I was diagnosed with Arachnoiditis over a month ago, after a neurosurgeon read my MRI films. Here is my story......
In 1985, before giving birth to my youngest son, I was given an epidural which was a botched one. This anesthesiologist stuck me repeatedly and I felt shocks go through my body. After screaming for him to get away from me, they sent in another doctor to do the epidural. I had to have C-sections with my children, so I had to have the epidural.
About three months later a head ache like I've never experienced (incapacitating) hit me and I wound up in a hospital for three weeks. They did a spinal tap on me and many tests, but this was in 1985, so the technology was limited. That headache finally subsided and I was able to return home.
I had many problems which I had never had before. I had severe Tinnitus - ringing of the ears, although it was more of a "swooshing" sound. I had constant headaches which were diagnosed as migraines. I had night terrors.....waking up feeling like I was dying. I had numbness in my hands and my feet. I had low back pain. All of these symptoms were blown off by my doctor as "probably in your head". It was more a little frustrating, knowing that something was wrong with me.
I was put on Imitrex for the migraines which did help me. My low back pain was getting worse, but I am older, so I thought that was probably just from my degenerative disc problems. But for the last couple of years a new symptom came. I had HORRIBLY PAINFUL cramps in my legs and feet. They would come in the night and really anytime. I told my doctor and again he had not explanation and didn't even offer any kind of help for that. I knew it was not normal, but what could I do? I even wondered if I had MS – many of my symptoms seemed to point to that. Also, my vision was getting blurry on and off.
This past Christmas I was coming up the stairs and banged my shoulder into the handle of the banister. It jolted my whole body, and send shock waves through me. Then I almost fell down from the excruciating pain in my lumbar area. I literally could not walk. The only way to alleviate the pain somewhat was to lay flat.
I changed primary care doctors – finally! He sent me for an MRI. When he got the results back, he told me that he wanted me to see a neurosurgeon, which I did. That doctor told me that I had a few problems because of my osteoarthritis, like facet disease and a minor slipped disk and degenerative disc, but he said that he saw nothing that would explain the kind of pain I was in. He wanted me to go to a pain management clinic and have shots. I am SO glad that I did not do that now!!
My primary doctor gave me a full exam on my back, and he was very concerned about "instability" that he said he could feel. He sent me for a "flexion/extension" X-ray of my lumbar spine. The radiology place did the X-ray wrong. They were supposed to have me standing and I was laying down. So they offered to have me come back and repeat it at no charge. I told my doctor no way, because that is radiation.
I was curious to see if any place offered flexion/extension MRIs. I began to research this online. I was reading that for lumbar problems, this type of MRI was much better because they have you sitting or standing in the painful position, and then take the pictures. I asked my doctor if he would write a script for this kind of MRI. He argued with me that it wasn't necessary since I had the other MRI, but he finally gave in and wrote it. There were six facilities in my area that did this MRI. I made the appointment and had it done.
By this time, the pain in my spine had traveled down my right leg. I contacted the neurosurgeon and told him about the new symptom and that I had the flexion/ext MRI done. He told me to come back to him. He read my new MRI and then came in the room. He asked me two times if I had prior back surgeries done – I didn't understand why he was asking that. Then he brought my husband and myself over to his computer to see something on the MRI. First he showed a film with my nerves – they were separated and normal. Then he advanced to another film and he said to look at how the nerves were "clumped" together. He told me that I had Arachnoiditis.
I laughed at the name but he didn't smile. I said to him "Can't you just fix me with an operation?" He said no, he couldn't. He told me to go home and gather all the information I could get from reputable websites on my condition. Then he said for me to also find support groups. I was really getting scared. He told me that he wanted me to have a spinal cord stimulator implant put in me and wrote a referral for that. I have decided not to do that, because it only helps pain in the legs – not pain in my lower spine.
So that is my story. I hope and pray that our collective stories will be heard, and that a STORY about the dangers of epidurals will finally come out in the news. People need to know!!!!