So many questions!!

[smile2011]

Hello!!
I am so thankful that I found this forum.  I have so many questions.
I recently had a MRI ordered by my ophthalmologist due to a loss of vision in my right eye.Thank god for him, I have had symptoms for years with the doctors not helping or saying it was stress. Here are the result of my MRI:

A 3.6 x 3.0 x 3.0 cm complex cystic and solid sellar/suprasellar mass is identified.  The mass causes expansion and bony remodeling of the sella and extends superiorly filling the suprasellar region..  The mass extends into the hypothalamic region where it superiorly displaces the optic chiasm.  The optic chiasm is thinned and effaced by the ajacent mass.  The optic nerves are splayed as course toward the globes.  The mass abuts the cavernous sinuses bilaterally without extension.  The cavernous segments of each internal carotid artery are seen along the margins of the adjacent brain parenchyma without invasion.  Differential considerations include pituitary macroadenoma, craniopharyngioma and hypothalamic astrocytoma. Recommend a neurosurgical consultation.

So this is all I know. I picked up the report myself.  I from this point forward will be proactive in my health! I plan on traveling to Phoenix for treatment, but I need to know who do I make an appointment with first? St. Josephs hospital does have a pituitary center. I have so many questions and I have learned so much by reading this forum.  Are there other forums like this one?

[rumpled]

I would head out to California if I were you... there are larger centers there.
The diabetes and low testosterone sound like cortisol is impacted - that is my guess.
It sounds like a few hormones are being impacted but it is going to be hard to tell if the tumor itself is putting them out or if the pit is doing it from being squished and a last hurrah before it goes and gives out none - then you will be in trouble - deep trouble as you won't have any hormones...
I would hunt up a local neuro-endo if you can find one... I gave you some links.

[smile2011]

Thank you for the quick response. I have had blood work done. My gyno did blood work in Sept to find out why I was not having my period. My prolactin level was elevated at that time, I want to say it was 93. The doctor told me not having my period is not a problem, I should be happy.  For the lack of sex drive he could give me testosterone but I would grow a beard.  My primary care doctor did blood work in Sept too, I requested it due to fatigue.  From that blood work I was diagnosed me with diabetes. Why did it take so long is the million dollar question.  Everyone in Yuma know the medical care stinks. That's sad to say, but true.  I am approximately 2.5 hours from Phoenix or San Diego where I can seek better medical care.

[testdeprived]

i second asking the expert forum to read your mri. the surgeon there is a very very nice guy and even called me on a sunday!

[rumpled]

There is an expert forum here - and the surgeon may also read your fillms. Do you have any blood, urine or saliva testing?

I don't know about the pituitary center in phoenix - if I were you, I would go to NIH in Maryland or Boston and ask for Ed Laws. You have a very very large tumor. I hate to say this but the eyesight you lost will probably not come back - why did they wait so long to check you out?

Your tumor has also spread out quite a bit hence the radiologist cannot tell if it is a pituitary tumor or other type of tumor, so you need to go find a pituitary surgeon with a LOT and I mean a LOT of experience - as in 1000 or more surgeries under their belt.