Wednesday, November 19, 2008

Viv, pituitary bio

I can still go for walks everyday, bike in moderation, I boogie boarded over the summer even skied last winter. It seems that recovery time is long and cure rate is low.

I really need suggestions from the Cushing's network.I have diagnosed with a pituitary 7mm tumor, and cyclical Cushings. I have had two episodes in the past 18 months that were more intense (moon face, bloating, humps, fallen hair, high blood pressure and pulse. I have always had a problem with facial hair and removed it with laser, but it came back. ).

Right now most of the symptoms are gone, except for the palpitations (my pulse ranges from 76-90, I drink lots of water to control it...) and sleeping between 5-6.5 hours. I am really thin, I eat only healthy, antiinflamatory foods as a way to control my reumathoid arthritis and it has worked!

An MRI found waht it seems to be a "7" adenoma on my pitutary gland I had two suppresal venous samples, the second one supposedly confirmed it, but only the radiologist who performed has interpreted it. Eventhough my endocrinologist was good regarding diagnosis after a year and half, he has not provided with opportunities to discuss the disease and the long terms effects of a possible surgery .

Both my primary doctor and the endocrinologist are sending me to see a neurosurgeon in the group. I went to a pituitary specialist but she is going out of town and also needed better access to lab results.

I am very discouraged and as I hear about my peers' experiences after surgery I am not sure if I will better off. I am cosider going to a Cushing' disease specialist, I am running out of time with my medical leave from work, but I don't want to rush to make a decision that will have such an impact on my quality of life.

Please help!

Email Viv

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