Brain Implant, DBS Modulation, Post Stroke, Thalamic Pain Syndrome

@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

Helen,

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