What do I do now?

Question

Well my question is pretty simple. In dec '09 I had my L4/L5/S1 fused, since then I have went through several tests, exams and pt. Now my current MRI shows that the L5/S1 disc is bulging and I have Arachnoiditis disease. According to my doc, he says this is all normal. That is my question. Is this all normal and am I going to spend the rest of my life in this type of pain? The pain feels like I never even had surgery. I hope this will all go away, so I can get on with my life with my family. 
Help please

mummy3too · Answer

I have also been diagnosed with arachnoiditis (adhesive arachnoiditis). My MRI shows the nerves clumping within the thecal sac. I have had 2 previous srgeries on the L5/S1 and it is currently herniated for a third time. I have excessive scarring all over that area (looks like discitis - but doc say's it's not) Epidural Fibrosis (S1 nerve encased in scar tissue), other problems seen on the MRI, too. 

I have to agree with watsnext, doctors are very shy to talk about arachnoiditis. I understand it's rare but why would they all skirt the issue? Is it because there is no cure, so why spend anytime speaking with a patient regarding a condition they cannot help or cure?

thanks for you insight!

Mum

watsnext · Answer

Thank you for the reply. Yeah, I am looking into getting another opinion on the situation, but the problem that I am running into, is that the doctors that I have spoken seem to shrug their shoulders at the word Arachnoiditis, like they have never heard of the word before (like I'm making it up). So it's kindda like running into a brick wall at a dead end road. So I will just looking and maybe-just maybe I can find a doctor who understands this Rare disease and can help me with it.
Thanks again for all your help

anuragsrivastava · Answer

Hi, Thank you for your question. Your symptoms could be suggestive of either some nerve injury or a pressure on the nerve after the fusion surgery and due to arachnoiditis. Another possibility in your case could be damaged the soft-tissues such as muscles or underlying skin. However, it is essential to clarify that nerve injury does not necessarily mean complete injury to the nerve and it may be either edema or some type of compression of nerve by a blood clot or scar formation. I would recommend you to see a neurologist who can evaluate the details of your case and could better determine the insight of your situation. Hope this helps.