... in response to Tarlov Cyst / Perineural Cysts
  1. Linda Ellis Linda Ellis United States says:

    Thank you for sharing.  This still is a good overview of Tarlov Cysts that every doctor should read and fully comprehend.  Most doctors tell those of us with this disease that the cysts are incidental findings and "Rarely cause pain" -- which translates into "it must be something else causing the pain" and there they let it stand literally closing the books on us.  

    Only a handful of doctors indeed in the whole world, not just the United States, have the needed knowledge, experience, and full grasp of these cysts to operate on them properly that gives the patient the best hope for recovery; which we are often told can take up to 2 years.  

    What is also desperately needed is more research, clinical trials to look for drugs that can also help reduce the pain without significant side effects until at least more surgeons learn how to properly handle these cysts and not make the patient much worse.  All surgeries have risks as we know, but with Tarlov Cysts involved the risks are much higher due to their nature.

    I belong to several Tarlov Cyst Facebook Groups and the number of members are growing and people of all ages; yes men as well as women, are learning that they have symptomatic Tarlov Cyst Disease.  It is listed as a "rare disease" when in reality it isn't as rare as some may think.  

    And, anyone who has asymptomatic Tarlov Cysts is at risk with them to one day become painful and once that happens the disease is on the march as it is a progressive disease.  

    Aspirating Tarlov Cysts offers only temporary relief at best; and it is my opinion that more needles jabbed into the spine is not good and can create more issues.  We're talking serious chronic pain with this disease and it affects bowel and bladder functions as well.  

    I pray every day that the medical profession takes this disease more seriously as a serious disease than it apparently does.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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