This Tarlovcystsurvival group is an on-line support group that allows communication among All who suffer from this Rare Disease.

We exchange personal thoughts and feeling and share Our Journey on this Road of Tarlov, Its a long and twisting road, but we are here to help you though the good and bad days as it can be very lonely travelling this Road,

We have Members who have had Surgery and Others who are soon to have Surgery, All advice is truely Welcome.

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We also support Members who have decided Not to take the route to Surgery,
Each Member is an individual and the Choice is Theirs and theirs alone,

We have many symptoms due to these Cysts, Lower Chronic back Pain scicatic Type pain down either leg, The Tarlov Meningeal cysts depending on their location can compress nerves to the Bladder or Bowel or Both causing deficits .The dominant syndrome was referable to the caudal nerve roots, either sciatica, sacral or buttocks pain, vaginal or penile pain and paraesthesia, or sensory changes over the buttocks,perineal area,and lower extremity.Urinary incontinence occurs as well. "


We all suffer Chronic Pain which in is a disease in its own right,because of this Rare Disease so we can advise and share helps us on any given day,

Each person has their Story to tell never worry about making mistakes We know and Understand.

Anything suggested on this Support Group or opinions offered are not intended to be medical advice or to take the place of any of your Drs advice,
Nor is it to diagnose or treat your specific problems. we can only share what we ourselves are going through,
Welcome and look forward to getting to know you better
Sharon Owner/Moderator

If you are ever worried about certain treatment dont hesitate to ask your Family Dr
We dont endorse any specific Dr, Hospital, or Medications