My Doctors Didn't Know What It Was


From:"Chris Safford
Sent: January 29,2004

It was Sept. 1984. I had just gotten off a cruise to the Bahamas, I started with a sore throat for a few days, then nothing, then nausea & vomitting. I felt dizzy and started to twitch. This went on & off for a month. I was admitted to the hospital for 5 days, had a CT scan, lumbar puncture, all of the usual tests. The doctors didn't know what I had, so they diagnosed me with left sided hemi chorea, which is terminology for a dance like movement of the arm and hand. My leg & foot dragged & my speech was slurred (dysarthria). This lasted until January 1985. Then from November 1985 to April 1986 it started again, except that in March the movement decreased to just in my thumb. At that time I was in nursing school & my teachers discriminated against me, trying to outsmart the doctors. I wasn't having seizures.  My doctors didn't know what it was. I was so depressed that I ended up on the psychiatric ward for depression. While there, the shrink sent me for an MRI, which showed the caverrnoma, but my doctor didn't have the written report & when he looked at the x-ray, didn't recognize the angioma. That was January 1986. It took a car accident in Sept. 1986, physical therapy, which wasn't helping, an angiogram & more MRI's for my neurologist to send me to the neurosurgeon. That was in July of 1987. It took three years for them to figure it out. At that point in time, it was called an AVM, which is Arterio-Venous Malformation. I was diagnosed with a cryptic, cavernous angioma in the right head of the Caudate Nucleus, bleeding on the basal ganglia, which controls movement. The only choice I had at the time was to have a Proton Beam treatment, which focuses radiation on the malformation & cuts it off from the feeder blood vessel & disintegrates over a period of time. It didn't work on me, because my malformation is venous in origin. It sort of helped, as I did ok for a few years. In 1992, I got another neurologistt, who is the department head, who has written about AVM's & is familiar with me & my condition. I was given a different neurosurgeon who, from 1992 to 1996, wanted to perform surgery on me. I kept telling him 'no', because where the malformation is, is close to my communication centers. Finally, in 1996, he said he couldn’t operate because of the reasons that I had previously given him.

So here I am, with dystonia, a form of chorea, dysarthria, a weak left side, also fibromyalgia, which is an immune disease, and have migraines. I know when I bleed, although my doctor said it wasn't actively bleeding during my last MRA, the radiologist said there was a ring of hemosidrin around the lesion, which is a by-product of blood.

Twenty-four years ago, I was a paramedic; I burned out, and then went to nursing school, when I first had symptoms. Then I tried to go to school to become a social worker, I couldn't do the practicum, because of my disability. Now I am married with a husband who seems to understand. I have consulted with quite a few doctors about surgery, but none of them will touch me with a venous cavernoma. All experts in the field. So I take my meds & wait until a cure can be found.

Chris Safford