Syringomyelia/Syringobulbia

The story of Stephanie

I was diagnoised with Syringomyelia and Syringobulbia in 2009. I will always remember the day that I went to hang up a jacket and I dropped to the floor. Never felt that kind of pain before in my life. Had to take the week off of work and get my husband to come home and help me to bed. I went to the chirproacter thinking I pinched a nerve in my neck and we worked on it for many months but symptoms just kept on getting worse and adding up. Weakness/Pain in legs, Migraines, arm weakness/pain, felt like my whole spine was being crushed, the fatigue was hard, especially when you have a busy job. It just didn’t get better.

Had xrays, CT Scan, multiple MRI’s, Bone Scan, etc. Although we did find other diagnosises, my MRI’s showed that I had Cerebal Spinal Fluid building up in my spinal chord. My worst area being C5 – T1, and T7-8. We also found that it was slowing building up towards my brainstem. When I saw the first Neurosurgeon, I felt like they were not understanding of the diagnosis, and when I questioned how many cases he had seen, he got very defensive and left me in tears with the door open for everyone in the waiting room to see. So I asked my GP for another opinion. I moved to Vancouver to get into the healthcare area and this allowed me to see a top Neurosurgeon in BC. By this time I was off on Short Term Disability through my employer in hopes that I could find that one Doctor that could “fix it”. Little did i know that this was not a possibility.

The Surgery needed for these disorders comes with a very high risk. The success rate of surgery sits at 20% and most times the patient is left in worse health than before. I have seen countless times of people getting these surgeries done and that was the final straw that put them into wheelchairs. That was something I never wanted to happen, so we felt it was best to take the “wait and see” approach. I even went to a third Nuerosurgeon and was explained the same thing. Now, 10 years later, I’m glad we took this approach. 

I have tried basically every medication for the symptoms that arrise from these issues, and I honestly feel it made things worse, just due to all the side effects that these kind of drugs have. So I switched my diet and starting using Cannabis as my medicine in 2014. I had always been a recreational user but after a considerable amount of research, I found that it was used and was successful for chronic pain. It also helps with inflammation, so why not give a plant a try. 

Now, its 2020, and although I still have these diseases, there has been no change in both diseases. They have remained “stable” I did do a lot of adjustments to my life, I no longer work, most sports are out of the picture, I take me days one moment at a time, I allow myself to rest without feeling guilty for it and I am manageing the pain a whole lot better. I finally feel like “I’ve got this”. Cannabis is not a cure for this type of disease, but it does help with the symptoms of pain, the nerve pain, the stabbing pain, the feeling like the spine is crushing. It’s finally “manageable”.

I truly hope one day we will see a cure for these diseases, but on a good note, you can live with them. You can have a somewhat normal life. And most of all, it will be okay.