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  Recommend Message 2 in Discussion
From: PTResearcher2

Welcome to the boards, Tab, we're glad you joined us, but sorry you have to be here.
 
You are correct in wanting a second opinion from a neurosurgeon that specializes in pituitary tumors. Where are you located? If you are interested in seeing someone in NYC, You may want to consult Dr Kalmon Post. Do you already have a consult scheduled with Dr Brem of Johns Hopkins? Who are you scheduled to see in NY?
 
There are several neurosurgeons that specialize in pituitary tumors listed on our "Helpful Doctors" link, according to the state they are located in:
 
 
Since you have a large macroadenoma (an inch would be about 2.5cm), your doctors should definitely be more concerned about removing it, especially since it is causing mass effect by pressing on the optic nerve. You should consider finding a neuro-endocrinologist that specializes in pituitary tumors. You need to be seen by specialists, not PCPs, neurologists, or general endos.
 
If you are waiting for an appointment with Dr Brem, call and let them know that your symptoms have changed (headaches and pressure.) They should be willing to move your appointment up. Have they been sent your MRI films and records? If not, you need to send them ASAP (to all neuros you wish to consult.) You should also keep copies of everything-including your MRI and MRI report. You have the right to all of your records and you need to keep copies. Have you had all your hormone levels checked?
 
I know this is a shock and it is a lot to deal with, but you need to be pro-active in your care. You need to determine who you wish to consult, you need to research each neurosurgeon and the technique that they use.
 
We have a lot of recommendations and suggestions listed on the boards, please take advantage of that information. If you have any questions, please do not hesitate to ask. We have a list of questions for neurosurgeons that you may want to ask them.
 
Take care. You're in my prayers.
 
Meri

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