Finding the best neurosurgeon

[MelissaBrampton]

Hi all,

I am very pleased to have found this community and all the wonderful people who offer help such as 'rumpled'.  I am a 27 year old female from Brampton, Ontario (Canada) with an invasive pituitary macroadenoma.  I've been having symptoms for more than 15 years but all chalked to stress.  I have a 9 year old son.  Does anyone know of a neurosurgeon in Ontario who has done at least 500 pituitary tumour removals (preferably more) with excellent outcomes?  

My endocrinologist is refusing to tell me who he will recommend saying that because I don't pay for it, I will be lucky to have the first appointment with one who is available.  I am really distressed about this and need help.  I've read that surgeon skill and type of tumour are the best indicators of outcome.  I can't control the tumour but the surgeon I want to make sure knows what he or she is doing.  

If anyone knows the name of such a surgeon or more than one, please let me know.  

Thank you.
Melissa

[Louise4444]

Hi Melissa,
I am in the same boat as you. I have had a migraine for 2 years now. Just this past July they finally decided to do an MRI and found the tumor. Now I am waiting for them to do another MRI to "investigate further". I then have to wait until Christmas to see the neurologist for the results. In the meantime, there are no medications left that help dull the pain, and this thing is getting a whole lot of time to grow bigger than the 3/4" that it already was in July. I guess what my question is...does anybody know any medication that will help so that I can at least function a little bit until Christmas?

[rumpled]

Don't be treated by a neurologist. They are not trained in pituitary. Please find an endocrinologist and a neuro surgeon trained in pituitary. A neurologist often will not give you correct treatment protocols.

[CarolynBaggoo]

Hi Melissa,
I don't know if I am too late with this advice. But Ottawa has one of the best in the world, Pituitary Surgeons. His name is Dr. Charles Agbi.
I recently had him remove a Cushing's  Disease tumor, (supposedly the hardest type of pituitary tumors to remove). He was in every way awesome. You can't go wrong with Dr. Agbi.
Carolyn B
Ottawa

[ladyT38]

I know that this has nothing to do with your question concerning a neurosurgeon, but what are your symptoms, because I also have increased prolactin in addition to a host of other symptoms that have been categorized as anxiety disorder. I reside in Calif. so maybe you can look up UCLA or Cedar Sinai Medical Center both in Los Angeles and locate someone to help you, I wish you all the best. God Bless

[rumpled]

I know of several people in Canada who had surgery, but I do not know the names of their surgeons. It is a shame, though, not to have your endo on your side. One of my friends actually came to the US and paid for her surgery as you are correct in your assessment.

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