Brain Implant:D.B.S. modulation. Post Stroke. Thalamic Pain Syndrome

@pmorgigno Can you provide more information so our community can provide you with information and support? Did a neurosurgeon perform an implant for Deep Brain Stimulation (DBS) because you’ve been diagnosed with thalamic pain syndrome? If yes, do you have specific questions? Are you wondering if anyone else on Mayo Clinic Connect has a Deep Brain Stimulation implant for thalamic pain syndrome and what their experiences are?

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Hello,
Neurosurgeon performed DBS back in Oct. 2023. Trying to manage severe pain from Thalamic Pain Syndrome
- Dejerine-Roussy Syndrome; post stroke.
Current Kaiser docs only experienced in DBS for motor skills Parkinsons issues not sensory pain issue.
Have been referred to UCLA neurology for consult with doc experienced in modulation of device specifically for pain.
Current: No pain meds currently prescribed = All have been tried and found ineffective. Pain and Seizure meds.
Pain: Electrocution feeling thru face, neck, down thru arm, groin and leg. Hot burning, frostbite feeling along with needle pokes.

Hello @pmorgigno - I'd like to also invite @san72 to this discussion as they mentioned they have been diagnosed with thalamic pain syndrome as well.

@pmorgigno - it sounds like you are still experiencing a significant amount of pain. Was implant and D.B.S. stimulation successful in any capacity at reducing your pain?

I would be happy to join you. Let me know the date and time. My husband
just had surgery Monday, May 13th so I'm caring for him. He also had a
stroke 2 years ago in his right carotid artery and went thru several
surgeries. He was caring for me with my medications and doing many
household duties that triggered my pain levels! Our lives have reversed and
I'm having a difficult time keeping up!

Hello,
Your husband had DBS surgery for pain management?

Justin,

It's been 6+ months of dozens of modes and still no pain reduction.

@pmorgigno Thank you for the additional information. That information will help other members to support you. It's great that you have been referred to UCLA to see a physician who specializes in thalamic pain syndrome. Do you have an appointment scheduled with the new neurologist at UCLA?

Please keep us all updated
Sending you best wishes for success. My thalamus pain began several months after my ischemic stroke in 2018 and also have had no relief from any
meds neurologist or pain management specialist have tried, as well as acupuncture, medical marijuana, meditation, etc. Seeking any help possible

I tried all pain meds, seizure meds ( epilepsy meds) - nothing can take help with brain damage from the area of pain that the stroke hurt. I have Dejerine-Roussy syndrome
Dejerine–Roussy syndrome - aka: thalamic pain syndrome is a condition developed after a thalamic stroke, a stroke causing damage to the thalamus.
D.B.S. implant for pain was tried. Been 5 months and the pain is worse. DBS is almost 100% used for Parkinson motor skills shakes. Extremely effective.
DBS for pain has to touch "sensory" area - much harder. I have partial use of right side but any muscle used is rewarded with Pain. UCLA has 1 doc that specializes in DBS for Pain. Kaiser referred me. Appt. is at the end of June 2024.
If you have the DBS brain surgery realize that you may have to recover as if you had another stroke. Along with that I have constant dry/watering eyes, vision is worse, odd taste in mouth and top of head - headaches.
If successful, I can expect a 1 % to 50% decrease in pain.