AVM 1985

[Steve]

I am not one to look up my medical history on the web, but being bored today, I have done just that!!! My story is long, but I will try to keep it to the point.

I was 14 years old when I first started experiencing symptoms of AVM's. Naturally that is not what we THOUGHT was the problem at all. It started out with my limping on my right leg slightly in April of 1985. My parents took me to a podiatrist who said it was an ortho problem. Off to an ortho, HE said nothing was wrong with my bone structure and said it had to be neurological. THAT is scary! By now it is Sept, and I am limping VERY noticiably on the leg. In fact, I had to use a wheelchair in my freshman year of high school because I was falling on a regular basis. **Note that at this point, I could still get up and walk when I needed to, just not too far.

I go to see a neurosurgeon who was MYSTIFIED by my problems. We all know how THAT feels. My entire life from that point on I would hear "this is highly unusual" or "you are a very rare case". I had a CAT scan done right then. After spending 8 hours in his office (yes I said 8 hours) he referred me to St Luke's hospital (now Rush) here in Chicago. There I would undergo a bantering of testing to see what my problem was. They suggested a new technology the MRI. The first test showed a clouded image, but surely something was on my spinal cord. But what? More tests: myleograms, angiograms, topography, and finally another MRI. A week later they discovered I had AVM's on my spinal cord. Not just one, but EIGHT. They trail down from the base of my neck basically, to the middle of the cord. They were bleeding and causing the now almost paralysis of my leg.

It was now Dec 1985. I could barely stand up and walk a few feet without falling over. My dad had to hold me up whenever I had to walk. I was not in school for the entire month of Dec. The holidays were bizarre. I remember phone calls to and from hospital, doctors, clinics etc. all trying to figure out how to treat me. My medical records were sent around the world to find a doctor. Mayo clinc rejected me saying I was too risky. FINALLY on Dec 31st, we had a doctor!!! He was practicing in various countries, but also practiced at University of Chicago. We met with him and he suggested a procedure called an embollization. This would cauterized the main AVM in my neck from bleeding into the others, thus stopping the progress of the damage in it's current state. NOTHING was going to come back, but I would not get any worse. The procedure was risky since I was so young and came with many scary warnings. Without the "surgery" I would certainly be left completely paralyzed, as the AVM's would take over my entire body function. Those scary papers about the doctor not being held responsible for my death came into play.

I was set to have the embollization done Jan 24th 1986 at U of C. I have to say I was not scared, as I knew I needed this procedure. The thing that WAS cary was the fact that because brain function needed to be monitored, I could not have anesthesia. I was WIDE awake. There were doctors brought in from EVERYWHERE to watch this procedure. They stood staring at me from behind a glass wall. I'd say about 25 -30 of them. The surgeon explained he was going to insert a tube into the main artery near my groin, and then inject dye to see where the cauterization material should go. I can't say for sure, but approx 30 minutes into the procedure, I became VERY hot and dizzy. I felt terrified as I screamed for them to stop. the next thing I remember, I woke up on what I thought was life support. I had tubes everywhere, monitors stuck to me, inflatable bags on my legs, I'V.'s up and down my arms. I was also left with the inability to move ANYTHING, speak or see out of my right eye. My spinal cord had swollen up to about three times the size. No one know exactly what happened. the doctors say the procedure went fine. they attribute my reaction to my age and the severe trauma. We will never know.

I spent 2 1/2 weeks at U of C trying to get back some of my function. Luckily, my speech/eyesight came back with absolutely no problem within a few days. My hand/arm function was very weak, but promising. My legs however, were totally paralyzed probably for good they said.

I was transferred over to Rehab Institute of Chicago (RIC) There I lived for 4 months. I was able to regain the strength in my arms up to nearly 95% over this time. My legs never showed signs of progress. I worked or learning to dress, feed, toilet, and care for myself all over again like a child. Bladder and bowel function were a MAJOR issue, as I know they always are for spinal cord injuries. Once I learned to manage that, life was easier.

I was discharged on a Fri in May. I went right back to school that Mon. The school was not exactly wheelchair accessible, but my parents and the school made it work. I went to summer school, and was promoted to sophomore right on schedule.

I am now 37 and have had no direct AVM related problems since. I am in a wheelchair and am paralyzed from the waist down. This has not stopped me from getting married to my husband of 6 years, working or traveling. I also have two service dogs to assist me. One is semi-retired and the other is his replacement.

Please email me if you have any questions or concerns. I currently work in a hospital with my dogs in the spinal cord rehab unit. The dogs do PT, OT and speech therapy with the patients. I work with therapists to provide support with transfers, driving, dressing and general counseling to the patients.