I had a brain surgery (craniotomy and endovascular procedure, after failed embolization) for an aggressive intracranial dural arteriovenous fistula (Cognard type V, Borden type III) on my spinal cord, from the cervicomedullary junction to C7. It was an emergency procedure, therefore everything went fast and I didn’t have much time or choice.
Because of Covid19 and/or red tape issues between provinces (I live in Quebec, Canada, but had surgery in Ontario), I ended up with no rehabilitation services after leaving the hospital. Even though I applied to a provincial rehabilitation program and was accepted, I was on a waiting list, which means that I didn’t receive any help until my Life insurance provider accepted to help me. My first official rehab plan started 8 months after my surgery, in late August 2021!!! And no neuro specialist was in charge of my case until May 2021.
Like you, I have leg weakness. I don’t know if I have spasticity, but I do have strong spasms in the morning or during the day if I’m tired or do too much. I also had to learn how to walk again, but on my own. So I turned to Youtube and watched videos of rehabilitation centers, yoga and Pilates exercises to help with flexibility and mobility, because I knew that it was critical for me to move if I wanted to facilitate the creation of new nerve pathways, since my spinal cord had been injured. It is said that the first 6 months are very critical in the recovery phase, and most improvements are made during the 2 years post surgery, even if improvements can still happen afterwards.
When I got home after the hospital, I used a walker at home for 2 weeks, then a cane. After a month, I could walk inside the house without anything. However, walking outside is different and always required walking sticks (for long walks in nature) or a cane in public places. Now, I can sometimes walk without my cane in public places when I don’t have to walk or stand for a long time. My progress was plateauing in May and I had started to become discouraged…Therefore, I researched new ways to help me, and I did this:
- I bought a whole body vibration plateforme (I did a lot of research and I made sure to use it at the lowest intensity and for just a few minutes until my body got stronger)
- I started to go to my local swimming pool in July to help with muscle strength in my legs: I have to use fins and a board, otherwise I can’t move much in the water. It was difficult the first 2 weeks, then it became easier. I don’t feel pain when I swim, unless I’m already tired. The absence of gravity helps a lot.
- I started to see an acupuncturist for my bowel and bladder issues.
And in late August, my Life insurance provider gave me access to a kinesiologist, a rehabilitation physiotherapist and an occupational therapist who have been helping me a lot.
It is very important to stay positive despite the pain and the difficulty due to our condition, because our mental state, as much as our physical state, impacts our progress. So, don’t be discouraged, keep going. You will get there at YOUR own pace.