Tarlov Cyst Disease Fundraiser for Trish Tillman

$2,828raised of $10,000 goal

Beneficiary: Trish Tillman Organizer: Friends and Family

This fundraiser is closed
After several years of enduring much pain and unsure of what was causing it.  The symptoms got worse. ( symptoms started in her left foot and gradually affected both legs and lower back)  Many tests were done and finally an MRI showed several large cysts attached to the spinal cord.  These cysts are unique in the fact that they are actually the nerves and nerve roots ballooned out and full of spinal fluid making it difficult for them to just be aspirated or removed.   These cysts are eroding the Sacrum (lower part of vertebrae) and pressing on nerves that affect the waist down (mainly lower back, legs, and feet) The cysts have completely eroded through the Sacrum bone and surgery is inevitable.  If left alone this can cause paralysis, and or the inability to walk without a device, and fractures of the spine   This disease significantly decreases quality of life if left untreated.  There are only a few surgeons that specialize in this surgery and that have spent their time researching this rare disease.  The surgeon that has a wealth of knowledge is in Dallas, Tx.  As you know this will consist of flying there, having the surgery and staying there for at least 10 days with travel expenses, medical expenses, etc  
with a lengthy recovery   This surgeon has had many success stories and this is really the only option of increasing quality of life 
This disease does not discriminate. although it is found mostly in women. It can be found on the Rare Disease website (ORPHAN) and also on the website Tarlov Cyst Disease Foundation
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