Hi ! I am a concerned mother who's 18 year old daughter has just now been diagnosed with a very large Primary Sacral Arachnoid Cyst. She has been in pain for several years now. We went from one doctor to the next trying to find out why she was having severe leg pains and lower back pains. Then here came another problem... she started having severe pain when her bowels would move. Finally we were sent to a Chief Neurologist and he did a MRI and found it. We were relieved to finally find out what was wrong with her but here we go starting a new journey. We were referred to a Neurosurgeon and he stated that her's was very rare and he really did not want to attempt the surgery or he was not sure what the best surgical option would be for her. Needless to say this has changed my 18 year old daughter's life. Now we are searching for the best Neurosurgeon that specializes in these cyst so she can get it removed. Cleveland Clinic looks like our best option at this time but if anyone should have any advice or feedback it would be appreciated.