Welcome Eva Bradshaw-Burnett

Please join us in welcoming Eva Bradshaw-Burnett of Delaware. Eva has Arachnoiditi and Cauda Equina Syndrome. She welcomes your email to rebma924@msn.com.

Eva says:

"I live in constant, no-stop pain. At times agonizing, screaming pain. It has become my friend. When I wake in the morning I know I am alive because I am in pain. I don't remember a time in my life anymore when there was no pain.
My life started it's downward spiral when I was diagnosed at age 10, and quite by accident, with sooliosis. I spent years in plaster traction jackets and in and out of the hosspital while the doctors attempted to reduce the curvaure of my spine. During my stays in the hospital I met a girl with the same problem as mine: but she had undergone surgery. At that time the orthopaedic community felt that it was only safe to fuse 3 vertebra at a time, waiting 9 months for the fusion mass to solidify, before going in again if more fusion was necessary. My caregiver did not actively participate in my medical condition, and I eventually had a letter drawn up to allow me to make medical dcisions for myself. I was 12 years old.
When the doctors felt that they had reached the best point of reduction and were ready to operate I refused the surgery. I knew that I needed, at the very least, 11 fusions done. This would mean 4 years in a hospital bed with no visitors. I had already gained a great deal of orthopeadic knowledge thanks to my doctors; who spent as much time as they could teaching me to read x-rays and getting as many other spine specialists to examine me and explain ther findings to me. It was discovered that I had had sciatica since I was 10 years old. I was home tutored for most of my education (by law), and graduated high school in the top 10 of a class of 1500 students.
My scoliosis was followed and was only progressing at the rate of 1 degree a year until I became pregnant. After giving birth, by C-section,and with an epidural, my spine progressed 10 degrees in 1 year and I was becoming paralyzed by spinal stenosing as well as pressure from my spine on my left lung. My first spinal revision, (there have been 7 in total) was performed by Dr. Stanley Hoppenfeld. At that time Dr. Hoppenfeld was considered to be one of the finest spine surgeons world wide. At the 1 year post-surgical check, Dr. Hoppenfeld never informed me that my L5-S1 fusion mass had failed. That was in 1976.
By 1987 I could barely walk and was refused treatment by Dr. Hoppenfeld because, "nothing could possibly be wrong." I was operated on again, this time by Dr. Jean-Pierre Farcy. Once again, a pre-eminent spine surgeon. My fusion mass failed again and, despite his sending me for a consult with Dr. John P. Kostuik, in Toronto, Canada, who advised Dr. Farcy not to op[erate on me again, (a fact that I was not made aware of at the time) Dr. Farcy did an anterior approach, having a general surgeon open my stomach for him, and once again the fusion mass failed. Now I had a mutilated stomach and more pain than ever. I was also diagnosed at that time with arachnoiditis.
Dr. Kostuik performed surgery at Christmas of 1990, in Canada. It was the 3rd set of hardware, the 3rd sciatic correction, but unfortunately, not the last surgery. Dr. Kostuik moved to the Johns Hopkins Medical Center, and 3 more surgeries were performed there; the last one in 1994. I became a water exercise and swimming instructor so that I could have as much water therapy as possible. I also took up T'ai Chi to improve my balance, which worked dramatically.I had follow-up visits with Dr. Kostuik and was aware that neurologic changes were occurring at a slow but steady pace. He is now, to my great misfortune, retired, though still teaching amd innovating new, less invasive instrumentation for the spine.
Then the neurolical symptoms changed suddenly. Just a few months ago. I suddenly felt like my left thigh was on fire. Then my legs began weakening, despite exercises to strengthen them. I diagnosed Cauda Equina Syndrome, which was confirmed by a neurosurgeon at Johns Hopkins. I was forced to use a cane and have now progressed over the course of a few weeks to needing a walker. I have already picked out the wheelchair that seems to be the next logical necessity if the downward spiral continues at it's current rate. I am waiting to find out if I a particual doctor finds me to be a candidate for a spine neural stimulator. Even if he does find me to be a candidate, I have 2 abdominal revisions that have to be made to fix the mutilation of my stomach that occurred during my 3rd spinal surgery. An outcome, which at the time, was considered to be an "accepable out-come" in the malpractice arena. The herniations of my abdominal wall as well as the poor closure have now made it medic!
ally expedient. Because of my vast experience with insurance companies I am a pro bono medical advocate for those who need one. I have never lost a case that I have taken on in 20 years, yet.
I can tell you where every marr in the ceiling over my bed is and how depressed and lonely I am at times. That without a computer I would have little contact with the outside world. I no longer live in New York, where I lived for most of my life. After close to 5 years in Delaware, I have found no friends or even aquiantances.
I can still walk, though I do lurch about a bit. I can drive a car. But with the limits that I have and my husband and ex-husband's help, and my cats, who are my constant companions, I still cannot get past the un-decribable agony that attacks when I least expect it."