Cushing's Info

My 19 yr. old son was diagnosed with a mass on his brain on 12/12/08.

On 12/16/08 he told me he could not see out of his left eye, after an eye specialist couldn't correct his vision with corrective lenses,he was sent for an MRI that day & 2 days later I got the news.

Within a week he was at Johns Hopkins for a consultation,the doctors told us he had 3.3 centimeter tumor on his pituitary gland & he was sent to an endo. doctor. Dr. Salvatori suspected Cushings right away.

Kegan had high blood pressure,huge stretch marks, significant weight gain & severe headaches. After he took the dexamethasone suppression test it was confirmed,his cortisol was 17.1. He had surgery on 2/12/09,the surgeons thought they got the whole tumor but 2 days later after an MRI we found out it was not so. He has tumor around his carotid artery they couldn't get through surgery.

Kegan went home 2 days later but was back in the hospital 2 days after that. He had a seisure/swelling at the base of his brain.No doctor can explain this,they say this type of seisure is usually only seen in pregnant woman.

Its still a mystery to us, my son has been on Kepra since surgery,they finally decresed the dose in half,from 1000mg a day to 500mg. Which makes my son happy. Kegan had many issues after surgery like severe back pain,he had to use a walker for 2 weeks & still has back pain now. He went through severe anxiety issues,which kept him from going to the doctors for months. He said he was scared of everything now,which broke my heart.

Kegan finally agreed to an MRI in June & the remaining hadn't changed in size,but he went for a cortisol test last week & it was 4.8 (dex test) & his blood pressure is on the high side again 132/78. I called his neuro surgeon today because he wasnt due for another MRI til Dec. Waiting to hear from them. My sons moods are starting to change again & I'm terrified he will refuse to continue treatment once again.

He told his endo dr on tues. "I don't like you"  (which is not like my son to be so mean)& my son refuses to see him again. So were changing endo drs.

This whole diagnosis is scary & I feel like I'm in the dark. I want my happy go lucky son back.