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Seanette's Story

I'm actually writing to find information for my 16 year old daughter, Alex. She has venous malformations on her face, neck, mouth and iintracranial. She's had 41 surgeries to date.

She's put on steroids after every surgery to help with swelling. She developed a hump on the back of her neck in May of this year. I wasn't overly concerned as I assumed it was swelling from having 5 surgeries this year.

I finally looked on-line and found what looked to be the same kind of hump that Alex has and was recently diagnosed with a buffalo hump. Alex has several sypmtoms of Cushing syndrome. She has difficulty sleeping, stomach problems, dizziness and back pains. We are overwhelmed as Alex has already had a tough road.

Can you please give me any helpful information? Can she be there a possibility of something more serious like adrenal cancer?

PLEASE help if you have any information.

Thank you,

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