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Tarlov Cysts, An ignored RARE Disease

This board is dedicated to all who suffer, or are affected by the debilitating symptoms of Tarlov Cyst Disease. All of the website information pinned here is to make research for patients much easier to access and includes; Local Canadian and International Research, Support contacts and groups for improved patient access to information, and also to assist with increasing social awareness of the many barriers facing Tarlov Cyst Patients from around the world!

Rare Disease "Care for Rare" Decal for sale! Buy and display your Care for Rare Ribbon Decal and show the world you care for rare disease patients..... Please share!

Order your Rare Disease Ribbon Decal and show the world that you Care for Rare! Rare_disease_-_care_for_rare_decal_small

($3.00) Rare Disease Ribbons (with pin) Choose from Plain or Daisy. WHY ZEBRA? In Medical School, students are taught to diagnose patients based on the more likely condition. It goes along with the old adage of,

I've donated to help a young boy raise money for Cloves Disease on GoFundMe - $610 raised by 14 people in 1 day. Please give and pass it on!

Order your Rare Disease Ribbon Decal and show the world that you Care for Rare! Rare_disease_-_care_for_rare_decal_small

($3.00) Rare Disease Ribbons (with pin) Choose from Plain or Daisy. WHY ZEBRA? In Medical School, students are taught to diagnose patients based on the more likely condition. It goes along with the old adage of,

Please Donate, Share and Show you Care for Rare Disease!!! Tarlov Cyst Society Awareness Campaign on GoFundMe - $370 raised by 4 people in 6 days.

Tarlov Cyst Society Awareness Campaign on GoFundMe - $100 raised by 2 people in 2 days! Please join in our efforts. Every dollar can help change the life of someone suffering from rare disease.

3 Rare Diseases = Wheelchair van needed on GoFundMe - $0 raised by 0 people in 16 hours.

An informed, and compassionate support group for Tarlov Cyst Patients, moderated by and attended by Tarlov Cyst Patients. Join the group to access their open, honest, and unmatched Patient and Patient Family Support!! No one needs to suffer alone!

Tarlov Cyst Disease Foundation.. An excellent first step for newly diagnosed Tarlov Cyst Patients, and a leading resource for access to professional Tarlov Cyst Disease Research and Education. Please Support the Foundation efforts by becoming a member or through donation support to assist with advancing research!! Please help the Foundation continue to help Tarlov Cyst Patients Worldwide!

Tarlov Cyst Disease Foundation.. An excellent first step for newly diagnosed Tarlov Cyst Patients, and a leading resource for access to professional Tarlov Cyst Disease Research and Education. Please Support the Foundation efforst by becoming a member or through donation support ti assist with advancing research!! Please help the Foundation continue to help us!

Dr. Frank Feigenbaum, one of the few Neurosurgeons in the world with the knowledge and experience to treat patients suffering from Symptomatic Tarlov Cyst Disease..

  • Ron Nelson

    he offers some hope to a excruciatingly painful disease. my wife suffers every day. there are only 3 neurosurgeons in the united states who will attempt to treat this horrible disease. it is a very rare disease and often missed without an mri

  • Sherri Jones

    Very true Ron. I had surgery with Dr. F in Cyrpus through the AIMIS Spine program and although my nerves may never recover, his skill ensured my sacral cyst will never be able to cause more damage than it already has.... but please, always be cautious. I know we all get mad when Doctors say it's not the cyst causing the pain, but at times they're right. Tarlov Cysts can be symptomatic and become extremely dangerous to the person who has it, but it can also be an insignificant pouch that means nothing and it can be hard to differentiate between the two. I wish you and especially your Wife all the best in your journey. If you're interested we have a support group on facebook; Tarlov Cyst Disease Society of Canada. Look us up and we'll be more than happy to help you in any way we can. Our group welcomes patients and family alike.

  • Debbie Anderson

    Sherri. When was your surgery? I'm concerned because I still ache everyday. I'm on pain meds. I've had surgery almost year ago. I know I had a lot of damage. Could u please give me your insight?? I'm in Orlando. I flew to Dallas.

AIMIS Spine is one of the few internationally recognized spine specialty programs that offers surgical treatment for Tarlov Cyst Disease. I had surgery on July 7th, 2011 through the AIMIS Spine Program and I will always be grateful for the support offered by the AIMIS Spine staff, my Surgeon, Dr. Frank Feigenbaum and his assistant Debbie West, for their knowledgeable and compassionate treatment of one of my Tarlov Cysts. A unique spine treatment experience!

Canadian Citizen; A blog full of Tarlov Cyst Information.... and Canadian Issues