Here is a pretty good site with the definition and some of the key terms concerning arachnoiditis.
It is part of the Circle of Friends With Arachnoidtis.
The biggest thing I think most people do not understand when you tell them about the arachnoiditis is that there is no cure for it and it is usually induced by a treatment such as ESI's, Myleograms or surgery but there are cases brought on by meningitis as well.
Like the Spondylolisthesis exhibition of symptoms is not the same as say a person who has MS or CP. I look and almost walk like anyone else except for a slight gait or "waddle" every know and then. The biggest problem I face from the day to day symptoms is the inability to sit or stand for long periods of time without having to re-adjust myself or change positions entirely. Sleeping can be difficult as I need to change from side to side through the night other wise I wake in a fair amount of pain.
Other then that I am good to go. Some days are good and some are bad as evidenced by some of my entries. I am optimistic that the good days outweigh the bad and even when I have a bad day there are some that are tolerable more often then there are days that I just cannot do much at all.
1 comment:
I am writing you about my daughter.
She will turn 29 today and had her second spinal fusion one year ago today. Two of her original pins had broken from the first spinal fusion of L-4 through S-1. She developed a spinal fluid leak after that surgery, and had to be re-incised to repair that.
Her pain started in January of last year and has never subsided. She has been to pain management, physical therapy, a neurosurgeon at Cleveland Clinic and various other doctors, before she was finally diagnosed with arachnoiditis. She underwent another surgery in December of last year to shorten (replace) the pins, as one of them appeared to be in contact with a nerve. This only slightly helped with the pain in one leg, but didn't touch the other one or the "fireball" in her low back. She currently takes Percocet and Soma for pain, but has chronic uncontrolled pain.
I am a nurse and realize that pain management is different for each patient. I am however, in hopes of hearing how people with no end to their pain in sight, are keeping it at an acceptable level. I also am curious about how depression is managed.
We live in Ohio, if anyone knows the name of a good doctor please pass it on. I'm in hopes of at least finding a good support group for my daughter and will pass on any return comments.
Thank You,
Cindy
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