 I will try to explain the progression of my spinal problems and medical conditions. It is a bit confusing. I was born with a mild case of cerebral palsy. I was able to walk without any assistive devices and had full use of my arms and legs. I have a hearing loss and a slight speech impediment. I was totally independent. Went through my schooling and worked all my life. I was able to ride a bicycle. I learned to drive an automobile and I was married and have a daughter. My life was normal; I played in a band for about six years in my early life. For about six to seven years before total disability got me, I freelanced as disc jockey.
In 1975 when I was 21 years old. I had a spinal fusion and I made a complete recovery and resumed a normal lifestyle. My serious problems began about 1993. I had surgery to remove part of the myler sheath that covers the spinal cord because it was putting pressure on the spinal cord. After that surgery I had to use crutches to walk. But still able to work and earn a living. At that time, I had an H.M.O. insurance policy and my primary care doctor would not refer me to a specialist and did not get adequate medical treatment soon enough - in my opinion. Then beginning December 1995 and into 1996 I had two spinal fusion surgeries and one surgery to clean out a staph infection. The first surgery used a plate which cracked, the second a bone graft. After rehab, wearing a halo, time in nursing home for 3 months, I came home wheelchair bound, but with the use of my upper body. Things were pretty good for a while. This is around July 1996. At this point, I could no longer work earn living. I was going downwards very quickly and had to go on Social Security Disability. In between this, I lost my wife. On July 3, 1999, an automobile while walking crossing a street hit her. She died instantly. Then in the summer of 2000, I noticed I was losing some of my upper body abilities. January of 2001 started undergoing medical test. We discovered my vertebrae were moving back and forth unnaturally and if I didn't have further surgery they would eventually put so much pressure on this spinal cord that my breathing would stop. I had surgery on April 6, 2001 but they couldn't finish it because they nicked a blood vessel. I was on a respirator over the weekend and they completed the surgery on April 9. The surgery consisted of placing two titanium plates and screws on the left and right sides of my spinal column. I had a halo and rehab and then came home on May 12. 2001 Things were fine for a week. After a very difficult physical therapy session at home, I felt pain and the neurological symptoms returning. On May 30, 2001 they discovered the left plate had cracked. I had another surgery to replace the cracked plate. After that I had to wear a Halo Brace to support my head for six months. During that time I also had to have another surgery to clean up another staph infection. Then in late December, 2001, the right plate and screw pulled away from the skull and the opening caused another infection. I had to have another surgery. This time they removed the right plate but did not replace it. The doctor felt the remaining plate and bone growth should provide enough stability. When I came home in January of this year (2002), I had I.V. antibiotics for 6 weeks. Now in April 2002 the skin around my only remaining plate and screw began to wear away. The screw poked through. So this was cleaned and stitched. I was on IV medication again for 8 weeks to clear my infections. This brings us up to date as of May 2002. August 2002 all remaining Plates, Screws, and Hardware have been removed. The Surgeon hopefully felt I've had enough bone growth in my cervical area now to support it-self. Things were going along ok in the years leading up to 2007. Except for nursing a bunch of open sores, that I received on both legs, due from having to be confined in a wheelchair now 100% of my time and spasticity causing my legs to jump and cuts to form. Retaining water, drainage and swelling made it almost impossible to heal the sores. Infections were coming on more frequently and antibiotics would eventually will stop working and not do the job. I even contracted MRSA one time. I had to make a decision. If the infections kept reoccurring, I would eventually become septic and die. Amputation of both legs was the only way to prevent this. This decision was not too hard to make. Since, I had already not been able to walk and confined to a wheelchair since 1996, the amputation would not change my lifestyle, but it would save my life. I had both legs amputated above the knee in July of 2007. Since then I have not had any infections. My health has been good. This is my update for now. Thank You for visiting and reading. Sincerely, Edward Janus | Disability Advocate and Activist
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