The story of Jeannie
In June 2018 I was on my way home from church with my 4 kids to celebrate father’s day. We were right around the corner from our house when we were rear ended by a lifted truck. Initially I thought the neck and back pain was from the impact of the accident. The next day I ended up in urgent care because the pain all over was unbearable. After getting an X Ray and MRI my doctor told me that I had multiple Tarlov Cysts but that he was not familiar with them and had never seen them before. I was then referred to several neurosurgeons who said the same. Either they had never seen them before, didn’t think they were the cause of the problems or that they would not touch me with a 10 ft pole. There wasn’t a lot of information I could find, and each new doctor, neurosurgeon and specialist sent me home with the same answer. They didn’t know what they were or how to treat me. Within 6 months I lost feeling in my legs and the pain in my lower back, pelvis and legs was unbearable. I finally got to one of the 2 TC specialists and elected to get surgery to slow down progression of this disease and try to help with some of the symptoms. Within 9 months of the accident I not only lost control of my body but the overall sick feeling made me unable to do even the most simple tasks.
I had surgery in April of 2019 and was told I had one of, if not the most complicated and extensive surgeries my surgeon had performed. Over 7 hours in surgery and had 7 TC’s treated including 2 in the pelvic area. Some patients find immediate relief after surgery, even with the 2-3 recovery time we are given with this surgery. I am currently a little over 10 months post op and unfortunately have not seen any improvement yet. My TC’s have effected every nerve root and I have many more bilaterally up my spine and in my pelvic area. I was also recently diagnosed with Adhesive Aracnnoiditis, Ehlers Danlos Syndrome and a long list of other diagnoses to accompany them. These 3 diagnoses of incurable progressive diseases that few are familiar with seem to be “helping each other” get worse and have put me in a perfect trifecta of pain. I am still coming to grips with the fact that my entire life has been flipped upside down. 2 years ago I was seemingly healthy and strong, running around with my 4 kids and husband and serving our community.
I have been been bed ridden for over a year, unable to walk unassisted, sit at the dinner table or do the most simple of things. It has been a hard and sometimes hopeless road, but I am choosing to find joy in the midst of constant intractable pain and believing that God is going to use this for good and that miracles do happen. I am trying to use the small platform I have to spread knowledge and awareness and also encourage others to not give up. There is still good in every day, we just have to choose to find it. To follow my journey I have a Tarlov Cyst Disease playlist on YouTube you can find under “alittleaboutalot” and I am on all social media under the same name. We can get through this, just do your best, just for today. xoxo Jeannie