I have spoken with 6 different people about this and not one person has ever heard of it. My Neurologist, my PT, my family doc, and an R.N. everyone keeps telling me that scar tissue after a spinal fusion is normal. However, they don't realize how bad the scar tissue really is cause they have never heard of this Rare Disease. So for many people who have had spinal fusions, shots, or anything seriously done to their back want to look into it. How it is done is simple, you have an MRI with a dye injected to find scar tissue. However, if it wasn't for radiologist finding this, I don't know what I do, cause I wouldn't know what would causing the pain. I'm happy that he did find it, said cause there's nothing anyone can do about it. Scar tissue (in my case) will always grow back no matter what.
I also want to clear something up - I have adhesive arachnoiditis - It is when the nerves within the thecal sac begin to clump together like spaghetti. It's not just scar tissue... Although it does begin with the scarring of the arachnoid lining. Do you have the same thing?
I also had a radiologist confirm Arachnoiditis. What did your report say? My MRI shows the nerve clumping and it's seen clearly on the MRI.
What have your doctors told you?
I have had multiple opionions and they agree I need fusion in the lumbar and cervical area - but I have chosen to live with the pain since they also agree it will do very little for my pain where the arachnoiditis is... AND could make it worse. I have decided to hold off on the cervical fusion since I developed arachnoiditis after the last lumba surgery.. I do not want to take the chance of it developing anywhere else.
I have a tremendous amount of scar tissue from the surgical area - more than the average person. Do you as well?
Please share your story - this condition is so rare, most people and doctors do not even know it exists.
Thank you so much for posting!
Mum
I apologize...This can happen to anyone, but not everyone I apologize for the mistype