@lisalucier sorry for the delay I was on a work trip. The appointment wasn’t that great. I thought Mayo Clinic would have a resolution. Her cyst is in the left side of her temporal lobe and is the size of a small orange. Neither one of them felt it was the cause of her headaches. She is in her room and really only comes out to shower or use the bathroom. They asked us to give it another month or two, waiting for amitriptyline to kick in. The problem I have is she is entering her 3 week on 25mg age 13 & my friend takes 10mg and felt relief after 2 wks. I never questioned the doctors to see if they were arachnoid specialist. All that I’ve read is very controversial on treatment and surgery. Interesting enough I got online and watched a Dr. Don Kim from Houston and he stated that if it is a constant headache and gets worse probably the cyst. Also if a person has tried imtrex or migraine meds with no relief prob a change in cyst and need to operate. All things I didn’t know before appointment. I truly felt they listen to the results and opinions of referred doctors and don’t form their own opinion. Plus a large cyst can be dangerous. I don’t imagine they would like to have their child go home and continue being in pain another month or two. She has been out of school since Jan 7th. So, now I’m debating on trying to see doctor in Houston or somewhere closer. It’s hard when you see you child in constant pain and they look to us for help. We want to put trust in doctors, but I think I should have asked more questions. Thanks for checking in.

Jen

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