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Seeking experience with spinal cysts and IC

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  • Seeking experience with spinal cysts and IC

    Hello Everyone,
    Well, I've known about this forum for 10 years now but never posted. I was diagnosed with IC at the age of 17 but for years avoided support groups such as these, trying my best to instead push this disease out of my life and avoid making my suffering a major part of my identity. I have tried a slew of medications (and suffered more severe side effects than I can count), physical therapy, and interstim. Heck, I even tried treatment for chronic Lyme. With the exception of Myrebetriq, which I am currently taking, everything served only to worsen my symptoms, produced intolerable side effects, or failed to improve my symptoms. I eat an extremely restricted diet (even by IC standards) in an effort to avoid any aggravation of my symptoms, and my every action is influenced by this disease. For years, I have been expressing to physicians that my symptoms don't seem to fit well into any category (IC, OAB, etc.) and that I suspect a neurological etiology based on my symptoms, response to medications and therapies, and the lack of any discernible pathology in my bladder itself. For years I've been dismissed, despite having a veterinary education and being versed in the field. I finally hit the end of my rope and ordered my own MRI, paying for the exam out-of-pocket because no doctor would refer me, even after 10 years of failed therapies and few options left for treatment. The MRI revealed a 3 cm spinal cyst extending from my S4 spinal foramen. Based on the MRI images and further research, I suspect this may be a Tarlov cyst. I am writing to ask if anyone here has experience with these cysts they would be willing to share. I know the following:

    1) I'm an unlikely candidate for a spinal cyst, being only 27 years old. But yet, I have one.
    2) They are often dismissed as benign, but there is documented evidence that large enough cysts can compress nerve roots and the spinal cord itself, leading to symptoms such as mine (extreme urinary urgency/frequency that remains constant and unrelenting despite all interventions); I have already read the IC network page on this subject in addition to a good handful of scientific papers and case studies
    3) Mine is located at the sacral micturition center, meaning that ganglia responsible for bladder contraction and sensation are present in the region and could be compressed by the cyst.

    To be honest, I'm having trouble fathoming that I could have discovered the root of my problems after all these years of being told I'll never know what is wrong with me and my life is destined to be nothing more than unrelenting torment until death. I also know that treating such a cyst would be risky, and having already significantly and permanently worsened my symptoms by undergoing an interstim surgery out of desperation, I know that things can always get worse. However, I also know that my bladder itself is fine (I have no ulcers, scarring, or functional difficulties), I have no other pelvic abnormalities, I have other signs of neurological impairment (semi-regular shooting nerve pain in my legs and leg weakness, improvement of symptoms with sedative and analgesic-type medications, and worsening of symptoms following surgical injury to the sacral nerve roots), and I respond to physical therapy in a manner entirely inconsistent with pelvic floor dysfunction. I also have a history of horseback riding and one major traumatic fall/injury several years prior to the sudden and unexplained onset of my symptoms. Does anyone here have experience with spinal cysts that might help me determine if I'm truly onto something after all these years or if my judgement is being clouded by the allure of closure and a possible end to the suffering?

    Thank you very much in advance for any information you may be willing/able to provide.

  • #2
    I'd like to say to the IC Network.

    I'm sorry I can't answer your question, but hope there may be someone who can. You might want to call Jill at the IC Network office --- she's knowledgeable in many areas.

    Warm hugs,
    Donna
    Stay safe

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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