Share Your Story; Donna Corley; Arachnoiditis
Donna Corley is a 43 year old mother and grandmother. This is her story of how she developed Adhesive Arachnoiditis.
In 2009, I had a bad fall, and landed hard on my tailbone. Two weeks later, the pain had become unbearable in my thoracic and lumbar area that I could not stand, sit, or walk without massive pain. I made an appointment to see my Primary Physician in which she ordered an MRI. A few day’s later the nurse called and told me I had Tarlov Cyst Disease. I continued to work, but the pain progressed, and so did my symptoms.
As my symptoms increased, I began to research for the symptoms I was having like, burning down my spine, down through my hips, all the way down both legs into feet, the sensation of bugs crawling on my legs, and walking on broken glass when I would try to walk. In 2011, I was forced to quit my job, and file for disability, because the pain had became so bad that I could no longer work. In 2013, a good friend suggested I send my MRI’s to a well renowned doctor who has researched Arachnoiditis for over 20 years, because my symptoms were closer to Arachnoiditis than Tarlov Cyst Disease. I sent him my MRI’s, and 5 day’s later I received the call confirming I indeed have Adhesive Arachnoiditis. The cause was from a car wreck in 1989, when I broke 3 vertebrates in mid thoracic. I was in the hospital for 8 day’s, and was never told this had happened. Not only was it in my thoracic, but also in my lumbar, from two epidurals in 1992 & 1995 with the birth of my 2 boys. Again, I was never notified that my spinal cord had been punctured during both injections.
I was diagnosed in March 2015, with Chronic Regional Pain Syndrome (CRPS/RSD).
My life will never be the same again. I can not drive anymore because I can not sit for long. I sleep 3-4 hours a night because the pain. Most of my days are spent laying down, or in my wheel chair. I have to lay down every 2-3 hours to help CSF (cerebral spinal fluid) better flow to my brain because of the scar tissue inside my spinal cord canal that hinders the circulation of CSF flow in my spine.
I have lived 26 years with Adhesive Arachnoiditis, and it has taken me 24 years to be diagnosed with Adhesive Arachnoiditis. #MakeADifference #ShareYourStory #Arachnoiditis #julyARACHNOIDITISmonth
2 comments
I was 31 when I had an oil-based dye myelogram prior to a laminectomy. I was finally diagnosed in my late sixties. I finally understood why I was unable to walk without severe pain at times during the intervening years and why my back gave me problems. I cannot fathom why spine specialists, including top neurosurgeons, were unable to diagnose my Arachnoiditis Ossificans were not able to properly diagnose my condition before I was finally gently informed by neurosurgeons at Northwestern in Chicago that the myelogram oil-based dye had never left my system but had gradually infiltrated nerves, muscles. ligaments, bones, and scar tissue creating what the neurosurgeons described as a “bowl of dried spaghetti.” I realize that I will be forced to live with unnecessary suffering for the rest of my life because the medical profession refuses to acknowledge this condition and, in fact, still encourages mothers-to-be to have steroid spinal injections prior to giving birth–without first warning them of potential consequences.
It is truly discouraging how Arachnoiditis is unreported by medical professionals. Sadly, there are many people who are totally unaware they have Arachnoiditis. I have not been able to get properly assessed, but I developed nerve root clumping on the L5-S1 and was diagnosed with “Acute Arachnoiditis”. Unfortunately the severity of my symptoms has increased and manifested into days and nights of terrible torment. A lot of the medical community, including neurosurgeons and radiologists do not recognize it, or want to recognize it. Epidurals, punctures, myelograms,… are big business. I had a bad spinal tap at the age of 52, but it was a blood patch procedure to correct the puncture which caused my nerves to clump up. So far, no doctor has guts in Oklahoma to address it or they may be just clueless on the condition.