Nerve Pain from Stroke killed "Sensory Feedback" loop

I had a stroke in 2014. Woke up with an 11mm clot in the left side of my brain. Initially, I had no sensation at all, but gradually it returned. I have had pins and needles on the left side of my body since then. It comes and goes, but is manageable. In 2021, I suddenly developed peroneal neuropathy. This is the nerve that starts in your big toe, goes around your ankle, and up your leg. At first, I thought that I had an ingrown toenail. I had such intense pain in my toe. But it didn't go away. Over time, the pain had moved up my leg. I have been on gabapentin, pregabalin, marijuana gummies, acupuncture, lidocaine patches, physiotherapy, etc. A few years ago, I tried an implantable device - a nerve stimulator. It seemed to work at first, but then it stopped. When they went to remove it, the wire broke off in my leg. The doctors said that it would be too difficult and could increase my pain if they tried to retrieve it. And so my pain continues. It seems to be fine when I am standing, but increases in the sitting position, and also flares when I get into bed at night. The pain level varies. Sometimes, it is manageable, but there are times when I feel like I can't live with the pain anymore. I have wanted to connect with others who have the same condition in the hopes that someone might have some answers.

Welcome to Mayo Clinic Connect, @lsrnka. Sorry to hear about the pain continuing. To feel as though you can't live with the pain anymore is rough.

Did any of the medications you tried have any effect?

I have the same thing from my stroke last year but it is on my right side. My stroke was from a brain bleed. I use lyrica but it doesn't help much just takes the edge off the pain.

Steve,Let me know if you would like to know about surgical options. I have severe burning and electrocution-like pulses that radiate thru my right side 24/7. It is awful. I'm sorry for your pain. I see your message is from 2024.
Paul

Not really. It’s so hard because the pain comes and goes. I can never figure out why? Is it the weather? My mood? For awhile I was getting nerve blocks in my toe, ankle, and knee. Honestly, the Novocain seemed to help more than anything. Once, a doctor prescribed steroids and it seemed to work and I was so excited. But repeat doses didn’t seem to have the same effect. I even tried that new non-opioid drug, Journavx but that didn’t help either.

@steveschem - how are you doing? I recall you said you'd been told your condition will never improve or change. So, just wanted to know if indeed you are staying the same or if you are seeing any change in your sensory feedback?