My husband had surgery July 2012. He has felt better and better everyday. I recommend surgery. If you trust your surgeon. Then you can always take medicine to shrink the rest. Best of luck.

Thank you so much. I guess I am just a little freaked out about what I should be doing. :)

I'm not aware of anyone who felt the surgery caused their acro/tumor to be stimulated. Generally, it appears doctors try to at least debulk the tumor because you get some improvement in IGF-1 levels, and subsequently, in symptoms. My advice? If you are having symptoms, treat it the best way your doctors recommend. The longer you are having symptoms, the more damage it is doing all over your body. I know it is scary, but the potential risks from doing nothing is scarier.

Thank you Jeri. I am so frustrated right now and I am not sure what to do. I sought the help of a very top notch and highly respected neurosurgeon, because I was told the tumor was possible wrapped around my carotid. My IGF-1 is 313 (reference range was 50-197 for my age). I had another IGF-1 that also showed modest elevation(284) The new doctor said I needed an OGTT with growth hormone. This came back totally normal. My baseline GH was 1.8 and it suppressed to 0.7 after the glucose. The doctor told me that I do not have acromegaly. I totally disagree. My shoe size has gone from a 7C to an 8 1/2 EEE, my face has totally changed (nose, chin, brow ridge), I have thickened oily skin, sweating, skin tags, etc. Now he doesn't want to help me. I am at my wits end and not sure what to do now. Ugggghhhh. Any advice? This is so depressing and frustrating :-(

A neurosurgeon wouldn't be making the diagnosis of acromegaly. Who is your endocrinologist and what facility are they at?

My only thought would be that there is one possible advantage to delaying surgery, and that is the possibility that meds will shrink the tumor and make it more amenable to being completely removed during surgery....this is what happened to me. At diagnosis, my tumor was 1.2 x 1.2 centimeters....and wrapping around the carotid or at least pressing up against it....I tried cabergoline for several years which shrunk the tumor by about thirty per cent...and then they were able to remove all of it! I was very lucky because my tumor did not have fibroids in it, and it came out like soft oatmeal! I don't know if the cabergoline softened it up or not.....Anyway, good luck...

Ledgy

You might want to discuss this option with your endo and surgeon....

Ledgy

Thanks so much for the info. My endocrinologist says I have acromegaly and prescribed cabergoline. I thought I would just have surgery so I haven't started it yet. I also heard it can make the tumor tougher to remove because it becomes "stickier". This obviously wasn't the case for you. Did you have any side effects from the medicine? Do you mind telling me who did your surgery?

P.S...worried wife..the neurosurgeon was weighing the risk/benefits of surgery or not for me. He requested the OGTT because I had only had the IGF1 tests. Once he saw a normal OGTT, he told me I don't have acromegaly. The endocrinologist says I do have a mild case of acromegaly. He was not willing to do surgery without the elevated OGTT because he felt that rules out acromegaly. As you can imagine, it has been a tough week.

Tmed, I understand your frustration completely. My story is the same,mildly elevated IGF-1, plenty of symptoms, normal GH suppression. I took over a year for them to finally be convinced I have acro. Only in my case, they can't find the tumor. 4 MRI's, CT scan, PET scan, and zippo, nada showing up. Next step is an octreotide scan, at leas the new endo is trying to find the tumor rather than just putting me on the meds and telling me go away. Anyhow, you are not alone, many in this forum have had the same experience. It' sad that we have to fight so much....

Thank you so much. I tried to find any other disease that would correlate to my symptoms and it always points to acromegaly. This is definitely not a disease to be treated by a doctor that is only able to think "inside the box". I am glad to know I am not alone :-). This support is keeping me sane.