Hi UlrikeCT,

I'm not sure what yours should be but to give you an idea, I had mine tested last week. It was 130 (I'm not sure of the unit of measure) but it should have been 30 - I'm 35. From that I guess that yours is also on the high side.

Why were you advised against surgery just out of interest?

Hi Chili!
IN 2009 my endocrinologist said I should not have the surgery for several reasons: She said the tumors always come back, the tumor is too large to remove all of it, it is too close to the optic nerve, could cause instant blindness if the nerve is damaged. She also said most of the time the surgery causes so much damage that nothing will work anymore. Meanwhile I am going for frequent field vision tests and pituitary function tests. If the fieldvision should become affected surgery has to be done. In 2009 two different surgeons said the surgery is a must, my endo said "of course a surgeon would say that, surgeons like to operate, that is how they make their money".

I am disturbed that an MD endocrinologist would say something that flippant about surgeons. They are specialists and professionals. I do not think a neurosurgeon would be performing surgery to Make money. The physicians I have come in contact with care about patient outcome. I think these tumors grow slowly. You may want to get a follow up diagnosis or interpretations of your MRW

Ulrike,

Your endo made an idiotic statement about surgeons. I had a case very similar to yours.....1.2 x 1.0 tumor pressing on the carotid artery....I saw surgeons at u of m......they did not want to cut immediately....they gave me meds for two years to shrink the tumor a bit...and then they went in and did the surgery....with an excellent result!!! I got two second opinions before the surgery from Dr. Dan Kelly in California and Dr. Swearingen from Harvard/UMass....By the way they will review your case if you send them your MRI CDS and records and give you second opinions....These doctors are world experts in this field....and they told me that the doctors at University of Michigan were their colleagues and their equals!!!! They were concerned about me....and not just about doing surgery so they could make a buck.

I urge you to get a few opinions from very qualified surgeons...it is not too late for you.

Ledgy

I understand and empathize with you. I had similar experiences. Initially, I sought out the opinion of three surgeons and, believe it or not, got three responses! The one that said "maybe" but only to debulk it was the one who years later performed the surgery and removed the entire tumor (after it shrunk considerably in size and away from the carotid artery). He was ver optimistic after the surgery and my IFG-1 was normal. However, the HGH was not and now I will be taking meds again.... It is frustrating, but surgery is the only "cure" - when it is really successful and when the tumor doesn't grow back. That is what I hoped for... My endo. Had remained somewhat opposed to the surgery, afterward indicated that the smallest of cells would remain to cause my issue.... I agree with the others, surgeons don't all just advise surgery- however, if there is reason to believe it could remove the entire tumor, it's worth the risk of failing (there are other risks, but if you have a highly experienced trustworthy surgeon, I think they would not take on doing the surgery with high risk patients.