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Arachnoiditis, maybe?

--I am not really sure where to begin with this message, but here goes. I have a history of spina bifida/tethered spinal cord and had my cord de-tethered when I was 23 due to deteriorating bladder and bowels--otherwise I was symptom free. Everything went well, except for a spinal fluid leak which I had to have another surgery to patch up a month later. All went fine with this until..........

Ten years later (last November), I started having severe back pain when sitting mainly in my buttock region and noticed leg tingling and pain throughout the day as well. I went through all kinds of possibilities with my doctors including piriformis syndrome and SI joint pain. I then had several opinions from neurosurgeons in which they told me my cord was tethered again, which was revealed on an MRI. I had surgery April 2nd of this year and I am not better, in fact I feel worse: back/leg pain, and leg stinging/burning on the left side--incredibly painful. I really have a hard time sitting for long periods of time and often wear an ice pack in order help with the pain. I am also taking Lyrica, Tramodol, Valium (for some of the twitching and to help me sleep at night) and even morphine at times to help with severe break-through pain. My neurosurgeon is baffled that I am not better, and so am I given he told me I'd be fine after the surgery. He said it went well. He did mention arachnoid adhesions that he had to operate on. I have a follow-up appointment with him in a month and I'm afraid there's not a lot he can do at this point.

I saw a neurologist this morning who is also baffled by my symptoms and referred me to a pain management clinic and also sent me to have an MRI with and w/o contrast for my lumbar spine post surgery. He said something about getting a spinal tap to see what my white blood cell count would be and that would reveal whether or not I had arachnoiditis. My question: has anyone had this done? can you tell if you have this based just on an MRI or do I need the spinal tap? I live in Atlanta, where we have some of the best medical care, but I am at a loss here for help and who might best be able to understand what's going on. According to my neurologist, he is not aware of anyone who specializes in arachnoiditis and how best to treat it/look for it. Has anyone had this issue? It's been a long journey and I am frustrated in not knowing what exactly is going on. I am 33-years-old and have a 5 and a 2 year old. I am a full-time high school teacher just trying to survive right now and I am borderline depressed about all of this. If any of you have advice/knowledge on this rare spinal disorder, please share--who to see, where to go, and how best to "manage" it as I believe there is no cure for this. I have read the plethora of websites out there, but looking for advice elsewhere.

Thanks for anything you can offer.
Jennifer Kunz


  • LizLiz Posts: 9,647

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • sandisandi Posts: 6,269
    edited 06/16/2014 - 6:14 PM
    Adhesive arachnoiditis is a inflammation of the spinal nerves in the spinal cord covering. It is usually caused by damage to the spinal nerves encased in the dura, causing the nerves to adhere to the inner walls of the spinal cord covering.
    Myelograms, or rather the dyes used have been said to cause the adhesion, or punctures into the spinal cord and the medications, such as steroids being injected into the dura.
    It is seen on MRI and if you have it, you can see the nerves are clinging to the side walls of the dura......at least that's how mine was found. The spinal nerves resemble overcooked spaghetti strands in the covering.
    There is no cure for it, but there are treatments, especially the use of neuropathic pain medications, can ease some of the pain related to it, and recently they have found that using/implanting of a spinal cord stimulator helps to mask the pain for those who are effected .
    Arachnoiditis is rare, and it's progression is very, very slow in some and in others it is faster, so little concrete when it comes to prognosis.
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