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Brain Implant, DBS, Post Stroke, Thalamic Pain Syndrome. Info?

Posted by StrokeSurvivor @pmorgigno, May 16, 2024

Hello,
Anybody have any info regarding this. Implant was performed for "Sensory" - pain issue not Motor Skills (shaking) issue.
Thank you

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Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 16 1:45pm
In reply to @birke "@lisalucier Hi Lisa, Thank you so much for your personal note! We have not heard about..." + (show)
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@lisalucier
Hi Lisa,
Thank you so much for your personal note! We have not heard about a surgery that could help yet. The approach has been either recommending baclofen, botox or keep going with exercises. None of these have helped with his pain and quality of life. I believe there has to be a way to help him. We just haven't found it yet....at least, not here at the hospitals or clinics in Minneapolis. We would be willing to travel to Mayo. I feel it is our only hope right now. He needs help and he is willing. I'd do anything to help him. His insurance includes the Mayo. What is the best way to get started on this new journey? Would you like me to call you?

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Hi @birke - here is the link you'd want to go to to request an appointment http://mayocl.in/1mtmR63.

You also might have your primary care doctor refer your husband directly to Dr. Peter Rhee, the hand surgeon in Mayo Clinic Orthopedics in Rochester, Minnesota, who was featured in the article I posted.

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birke | @birke | Mar 17 2:51pm
In reply to @lisalucier "Hi @birke - here is the link you'd want to go to to request an appointment..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi @birke - here is the link you'd want to go to to request an appointment http://mayocl.in/1mtmR63.

You also might have your primary care doctor refer your husband directly to Dr. Peter Rhee, the hand surgeon in Mayo Clinic Orthopedics in Rochester, Minnesota, who was featured in the article I posted.

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@lisalucier
thank you again. We will follow thru.

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StrokeSurvivor | @pmorgigno | Mar 19 8:00pm
In reply to @birke "@pmorgigno Hi Paul, I apologize for missing your note. Thank you for reaching out. How are..." + (show)
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@pmorgigno
Hi Paul, I apologize for missing your note. Thank you for reaching out. How are you doing now? Have you found help with your pain?

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@birke
The off-label D.B.S and off-label R.N.S. implants have failed at reducing my Pain.
It's at a 9 and 10 some days. Their is no cure of help for Thalamic Pain Syndrome.

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birke | @birke | Mar 22 2:37pm
In reply to @pmorgigno "@birke The off-label D.B.S and off-label R.N.S. implants have failed at reducing my Pain. It's at..." + (show)
Profile picture for StrokeSurvivor @pmorgigno

@birke
The off-label D.B.S and off-label R.N.S. implants have failed at reducing my Pain.
It's at a 9 and 10 some days. Their is no cure of help for Thalamic Pain Syndrome.

Jump to this post

Hi Paul, I am very sorry to hear that the procedure did not work. Thank you for sharing your honest feedback with me. I tend to think that since the pain did not come on until months after the stroke, as though a switch was flipped on, could there not be some way to turn off the switch? To deactivate it? That is what I keep wondering and searching for.
How about extracorporeal shock wave therapy? I saw an article on this through mayo's website under the NEWS tab. Here is the name of the article....The evolving use of extracorporeal shock wave therapy in managing musculoskeletal and neurological diagnoses. Post stroke spasticity pain is mentioned there and here.....an NIH article that references this for post stroke pain and spasticity.... that article is titled....Effectiveness of Shock Wave Therapy as a Treatment for Spasticity: A Systematic Review.
Be brave with me and let's keep looking to find a way.....or make one.

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