- CASE FILE
Born with no tailbone causing severe constant pain. Need help to diminish pain. Almost impossible to walk. Continues to get worse with time.
ABOUT THIS CASE FILE
I am looking for pain relief of my excruciating buttocks pain which has been with me my entire life, increasing in intensity with time. I was born with Spina Bifida, No Tailbone, Horseshoe Kidney, unable to control my bladder, Situs In...
I am looking for pain relief of my excruciating buttocks pain which has been with me my entire life, increasing in intensity with time. I was born with Spina Bifida, No Tailbone, Horseshoe Kidney, unable to control my bladder, Situs Inversus (100%). Situs Inversus means that all my organs are on the opposite side of my body than yours, like looking in a mirror. Doctors did not expect me to live to see my teen years. When I turned 15 doctors told my parents I would probably out live all of them. I have been able to walk on my own until 5 years ago when I had to start using a walker for stability. Now that walker is my life and I can barely walk with it. Here I am, 68 years old, married for 46 years with 3 healthy adult children, 9 healthy grandchildren and a healthy great-grandchild. My wife calls me a "Medical Miracle". We were told we would never have children. When I was 22 years old I trained my bladder so it would hold the urine instead of constantly empty on its own. I am a fighter and have never given into the negative. I have had multiple lumbar and cervical surgeries. I have a SCS (implant for pain) which has only helped 1 to 5%, when the trial helped 75%. That 75% was an amazing feeling but after the implant surgery I waited for that amazing feeling to return only to have more than 1 year of no real relief. I have gone to all of my doctors: pain management specialist, orthopedic spine surgeon, neurologist, etc. Plus I have even been to a plastic surgeon. All of them tell me there is nothing more they can do for me. I have tried stretching exercises, stationary bike trying to build strength in my legs, only to spend many days recuperating from overdoing it (that was less than 3 minutes). So physical therapy is not an option. I am dying from the excruciating pain and do not believe in giving up on hope. There has to be something that can be done for me with the technology we have today. I survived back in the 1950's when I was expected to die, I am not ready to give up yet. I believe. I want to have a better quality of life to spend the golden years with my wife who deserves to have a companion instead of being a constant caretaker. She has stood by me through this life and watched me deteriorate over the years. Please, if there is anything out there that may help, share with us so my wife and I can hear some good news instead of the negative 'nothing more we can do for you" statement. We thank you for