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!!!! If you have had back surgery or epidural steroid injections or an epidural for childbirth, and have similar symptoms as mine, and if they are telling you it's Fibromyalgia or Failed back syndrome.........GET AN MRI and go to a NEUROSURGEON to see if you have Arachnoiditis!!
Here is a video that a friend in my support group made: