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  • Possible Arachnoiditis - HELP ME!!

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    Old 12-05-2016, 08:23 AM   #1
    njb3636
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    Possible Arachnoiditis - HELP ME!!

    I am in desperate need of help and advice. I am having continued and worsening bilateral buttock pain and burning pain in both thighs (front and back). This began about a week following a CT Cisternogram where dye was injected through a lumbar puncture. The Cisternogram was performed almost 8 months ago. I am currently unable to sit for longer than 15 minutes without increased buttock pain on both sides. I have had 4 MRI's (3 lumbar and 1 thoracic), an EMG (normal), and tried many medications with no relief. I have been on 2 rounds of steroids (last time was 40mg taper), gabapentin (up to 2800/day), lyrica, flexeril, diclofenac, duexis, advil. My lumbar MRI shows a mild to moderate herniated disc at L4-5 and arachnoiditis has not been seen by anyone who's viewed the MRI. I have been told however that it "may be arachnoiditis" even though it doesn't show on MRI. I also sent my MRI's to a dr who specializes in arachnoiditis, and he stated that they show early signs of inflammation/arachnoiditis. I have been to 7 different doctors and not one has seen anything on these tests. I don't know what to do from here or who to see. I am only taking advil right now because nothing else has worked so I've stopped everything else. I am stuck. My last visit to an orthopedic doctor resulted in him recommending epidurals for my herniated disc, which is what everyone is blaming my pain from. Any advice would be appreciated. Thanks.

    Last edited by Administrator; 07-09-2017 at 06:50 AM.

     
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    Old 12-13-2016, 04:01 PM   #2
    teteri66
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    Re: Possible Arachnoiditis - HELP ME!!

    Welcome to the board. I learn something new most times I come on the board. I used to be current on recent research, but since I recovered from my last spine surgery about five years ago, I haven't paid too much attention. I saw many spine surgeons and other specialists back in 2010 when no one could figure out why I still had the same symptoms despite two surgeries. Arachnoiditis was suggested by at least one surgeon, but the surgeon I ended up going with told me that was ridiculous. I chose to believe him, and had further surgery which resolved my issues.

    Unfortunately many spine doctors know little about arachnoiditis, and fall back on the old " it is extremely rare" comment to change the subject.

    I wonder if you could find a local doctor who could use it to direct your care? There is a need for early care, which can be difficult when many doctors refuse to believe arachnoiditis isn't all that rare!

    Last edited by Administrator; 07-09-2017 at 06:51 AM.

     
    Old 12-15-2016, 05:56 PM   #3
    njb3636
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    Re: Possible Arachnoiditis - HELP ME!!

    I have had my mri's reviewed and the doctor said that I show early signs of Neuro-inflammation which could turn into arachnoiditis. In total I have probably seen 7-8 other doctors and none have mentioned this. Each doctor seems to feel my symptoms are from a herniated disc. So who do I believe? I have no idea what to do.

    Last edited by Administrator; 07-09-2017 at 06:51 AM.

     
    Old 12-17-2016, 09:28 PM   #4
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    Re: Possible Arachnoiditis - HELP ME!!

    Hi njb, I have adhesive Arachnoiditis for decades and it's extensive and has been there progressing for decades. I have had a pantopaque myelogram, 4 lumbar surgeries, epidural anesthesia during labor twice, 50 plus epidural steroid injections and many csf leaks with dural grafts so the cause for me having it could be one or multiple procedures and really can't be determined. I know 8-10 people personally that see my doctor currently and he has reviewed my mri's and he is working to help adhesive Arachnoiditis patients with treatment protocols and has been treating many of us for years. My neurosurgeons and orthopedic surgeon, physiatrist have always insisted on and used my MRI's with contrast and did a complete neurological exam to diagnose AA and said the clumping of spinal nerves or nerve roots inside the thecal sac is a hallmark sign.

    Herniated discs that are impinging on a nerve root usually cause a radiculopathy type pain like a shooting radiating pain down buttocks or legs. Arachnoiditis symptoms can be very many like severe pain and neuropathy symptoms such as tingling,vibrating, numbness, feeling of water trickling down legs, feet feel like standing on broken glass or stones, and fiery burning on back or legs. There are many other symptoms and the article I found most useful at first was The Adhesive Arachnoiditis Syndrome. I have been told by my drs there is no treatment for me for AA however in early onset cases less than 12 months along I have read that some Drs recommend early treatment with IV corticosteroids to hopefully stop the neuroinflammation or to hopefully slow the progression or lessen the severity of Arachnoiditis. I have found that Spine NS's or spine only fellowship trained in neurosurgery orthopedics in major teaching medical centers have known at least enough about AA to diagnose me and all told me that avoiding all invasive spine procedures of any kind was the best for me.

    A neurosurgeon evaluation with a complete neurological exam and an lumbar MRI with contrast and radiologist report with a complete history and physical will hopefully be able to differentiate and assist in diagnosing and I hope that there is a treatment window available for you to slow or stop progression. I hope that you do not have it!

    Last edited by Administrator; 04-12-2018 at 07:35 AM.

     
    Old 12-19-2016, 05:37 AM   #5
    njb3636
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    Re: Possible Arachnoiditis - HELP ME!!

    Thanks for the reply. I'm so confused on what to do still. I was just started on Cymbalta for the nerve pain in both legs. I have tried Gabapentin and Lyrica with no success. I have 2 more doctors lined up over the next few weeks so hopefully I can get some answers. I have seen my MRI and I cannot see signs of clumping, but the fact that a doctor has mentioned early signs of neuro-inflammation worries me. As of now, there hasn't been a doctor who has agreed. Any other suggestions? Thanks.

    Last edited by Administrator; 07-09-2017 at 06:54 AM.

     
    Old 12-20-2016, 04:13 PM   #6
    teteri66
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    Re: Possible Arachnoiditis - HELP ME!!

    Could you go into the Hospital for Special Surgery? I would think someone there could help you.

     
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