I have an AVM with four feeders that is located inside my spinal cord at cervical 2 and 3. The AVM has bled three times: age 13, age 31, and age 40, (I'm 45 now). I was treated with computer mediated sterotaxic radiosurgery with the non-invasive Accuray Cyberknife when I was 41 yrs old. Three years later I had a MRI and angiogram where it was determined that my AVM shrank approx. 75%. I was still at risk to suffer additional bleeds along with the resulting neurological damage and was advised to have a second treatment with the Cyberknife on 9/28/00 and 9/29/00. I will undergo tests this summer to find out if my AVM is gone for good.
In Feb, 1969 my AVM bled for the first time. I was washing my hair in the kitchen sink when suddenly I felt extreme pain on the back of my neck and between my shoulder blades. It was as if someone kept stabbing me with a knife over and over. Next, my neck felt as if it was on fire and my body shook with spasms for about an hour. Finally, the right side of my body went numb. My parents thought I had thrown a vertebra out in my back. After several days with no improvement they took me to see a chiropractor. He tortured me for a while and then advised my parents to take me to a neurologist. On my 13th birthday I checked into the hospital and was put into traction. The nurses had a hard time adjusting the chin and neck straps on me and I was miserable with tears of pain streaming down my face. In the next week I was poked, prodded and pinched and then given a spinal tap. The results showed bleeding in my spinal cord and the doctors wanted to perform exploratory surgery on me. They said that my right side would be paralyzed for life. My parents rejected exploratory surgery and took me home. Over the course of a year I recovered from the bleed and tried to live as normal a life as possible, always with a dark cloud of uncertainty hanging over me.
In March 1987 I had a second bleed. I was playing with my one-year-old daughter in the front yard when I felt that familiar stabbing on the back of my neck. I quickly called family for help and then lay down on the couch while my right side once again fell asleep. This time technology had advanced to where I was given a MRI scan. The doctors put a cervical collar on me and put me on steroids. They said I had an inoperable AVM inside my spinal cord at C2 and C3. It would leave me paralyzed for life if they tried to remove it so there was nothing they could do to cure me. They thought that I would not regain use of my right side and advised me to not get pregnant again, keep my blood pressure down, and avoid stress. I was referred to the neurology department at Stanford Medical Center,(Palo Alto, California), for a second opinion, which was the same as what all the other doctors had told me...no hope.
For the next eight years I lived with my pain. My right side never fully recovered. I had constant headaches and an ache in my neck as if a stack of books sat on my head, always the feeling of pressure. I faithfully returned to Stanford Medical Center for check ups, MRI's and angiograms. There was still no hope for me. Then in May of '96 I had a third bleed in my spinal cord. This time I was merely lying on the couch watching TV. Like before, I experienced the same symptoms, was given the same tests and told the same diagnosis. Nothing could be done. Eventually my test results were reviewed by Stanford doctors dealing with difficult and rare cases and luckily Dr. John Adler Jr., Neurosurgeon, saw my case.
For the first time in my life I was offered hope of being cured of my AVM. Dr. Adler told me about the incredible Accuray Cyberknife and it's non-invasive treatment. The computerized robot would be programmed to target in on my AVM and shoot radiation from all different directions with minimal risk to the area around my AVM. On July 3, 1997 Dr. Adler with his brilliant team began preparing for my surgery. I had an angiogram and MRI with dye contrast. With the Cyberknife being relatively new (used to treat brain tumors thus far), and me being the first patient to be treated for a spinal cord AVM, there were certainly "bugs" to work through. When I first saw the Cyberknife it looked like something out of the future space age. It was slightly nerve wracking seeing the floor and ceiling panels torn up and wires everywhere and was amusing to see the team of doctors running around with screwdrivers in their pockets! I was definitely a challenge for the team. They had to figure out how to image me because my bones were not normal due to the abnormal spinal cord around the AVM. But perseverance must be Dr. Adler's middle name. They succeeded in overcoming all obstacles in the way. The immobilization face mask was only slightly uncomfortable and I liked being able to see through it to watch the Cyberknife. I didn't feel the radiation at all and time went by quickly. I had about an hour treatment on four different days. After each treatment I got up, walked out of the building and went to have lunch with my husband. I did not suffer any side effects at all! The hardest part of the surgery was overcoming my own fear.
I took it easy the next three years gradually getting back the use of my right side. Then in August 2000 my MRI and angiogram showed 75% shrinkage to my AVM. The surgery had worked but I still needed to get rid of that last 25%. The following month I had my second bout with the Cyberknife. I could definitely see the improvement made on the procedure, everything went smoother and faster. This time I only needed two days of treatment. The Cyberknife has been my beacon of hope to live a normal life without fear of paralysis. Hopefully my AVM will disappear forever and I will no longer be a walking time bomb!
Update: 26 May 2003
It's hard to believe that almost three years have passed since my last CyberKnife treatment. I am doing great! I have not suffered any more bleeds or any adverse side effects from the CyberKnife treatment. In September 2001, I had an MRI with dye contrast. The results showed that the AVM was continuing to shrink. Prior to treatment my AVM was about the size of my thumb. In September 2001, it was approximately the size of a pencil eraser. (The Discovery Health Channel recorded my story and MRI results in a program called "Super Surgeries" which aired last year. To view this program click here, and then click on the video "Discovery Channel-Health" )
I am having my 3 year post treatment Angiogram done at Stanford Medical Center on August 15, 2003.
Update: 15 Aug 2003
It's been six years since my first CyberKnife treatment, three years since my second treatment, and I have fantastic news. My angiogram showed a huge change in my spinal cord AVM! Six years ago it was the size of my thumb and had 4 feeders. Now it is the size of my baby finger nail and only has 2 feeders. Also, the smallest and most dangerous veins that are susceptible to bleeds are gone! My spinal cord surrounding the AVM is no longer extremely "fat" or misshapen like it used to be. I am so thankful for CyberKnife and everyone who's involved with it! To see MRI scans and the angiogram of my AVM click here.
For those of you who would like additional information regarding the CyberKnife please visit our nonprofit organization "CyberKnife Patient Support Group"