Pituitary adenoma

[lady2121]

I am a 39 yr old female with a history of lupus and recently diagnosed with a pituitary adenoma on August  of 2009. I had frequent headaches and blurred vision. The size of my tumor is 12mm, I am currently experiencing pressure in my head , nausea, fatigue. Should I consider surgery? In January of this year I was started on cabergoline 0.5 mg that made me very sick with extreme nausea and severe headache, by week three of taking this I had to discontinue. I am  currently under a rheumatologist care only.

[rumpled]

I am so sorry you met up with stupid doctors that thought that small tumors were too dangerous to remove and now the large one, which is, is now killing you. The big brown spots may be elevated ACTH. There are doctors in Canada that can help you - but you would have to work at the diagnosis. It is sad to have a rare disease where it is poorly understood and the doctors do not even want to try.

[Julie251]

There are lots of people with pituitary tumours but I don't think there's any such thing in the world as a pituitary forum.

I too have one that they have been watching grow now for several years because when it was wee tiny they said it was too dangerous to remove.  So now that it's big it would be a sure killer.   It was just a prolactinoma at first but now I think it's also acromegaly.  First my feet, hands, nose bridge, and everything grew huge and  my teeth spaces had to be filled in.  My feet have become so huge and deformed that many days I can barely walk and the toes spasm all night.  Now I have big brown spots on the side of my face, have developed cancer, have heart problems, sweat to death, and sleep too much because I can't stand staying awake.  It's too hard to stay awake when my eyes constantly pop out of alignment.   I suppose that they figure that now that they have let it advance that far I'm not worth sparing anyway.  Just started taking cabergoline awhile ago after pleading for it for awhile but it seems to be making the vision worse so I'm not sure what to do and I'm almost at the point now where I don't care anymore.  It wouldn't be pleasant living as a blind person anyway.  I know I've become negative regarding life, but the way I see it, it will be over in a couple of years anyway.  Don't mean to scare the rest of you.  Just want to tell you that if you live in a province where they can't afford to treat you, it might be best to move to another before it's too late for you also.

[rumpled]

You should see a neuro-endocrinologist. Your tumor is large, considered a macro-adenoma, and needs to be removed ASAP.  You also need to see a neuro-opthomologist to get a good eye check.

You need to get hormone checks to find out what type of tumor  you have as well so you get the proper treatment post surgery.