My Experience with Spinal Cavernous Malformation


From:"Norvina N. Sage" norvina.sage@muddybike.com
Sent: October 7, 2003

My name is Norvina. I am 27 yrs old and reside in the Bay Area (California).

In May 2002, I woke up one morning with this awful back pain mainly concentrated in the upper portion of my back. I also noticed that along with the pain, I felt that my skin (where the backpain was) was "sensitive" to the touch - it was as if I didn't want my clothing touching/rubbing up on it. For two days this pain and sensitivity lingered and by the third day, I noticed the entire left side of my trunk area (both front and back) were numb! Knowing something was terribly wrong, I went to the E.R. at a local hospital where I was told - without any MRIs or scans - that I had M.S.! Devastated, I saw a neurologist a couple of days later who suggested an MRI(thoracic area) to see what was really going on.

After the MRI, my neurologist told me I didn't have MS, rather I had a tumor that was actively bleeding in the spinal cord (T1-T2) & that I needed to see a neurosurgeon right away. A week later I met with a neurosurgeon who looked at the MRI and told me he didn't think I had a tumor but some kind of a malformation. He then referred me to neurosurgeons at UCSF Medical Center.

The neurosurgeons there, by looking at my MRI, thought I must have an AVM so they scheduled me for a spinal angiogram in June. The results were negative - - I didn't have an AVM. Now they were back to thinking I had some kind of tumor. I was so confused, so angry, and so scared at this point because no one seemed to have known what was wrong with me. This was late June and by this time, the pains were sharper & constant- keeping me up at night, my left leg and toes were numb and the sensitivity on my skin was horrible! It actually hurt to have any fabric or clothing rubbing or touching it. Needless to say I was losing my mind.

Before making any decision for surgery, I convinced the neurosurgeon to do one more MRI to see if any changes may have occurred. That MRI was done on July 8, 2002. The surgeon called me 2 weeks later and told me I had a spinal cavernous malformation. I had surgery, performed by Dr. Michael Lawton, one week after my 26th birthday on Aug. 12th. The surgeon later told me that the malformation was literally sitting right on top of the spinal cord and that he "scooped" it all out. I was in the hospital for 5 days - started physical therapy in early October and that went until the beginning of January 2003. To this day, I still have numbness on my left side but the pain has been long gone. I still do have hypersensitivity on my left trunk. Every day I try to accept that I may feel this way for a while, but I have hope that one day it will get better (as far as the sensitivity goes). I am back at work & actually decided to go back to school at UCSF to obtain my Master's degree in Nursing.

Thank you for allowing me to share this with all of you.

Norvina N. Sage
SF Bay Area, California