My Story started in 1993 when an accident at work lifting a patient ruptured 3 Discs.
I was firstly given a Depo-Medrone Epidural and Manipulation under a General Anaesthetic by an Orthopaedic Surgeon at my local General Hospital. After no improvement and the offer of surgery, I went to see a Neurosurgeon who decided that a Myelogram was the next step.
My Mother asked about something she had seen on TV concerning the dangers of the Dye and was told that did not happen anymore and that was when old Oil Based Dyes were used. I was told that it was 'Safe' & that only 2% of people suffered a headache and 2% sickness.
I was given the Injection of Iopamidol and tipped around whilst having X-Rays, then laid down flat and taken to a CT Scanner. I soon became really ill after the CT and was left lying down flat. I tried to make it to the toilet at some point & passed out. After a few days of feeling like death, I decided that if I was going to die, I wanted to be at home.
My Mum came and picked me up on about the 5th day with a bucket to make the 30 mile journey home.
I eventually stopped vomiting but suffered with this headache for what I think was several weeks. I was told that Surgery was not advisable.
My medical records were changed & said that I had no problems and left soon after.
My Myelogram shows that the dye accidently leaked into my Sub-Dural space, as stated by the Radiographer.
So from here I plodded on with a "Bad Back."
In Dec 2000 I flew to Tobago to get married and suffered quite severe pain with the flight both ways.
On 01/01/01 I was overcome with severe pain and basically this was the beginning of all my present problems.
I returned to the Neuro who was livid to see me but he gave me an MRI and told me that he didnt know what was wrong and discharged me.
Next was a top London Orthopaedic Surgeon who also made me cry and discharged me.
This behaviour kept happening. Cutting the long story shorter, I eventually went to see a Uro-Neurologist who read out a letter from a Neurologist at the same hospital, the letter said "Please could you see this pleasant 38yr old lady with Post Myelography Arachnoiditis!"
After this the Neurologist vanished and all the DR's I saw after said that I didnt have Arachnoiditis, but I had a copy of the letter. In my last MRI I was told I had "Insignificant Nerve Clumping"
Once I knew what was wrong I could deal with it, the not knowing was a nightmare.
I was lucky to discover Mike and Arachnoiditis.co.uk and many people from the group, who with their support helped me understand the effects of Chronic Pain and how to cope and get back on with family life.
I have plodded on learning how to do the best I can, until October 2011 when my Shoulders and Arms became so painful. One arm I cannot lift, even to put deodrant on. Last week I had a Full Spinal MRI and I am now awaiting the Results.
Iopamidol has also now been proven to cause Mollarets Meningitis (Yet another form of Chemical Meningitis/Aseptic Meningitis, as well as Death, Coma and Arachnoiditis)so much for being 'Safe' which is why I have suffered with Shingles almost every 3 weeks since being injected.