Sharon’s inspirational story of life beyond cavernous malformations:
On Friday, Dec 5th, 2014 at the age of 42, I came home from work and as I sat on the couch I noticed a funny feeling in my back. By Sunday night I was in pain like I had never felt. I could not sleep and no over-the-counter pain meds helped. I got in to my regular doctor’s office on Monday morning. Being as she was not available, I saw the nurse practitioner. She almost instantly diagnosed me with having a pulled muscle and prescribed pain medication. I declined, knowing my pain was not muscular. I left in tears. On Tuesday I went to the E.R where again I was told I had pulled a muscle. I tried the pain meds they prescribed. No relief. Wednesday came around and I followed up with my regular Dr. By now I had some numbness in my left thigh and bladder retention. I was sent home with even more pain meds and told if I could not empty my bladder by the next day to call the office (UGH!!). I called Thursday morning and was told to go to the E.R. By the time I got there my legs were very wobbly. When the neurologist came in (I can still see his face and hear his voice) he said “You have numbness AND you can’t pee?” It gets blurry from there. I was sent for several tests, one being an MRI that showed swelling in my spinal cord. I just remember the neuro doc saying it spanned 8 inches of my cord. By Thursday night I had no feeling or movement from mid torso, down. I was originally diagnosed with Transverse Myelitis and treated for that with Plasmapheresis. After 7 treatments, there was no change in my condition. I was transferred to a rehab facility where I started doing research and making calls as well as sending emails. I had my images sent to two different hospitals and in doing that, received a diagnosis of a cavernous malformation at T8-T9 level. I knew it was a possibility because of my family history. Unfortunately, the hospital I had been admitted to dismissed me each time I inquired about it being a possibility. By the time I left rehab, I had regained significant mobility in both of my legs and my torso. But with the new diagnosis, I felt surgery was my best choice. On March 31st, 2015 I underwent surgery in an attempt to resect my cav. It was not successful. I spent another 9 months in rehab, only 1 week as inpatient. I have foot drop and weak hip and knee flexors on my left side. I require a KAFO to walk and use forearm crutches. My right leg has no feeling of pain or temperature. I can feel pressure though. I have a cav located in the left olfactory part of my brain as well. I pray everyday that it stays dormant and lets me continue my life as it is currently. As gloomy as this all sounds, I live a good life. I enrolled in school in 2017 to get a degree for the first time in my life. I have a great husband and 3 amazing kids. I will finish school in March of 2020 and look forward to starting a new career. I will never say I am grateful this happened to me because I miss my old body every second of every day. But I do have a better appreciation for life. I look forward to the future and try to be someone my family can be proud of.