From:"Maureen Weinberg" moe825@optonline.net
Sent: April 4, 2007

Approximately 1974, I was about 20 years old and noticed that I had black and blue marks on my legs. A physician’s examine included sticking me with a pin on different parts of my body. It was realized that I had numbness on the right side of my body that was separated by my spine. The black and blues didn’t turn out to be anything.

I was admitted to the hospital and after a number of tests, including a mylegram, I was diagnosed with MS. I was informed that I had a lesion on my spine and should be followed every six months. I went back for my six-month check up only to be stuck with pins all over my body again. I decided that I didn’t need to do this every six months, if there was a change; I’ll make an appointment then.

In 2000, I had pain in my one shoulder and limited range of motion and made an appointment with an orthopedic. Because there was some pain radiating to the neck, an MRI was ordered. At that time the “lesion”, that I had been living with for so long, was given the name “Cavernous Angioma”, located in the spinal cord at C2. The pain in the shoulder turned out to be adhesive capsulitis with physical therapy as the remedy.

Since the CA diagnosis, I have been followed by a neurosurgeon every two years. This year I have a new symptom. I woke up a number of nights with an intense itchiness on my left thigh. A few days later, I noticed that my left outer thigh is numb. This numbness is a completely different feeling from the right-sided numbness. The left sided numbness feels like it’s on the outside, while the right-sided feels like it’s inside the body. Although the neurosurgeon does not see a change in the CA comparing this year’s MRI to the MRI from 2 years ago, there is a clinical change and he wants to see me every six months.

My concern is that if I do require surgery one day, my neurosurgeon has not removed CA’s from the spinal cord. Although he performs stereotaxy surgery and does remove tumors of the spine, should I assume he could perform the removal of a CA in the spine? How do I locate surgeons that have removed CA’s from the spinal cord and the outcome of them? How can I find out how many patients have had this procedure and what their outcomes have been?

Looking forward to hearing any and all opinions.

Maureen Weinberg