Valorie
CyberKnife Patient Support Group

Valorie’s Arterio Venous Malformation

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I have an Arteriovenous malformation, AVM, with four feeders that is located inside my spinal cord at cervical 2 & 3. An AVM is a mass of veins and arteries that lack a capillary bed. The AVM has bled three times: 2/1/69 age 13, 3/28/87 age 31, and on 5/6/96 age 40.

I was treated with the CyberKnife on the following days: 7/24/97, 7/30/97, 7/31/97 & 8/1/97.
Three years later on 8/16/00 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.


Valorie’s AVM Story

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. 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 awhile 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 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, at age 31, 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 Dr. Lawrence Shuer at Stanford 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 Hospital for check ups, MRI’s and angiograms. There was still no hope for me. Then in May of ’96, at age 40, 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 Dr. Shuer gave my test results to a meeting of doctors regarding difficult and rare cases and luckily Dr. John Adler Jr., Neurosurgeon, saw my case.

In August of ’96 I met the most wonderful man on earth, Dr. John Adler. He is extremely intelligent, charismatic, witty and sensitive to those around him. For the first time in my life he offered me hope of being cured of my AVM. He told me about the incredible CyberKnife and it’s non-invasive treatment. At that time Stanford’s CyberKnife was not in use so my husband and I flew to the Newport Radiology Center. Dr. Adler met us at the center and was like my knight in shining armor. He explained things clearly to us including the difficulty that I had with the immobilization device. Apparently it was in the way of my AVM and the CyberKnife and would have to be replaced with something else. We flew back home to wait. At the end of August Dr. Adler called and said that the Newport Center doctors turned me down because they felt that my condition was too difficult for surgery. I was devastated. They didn’t understand how risky it was for me to NOT have surgery. Dr. Adler reassured me that he would help me as soon as he found a physicist and Stanford’s CyberKnife was up and running.

The day finally came. On July 3, 1997 Dr. Adler with his team began preparing for my surgery. My experience with the CyberKnife was awesome! With the CyberKnife being relatively new, 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. Nalani Brown, Surgical Specialist, was my lifeline to sanity. She took exquisite care of me, and was reassuring, gentle and sensitive to my needs. 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. The hardest part of the surgery was overcoming my own fear.

I took it easy the next three years, with no side effects from surgery. 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. Dr. Adler, Nalani Brown, Dr. Chang, Dr. Hancock and Dr. Martin were smooth operators and kept me smiling. I feel 100% secure with this wonderful team of brilliant people. The CyberKnife has been my beacon of hope to live a normal life without fear of paralysis. Hopefully my AVM will be gone for good in two years and I will no longer be a walking time bomb!

Update on May 26, 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 on the link listed below, 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 on August 15, 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

To read my medical case study by Dr. John Adler please click here

News articles:

Stanford Report July 25, 2001: "Patients gather to praise minimally invasive technique used in treating tumors"

 

Ateriovenous Malformation Information:

For information regarding AVM please visit the CyberKnife Society

(That’s me in the MRI’s and angiogram pictures of "CyberKnife® radiosurgery of a spinal AVM")

 

Your comments are welcome, email me at www.valoried@comcast.net


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