined in real time with the MRI, actual brain tissue is not destroyed--only the mis-folded alpha-synuclein which at this time is considered to be what is sufficating dopamine producing cells.

I have not seen anything on how long the dramatic benefits last. It will take time to gather results and I imagine it will vary with the individual. Since PD develops over many years before symptoms appear a good clean up of these folds could potentially give many many years of relief. I assume they are continuing to track people who have participated.

If dopamine producing cells are not being hindered I would expect other non-motor symptoms to also improve but have not seen anything published on this.

This is only of the most encouraging breakthroughs I have seen and deserves following. Hope it doesn't take too long before it is fully tested and approved for insurance coverage since it will likely be expensive.

Sherry1960 profile image
Sherry1960

Less invasive than DBS. Sounds promising. Thanks for sharing

Hikoi profile image
Hikoi in reply to Sherry1960

The op is less invasive but the treatment is irreversible unlike DBS

Beckey profile image
Beckey

I asked my doctor about this but she counseled against it. The ultrasound burns lesions into your brain and they are permanent -- there is no reviving that tissue. And where there are lesions, there is the chance of bleeding, and strokes. It sounds less invasive than DBS, which is what I liked about it. However, if DBS doesn't work, they just pull the batteries out and either change the location or remove them for good. With ultrasound, if it doesn't work, it's tough luck. Well, that was all I needed to hear.

I must say, hearing you describe the person regaining the ability to run, and to live life without a tremor, it's pretty attractive!

Ramuu profile image
Ramuu

For Information only

Yes, I contacted Maryland Medical University. They asked me to send three video clips of 1min each and I sent them

1 video before taking medication , sitting position and then getting up and walk 10 feet , entire body

2. After medications (about 30-60 min after medication) , Again sitting and then getting up and walk 10 feet, entire body

3. Video for 1 min, at the time of medication weaning-off ; positions same as 2.

I was not qualified for the trial, comments I received from them " We do not see any dyskinesias (the involuntary uncontrolled movements) We see that with out medication you are much more stiff We do not even see much tremors, which we do not need to see for this study You handle the ball bouncing very well"

For this study they need to see significant dyskinesias after taking the medication, usually it starts within 30-60 min after the PD medication Either leg or arm or both will make very obvious movements that are non controlled nor purpose full

The current study is looking for involuntary movements of arms or legs. These movements are not tremors, but wave like, non specific movements. According to them Patients develop these movements after they take their carbodopa-levadopa medications

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