My journey

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When I was 21 I was in an extremely abusive relationship. In that time I remember several times in my pregnancies having extremely bad back pain. I would be told my hips were separating too fast or other things. I have 5 beautiful daughters. 11 days before giving birth to my 4 th daughter, I fell down a flight of stairs and fractured my tailbone. That was 23 years ago. I went to numerous doctors because I would get to the point where I could not walk. I had an MRI in 2004, the said was normal. I then lived in Michigan. We moved to TN in 2008, I saw a Dr there because I was getting worse. In August that year I had lumbar fusion L4-L5 S1 and was told I had tethered cord syndrome. We moved back to MI and saw a Neurosurgeon and I was not getting better. I had several spinal injections, 2 blood patches due to spinal leaks. In 2010 I had a stimulator implanted. This did help with the pain to the point I was only taking Tylenol for pain, my life seemed back to normal, I went back to work. Fast forward to 2018, started getting a little more discomfort, by 2019 I told m PCP something was not right. I wasn’t even using my stimulator, battery died. So she sent me to a new pain management Dr. She ordered new images. As soon as he heard I had a stimulator he had a rep come in and scheduled me to have a new one placed and injections to get me to that appointment. Every time I would go to the office I kept telling them it was not helping and they would just adjust it. My symptoms were getting worse, body twitching almost like seizures, I was falling due to losing my balance. The pain was so intense up my whole back, I was having trouble lifting my left leg. I asked my PCP for a referral to a neurosurgeon so she ordered a CT myelogram 2/21. I took this to the specialist and I was told there was nothing they could do go back for injections. Frustrated I waited until 8/23/21 to go to pain management and it was then I was told I had arachnoiditis. They set me up for injections. So my husband and I left and I immediately started researching and found a support group that led me to Dr Tennant and I sent him my MRI from 2004 and 2/21 it was noted in 2004.
I am so devastated that I have went for years untreated and now have adhesive arachnoiditis. I am not getting proper treatment. My health is deteriorating quickly.