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One Response to “Arachnoiditis discussion group”

  1. Jackie Del December 1, 2013 at 12:59 pm #

    Hi Dr Kent,
    If you have another Arachnoiditis seminar, I have a few questions that I would like to submit.

    1) How does exercise exacerbate the condition? As a fitness professional with more than two decades of experience, I have always believed in the healing power of movement. It is inconceivable to me that movement worsens the condition.

    2) I realize thar arachnoiditis is chronic inflammatory disease, but I was led to believe by my NS that it is not progressive. I am wondering if there is a connection between the disease and other conditions that have manifested since (rosecea, massive sinus infections on right side that are not responding to antibiotics, tendinitis in both elbows that I can’t seem to get rid of). If so, what is the mechanism for the spread of inflammation?

    3) Is there an anti-inflammatory diet that you would recommend?

    4) I have very localized vice like pain in the perineum and right Achilles. It feels as if someone is tightening a cord through my right groin/buttock to the extent that I feel like I am being squeezed in half. I have read of other Arachnoiditis patients having the same feeling around there midsection (like a belt was being tightened) and at the knee caps (like someone was ripping their knee caps off). My achilles alwayscfeels as if it is about to snap. On no level can I understand this sensation. It makes no sense to me. I woke up in the recovery room after a triple lumbar laminectomy with the vice like feelings and deep numbness in my groin, buttock, leg, heel (r side only).

    5) What other neurological issues are associated with this disease?

    6) I was diagnosed early on with arachnoiditis (8 months after my surgery) and have been positively tested for bladder and bowel dysfunction as well. But no doctor seems to know what to do. I feel as if I have hit a brick wall in regards to treatment. The medical community here in the Midwest is either unfamiliar with the condition or unwilling to work with a patient who has it. It is a hopeless feeling. Is there some direction you could offer?

    I would welcome any help that you can offer. I know you are also in the loop on research efforts and I am very interested in what is happening on that front as well as willing to participate in studies to better understand this disease and develop treatments.

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