Tarlov Cyst Disease – Not so Rare After All

Untold numbers of people take opioid medications to control pain, real chronic pain. Yes, it does exist in so many forms. Why else would we call these drugs “Painkillers”?

Chronic physical pain can come from many sources and last a lifetime.

Citing one disease that can cause chronic pain for those who live in the shadows with it — Tarlov Cyst Disease that is symptomatic with pain.  It is a largely misunderstood disease, but one that is progressive and affects in a symptomatic form for so many who are struggling to find relief from pain that it causes unless or until doctors can get a better handle on how to successfully treat this disease that is often referred to in MRI reports as “incidental findings” and left at that for the patient to figure out on their own.

Doctors either tell the patient “they don’t cause pain” or “they rarely cause pain.” In order to determine if they cause pain, the patient can be told that nerve blocks have to be performed to determine if the Tarlov cysts are the reason for their pain. The problem is that “needles in the spine” often worsens a patients pain based on reports from so many who are members in several Tarlov Cyst Facebook Groups in America and in other countries.  They have joined these support groups to learn more about what they are living with and where they can go for meaningful help.

The Tarlov Cyst Facebook Pages have been of great help to me for learning what others are experiencing with this disease and the few, very few, doctors who have operated on Tarlov Cysts to not only bring relief from pain for a symptomatic patient, but just as importantly, to stop the erosive progression of the disease.

I would like to share a link to a foundation that is bringing greater awareness to Tarlov Cyst Disease. I have no connection to this foundation.  I do have Tarlov Cyst Disease, and it is symptomatic with me. 

Thank you. 

http://tarlovcystfoundation.org/about_us0.aspx

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Facebook Groups for Tarlov Cysts:

Tarlov Cyst Disease

Tarlov Cyst Disease Awareness

Life Before and After Tarlov Cyst Surgery

Tarlov Cysters

Tarlov Cyst Support

NE Ohio Tarlov Cyst Family

Tarlov Cyst Disease Education and Awareness Page

Tarlov Cyst Society of Canada Page

Websites:

National Institute of Neurological Disorders and Stroke

Wikipedia – Tarlov Cyst

Tarlov Cyst Disease Foundation

National Organization for Rare Disorders (NORD) – Tarlov Cysts

Rare Diseases – Tarlov Cysts

Yahoo Results for “Tarlov Images”

The Energy and Commerce Committee 21st Century Cures

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