New treatments for recovery post-hemorrhagic stroke?

Posted by djs2023 @djs2023, Sep 3, 2023

I just joined this group and this is my first post. I had a hemorrhagic stroke in January of 2014, due to a dripping brain aneurysm. The aneurysm ruptured during the coiling procedure, which left me paralyzed on my left side. I have regained use of my arm and hand. I can stand and walk unassisted a few steps and walk very slowly with a cane. I do better with the cane if someone is also holding my hand. I have spasticity on my entire left side and in some areas in my right side. I've been receiving Botox injections every 3 months for 7+ years. I tried Dysport for 1 years, but I felt ill for the entire year, so discontinued use and went back to the Botox.
I have been diagnosed with arthritis in my left hip and my neck. I have limited range of motion in my neck and for the last year have been experiencing significant pain radiating from my neck down my back and my arms. I also have a bulging disc in my neck and one in my lower back. Currently I see my chiropractor 3 times a week and use a neck decompressor. This has helped somewhat.
In June of this year I began the stem cell process for the arthritis in my hip. I've received several plasma injections and one stem cell injection and the improvement has been great! The pain in my hip is gone and the muscles are so much softer in the hip and upper thigh. I couldn't be happier with the results.
I had been hoping to also receive stem cells for my neck but because the arthritis is in the first 3 vertebrae the place I went to would not treat my neck.
This pain is sometimes so debilitating and can last for hours. It seems to last longer now than when it first began.
After the stroke my doctors told me that the only pain medication I was allowed was Tylenol. This isn't exactly ideal for my current situation.
I'm a registered volunteer with the All of Us Research Program, which is a national program. I am willing to volunteer and help anyone who has been afflicted from a stroke, but most clinical trials for stroke are not for hemorrhagic stroke and also want you to be a few months post stroke. I'm 9 years post stroke. I belong to a stroke survivor support group on Facebook too. Due to my experience with these groups I cannot express enough that stroke recovery does not stop within the first few months or the first year!! I continue to improve, but I'm getting older and I could really use some additional help from the medical community. My parents both lived into their 90s so it is not irrational for me to think that I could have an additional 30 years ahead of me if I could move properly.
Three years ago I had an amazing 5-6 hours of walking normally. Everything worked except my toes. I couldn't wiggle them or stand on my toes, but at this point they had only recently begun treating my foot for spasticity. Since then I've regained more feeling in my foot and toes but still am unable to flex my foot, move my ankle from side to side, do plantarflextion or move my toes.
My husband accidentally struck my toe and it sent a radiating pain all the way up my body to my neck and the lights went out on my ability to walk normally. Back to the cane and labored walking.
Anyway, I know it's within me to be able to walk normally, I just don't know how to get it back.
A year ago I had an MRI of my brain. I met with the Director of Neuro Sciences to go over the results. My brain is perfect (his words). The bleed from the aneurysm is gone, the coiling is perfect, there is no sign of the stroke on my brain. He then looked at me and said, "Your brain is perfect and I have no idea why you aren't walking."
On one hand that was wonderful news, but on the other??
So what am I supposed to do now? Are there any other treatments that I haven't tried? I've also done acupuncture and massage therapy.
Thank you for reading this long post.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Please sign in or register to post a reply.