Six Months ago CMS (conus medullaris syndrome) was diagnosed. It was really difficult to get diagnosed properly. Some symptoms are similar to CES but not identical. This has frequently led to many unusual complications. E.g. many doctors think that all or at least many of my symptoms are made up. (hysterical paralysis - wee!!!)
But my neurosurgeon has done the diagnostic investigations very carefully.
CMS seems to be a very rare condition. And it is even crazier than CES.
Thanks for the information. My symptoms follow the cauda equina also. My diagnosis is Chronic Arachnoiditis with a cyst between the levels of L/2 and S/2. I have learned more on this forum than my Dr even knows about spinal cord injuries.From what I have learned the cyst is inside of my spinal cord between those levels. I was shown the MRI and it looks like everything is pinched to the side inside of my spinal cord pretty much from those levels, everything was stuck together is what the Neurosurgeon said.
Post by kilg0retr0ut on Dec 29, 2016 17:18:14 GMT -8
Good info. r0hbart, Very similar symptoms. Even among CES'ers symptoms vary. Not fun to be diagnosed with something you never heard before, even harder when the medical staff in you area hasn't either. I'm glad your Neurosurgeon is on top of it. Since our injury's are similar, maybe some of what we've learned may help. What have they recommended you do?
- Physiotherapy. Rebuilding some muscles. - Gait training. Unfortunately using crotches or a walker puts too much stress on my shoulders. - Bladder stimulation.
Post by kilg0retr0ut on Dec 30, 2016 11:08:21 GMT -8
So does this affect your upper body as well? Firing all the muscles you can is very important. I hope you find a good P.T., core muscles are huge. All you can do is put in your best effort, while being safe. I started with a foley indwelling, with my bag hanging off my walker, so I didn't have any stimulation, would be interested what kind of procedure they recommend. They had a belt around me during gait training, and had me between parallel bars. It's early on, you will improve. Wish you well in the New Year
I had ruptured a couple of disc working in a machine shop. Had back surgery, was paralyzed from the waist down for a couple of years. Got back on my feet but was still having pain and problems with my back and legs, severe cramps. Had many spinal taps, Myelo grams and epidural blocks. I have been dealing with this since 1976.
Hi conusmedullarissutv. Glad you tound us. Please do fill in some details on your profile. Are you an 'incomplete' with some function below your injury? Can you walk or are you in a wheelchair? Have you been active on other forums?