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Brain Implant, DBS Modulation, Post Stroke, Thalamic Pain Syndrome
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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@pmorgigno - I moved your post here where you were previously talking to members about your journey with ischemic style and thalamic pain syndrome so they could see your current update.
Electrocution-like burning pain down your right side sounds very rough, along with medications not helping. Unfortunate the DBS implant did not help.
Tagging some members who may be familiar with an RNS implant or have talked about thalamic pain syndrome @wildeharpe @catcat @onfire @excentrk @ktmnep @catcat @excentrk @ktmnep. @kariulrich @jcb721 also may have some input for you.
Lisa, Thank you.
The neurosurgeon is going to experiment with the epilepsy surgery - RNS implantation -off label use for my constant burning and electrocution.
I would like to talk to some RNS patients to discuss what to expect.
Currently there is No support for me whatsoever since I cant even find someone that has thalamic pain syndrome.
Paul
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1 ReactionHelen,
Ischemic Stroke was 3 years ago and 1 month after stroke Thalamic Pain Syndrome kicked in and has gotten worse as time goes by. 2 years ago off label use D.B.S. was performed and that only aggravated the issue. Over 1 year of modulation of electrodes failed. Now at year 3 UCLA neurosurgeon wants to perform off-label R.N.S surgery - an effective procedure for epilepsy but I do not have epilepsy. The R.N.S. will have to be "tweeked" to possibly give me some pain relief. Haven't rested in 3 years because of the 24/7 burning and electrocution pain. Getting clearance for R.N.S. surgery in fall.
Paul
I'd like to learn more about this and your journey. My husband has post stroke pain from a Hemorrhagic stroke affecting the thalamic region and we have only received a diagnosis but have not found help yet. I'm wondering if we could get help at the Mayo. We leave near Rochester. Thank you for sharing.
Birke,
Look into/ask neurologist about off label use of D.B.S. implant for pain. You may get some resistance since not all neurologists are knowledgeable about it. I was hopeful but it did not aide in pain reduction. Now a different neurosurgeon wants to use R.N.S. off label implant for pain. A modified version of R.N.S. with different electrode location. Pain is the hardest thing and least responsive to these off label uses.
Paul
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1 ReactionHi @birke - wondering how things are going with your husband's stroke recovery? You'd mentioned he had post stroke pain. Is he still experiencing this?
@lisalucier
Hi Lisa, thank you for asking. Yes he is still experiencing post stroke pain and spasticity, do they help with this at the Mayo?
@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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1 ReactionHi @birke - I'm so sorry to hear he is still having pain and spasticity following his stroke.
Mayo Clinic does have a very well-regarded stroke center:
- Stroke https://www.mayoclinic.org/diseases-conditions/stroke/care-at-mayo-clinic/mac-20350122
Here is a Mayo Clinic article written for medical professionals about addressing post-stroke spasticity that I thought you'd find interesting:
- Upper extremity reconstruction for adult brain injury resulting in spasticity https://www.mayoclinic.org/medical-professionals/orthopedic-surgery/news/upper-extremity-reconstruction-for-adult-brain-injury-resulting-in-spasticity/mac-20568266
Has he consulted with a surgeon about an operation like this?
@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?