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JuvaPJJuvaP Posts: 52
Hi Everybody,
I've been researching this condition & unfortunately, I have most of the symptoms.
I've never had bck surgery, but I've had several epidurals.
From my research I've learned that regular MRI's are not a reliable diagnostic tool.
Can antbody tell me what other tests are used either to diagnose it, or rule it out?
I've found websites dedicated to this, but their message boards are inactive.
I have an appointment with my PCP tomorrow afternoon & would like to go in armed with as much information as I can.
Does anybody here suffer from this? Can anybody help?
Thanks bunches, Juva


  • I have this problem. An MRI or CT Scan may be able to demonstrate Adhesive Arachnoiditis (AA), although in the early stages it might not be picked up. You need to be aware that the MRI results may fail to correspond accurately to your symptoms. I don't recommend getting hung up on getting a diagnosis as management of the symptoms is the only option with AA being incurable.

    An EMG (electromyogram) or NCV (nerve conduction velocity) tests may be performed to assess nerve damage.

    The risk of contracting arachnoiditis from an epidural is controversial and highly unlikely. Your PCP is probably not the best doctor to diagnose this problem. You may be better off with either a Neurologist, Neurosurgeon, or a Pain management Doctor who is part of a Spine Center.

  • it was suspected by my spinal specialist/surgeon that i may have this condition based on symptoms and history. yes its very unlikely to get from a standard epidural, however mine was for a caesarean, the anaethitist admissed to piercing my back 7 times including hitting nerves giving that horrible electric shock feeling down my leg.

    we did a ct scan, then an mri with gallolidium which didnot confirm this diagnosis. tomorrow in fact i am having nerve conduction studies as i have continued (2yrs on) nerve pain down my leg, burning in my foot, numbness in areas, reduced sensation in others, weakness and also pins and needlees at times. this is all in my right leg. in my back i have intense stabbing pain, like a knife in my back and spasms :(

    I wish you all the best on your path to a diagnisis, its not an easy one
  • I am NOT a Dr. and this is my first day here at SH. I have different issues BUT..... I am sorry for your pain and suffering. My Loving mother has suffered with arachnoiditis for 30 years. It was caused by a myelogram at a VERY prominent hospital in Houston. Yes, they admitted it was from the myelogram that was NOT ordered by her Neurosurgeon. Her neurosurgeon was the HEAD of that dept and he also agreed that there are equal and better tests than the myelogram. So......A couple of things:

    1. If you do extensive research, you will find ANY, I repeat, ANY type of spinal procedure, that invades the spinal canal, can inflict the arachnoiditis malady.

    2. There is NO known cure and do enough research you will see almost no $ for research. Arachnoiditis is usually from a medical mistake, therefore, research could admit guilt.

    3. There is higher rates of contracting it in places like England, Australia etc.... They have some facilities working on treatment but as someone stated earlier, pain management is the best approach for now.

    My parents did not pursue legal options as they were begged to do, 'cause it was not in their Christion way of being. I did not understand at that time but now I agree.
    I pray for you and if I find anything to help, I will contact. Mayo Clinic???
  • hi,have a question.is retrolisthesis a form a arachnoiditis.
  • sorry bad spelling.is retrolistesis a form of arachnoiditis.
  • Not even close. Retrolisthesis is a posterior displacement, slippage, of one vertebral body with respect to the adjacent vertebrae. Arachnoiditis is a neuropathic disease caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the central nervous system, including the brain and spinal cord.

  • Juva, when I saw the symptoms I thought the same thing- hey, those are my symptoms! I suppose it is not out of the question, as I've had quite a bit of internal rearrangement, but I kind of think that the symptoms as listed are rather generic neurological symptoms, rather than something that would be specific to arachnoiditis vs. other spinal disorders- especially those, like mine, that come from multiple sources.

    I would hazard a guess, and others who are more experienced with this disorder can correct me if I'm wrong, that arachnoiditis is not something that lends itself to self-diagnosis.

    Or maybe I'm wrong, the symptoms are specific, and I should bring up the possibility to my neuro. So, seriously, if I'm wrong let me know!

  • Arachnoiditis can be confirmed through imaging. Unfortunately, for some who may have milder cases, imaging won't show anything. The arachnoid layer could be just inflamed without the development of any scar tissue. The inflammation stage is the beginning of the disease and some folks can live like that for years with minimal ill effects.

  • http://www.ssa.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_04
    Section 1.04 gives the criteria from Social Security as how arachnoiditis can be proven to their satisfaction. I'm sure there are lots of tests, but this is the government's critera.

    I had all the symptoms of arachnoiditis but was not officially diagnosed until an injection. My dr. was doing a selective nerve root injection to see if that was the nerve causing so much trouble. This is like an epidural only the needle goes in a little to the side.

    He kept having to use larger bore needles to bore through bone caused by BMP during fusion surgery. When he finally broke through and could access the nerve, he accidentally nicked a vein. The scar tissue, nerve, and blood vessels were twisted and clumped together. He indicated that on a procedure note.
  • pkvinslandppkvinsland Port Townsend, WaPosts: 4
    I had 5 back surgeries, the last 3 being fusions. The pain progressed so the Dr recommended more steroid injections. He was not able to get into my lower back because of bone and scar tissue. This was noted. A couple of years went by and a myleogram was ordered. Only after I asked for the report did I find out I had adhesive arachnoiditis. My Dr refused to mention this not wanting to give up the surgeon that did the fusions and who had used Bmp without my knowledge. I now live on opioids and live in constant pain.
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