At the end of November, my family went on a wonderful vacation to Destin, Florida. We had done the same thing the year before and enjoyed it so much, we went again. We did a lot of walking on the beach, the pier etc. By the end of the week, my back was killing me and I had such an extraordinarily hellacious headache, I was nauseous and spent our last evening bedridden. I felt slightly better the next day, but it was not a fun 2 days for me riding in a very uncomfortable rented mini van. It took me 2-3 weeks of rest and surviving a few more of those headaches to “mostly recover!
I was supposed to have had a myelogram the week prior to going on vacation because my back & leg pain from a 2015 incident continued to get worse. This was put off until the day after I returned home due to a machine breakdown. I am glad for that now because it let me enjoy that time with my family.
About a week later, I went to see my Dr.’s PA (physician assistant) for the results. I was told I have arachnoiditis! It was all said very matter of factly! I was told there was no treatment for this disease and it was explained that I could be put on pain meds that would have to be steadily increased in dosage over the years or they offered me a spinal cord stimulator. I said there was no choice for me, I don’t want to be in drugs. I was shown my images where the nerves were clumped together sent on my way with a booklet. I just thought I had some scar tissue pressing on nerves that would need to be removed. Little did I know, I was about to start getting the education of my life.
Well, my insurance specifically excludes spinal cord stimulators, so I set off to find out the cost and friends suggested a GoFundMe account. I have yet to get any final numbers, but it would be around 70-80k is what I’ve heard. Waaaaaaayyyyy beyond our means to say the least.
So, my research on this disease began…. and as it turns out, I think it was probably a good thing my insurance company will not pay for it, because it prompted me to do a lot more research.
Now, I’m searching, hoping & praying every day to find the answers for myself & so many others in pain. At this point, I am not finding anything that is going to make a significant difference in the affect this disease has on my life. The only things I know to do at this point is do as little as possible to keep from aggravating the membrane and find a decent balance in what I can do.