pituitary surgeon in Chicago

[bluejohn]

Hi all,
I was diagnosed to have macroadenoma in Jan, and has been busy seeing/selecting doctors. Anyone has good suggestions on neurosurgeons in Chicago? Thanks.

[rumpled]

In the case of a tumor so large, I would contact the insurance company and tell them that you need someone skilled to work on the tumor due to the risks involved and that they need to pay someone out of network and get that process started. They will do that if no one in network has the experience and sorry, 100 will not cut it for a tumor like that. The PNA and other people can advocate for you as well as a competent neuro-endo - you need super duper experience and so you need a NEURO-ENDO and a very very experienced pituitary surgeon. Call up the 800 number and ask for complex case management - get a nurse on the case and get someone to OK for you to get to a pituitary center or you and they will pay much more (and it may not be a price you may not want to pay in health) and push push push to get the proper care.

You cannot get just any surgeon for this - you need experience. That tumor has invaded areas where there are blood vessels and nerves - and the larger the tumor, the more likely the stroke and the risk to the optic nerve. A good surgeon - a GREAT surgeon can get you out of the surgery safely with both eyes intact and that is what you need! I don't want to scare you but in a way I do - because I have seen people after going to less experienced docs - and the docs have removed the entire gland (NOT a good idea) or given the people a stroke, or blinded them - so you really really really want experience. It may take a bit of kicking and screaming at the insurance company - but please do it.

[bluejohn]

Hi rumpled,

Thanks for your help in advance. My endocrinologist said I should remove it first and then go for a medication if necessary, due to the size of the tumor (>2cm). I just found a neurosurgeon in a medical group, he has done >100 cases in total, and that's the highest number I can find in my medical group/insurance. For this reason, I have switch to a new endocrinologist in the same medical group, however he appeared to have none experience with pituitary endocrinology...  It worries me a little bit on the post-surgical treatment. Anyways, I agree that I should run for a cure, not wait till everything is too late...

[rumpled]

A GH tumor is a tumor that DOES reduce with medication (at least if it is acromegaly)... so, er, why are they not trying the meds to at least debulk first?

Some tumors do have inoperable parts - and then radiation has to be done - but in your case, I would run, not walk, to a pituitary center - and get under the care of a pituitary endocrinologist that would know the medication that can be given to try first as that is now the preferred treatment. Any part that is in the cavernous sinus would never be operable - but the medication can work. It is hard to find a good pituitary doctor. I will send you some links with sites to help get you information. I cannot direct you one doctor directly per se (I don't feel comfortable doing that) but I can help you with information.

[bluejohn]

Hi,

yes, you are right. I have a GH-type macroadenoma, it is extending into the right cavernous sinus. It is not any good...

I met a neurosurgeon in Chicago, he explained nasal operation procedure. however, he feels a bit risky to remove the part behind the vessles, which means I will have some residuals there. I don't have vision problem, no headpains. Due to the size of the tumor, he suggested to have the operation first and then start from there. Before knowing I have this tumor, I behaved like a normal person, being able to swim, play basketball, etc.

Well, I'm not sure which doctor I should go to..

[rumpled]

Are you working with a pituitary center? What type of tumor? Is all of your tumor operable and do you know if it grew around the optic nerve and/or carotid(s) or down into the cavernous sinus?

First and foremost, make sure that the neuro-endo has properly determined the type of tumor and that any medical treatments that can be used can be tried first - so it is essential to know the type of tumor (so just saying pituitary tumor is misleading - there are many types).

With a larger tumor, you may want to travel or at least consider travel if you have a complex lesion - as experience is the MOST important thing with surgical outcome. So you want 500 lifetime, and 50 in a year at least - and you want to ask specifically about experience with larger tumors, leaks, complications (strokes and optic nerve issues) and what tools (endoscopy is best right now) as well as some other things about packing, infection rates, follow up post op, is an ENT involved, etc.

I am only a layman - but I have had the surgery myself (I had two removed) and know many people who have had the surgery - most well, but sadly quite a few with complications so it really pays to pick well. Some complications do come from the tumor and anatomy so you really do want a primo surgeon. There are lists of docs in some of the health pages links (on the lower right) where you can start - just make sure you have a lot of your own data in hand.

Please keep us posted!