Unsuccessful pituary surgery for acromegaly HELP

I have Acromegaly. Dec 09, I had surgery to remove a pituatary adenoma and surgeons found it was adherrant and hard and like throwing cement on a wall, so they did not get it all out.   My IGF1 was about 363 going into surgery and now is 235.  I am considered a borderline case, but I dont feel like one.    Six months after the surgery, I developed intolerable headaches, which are still with me,  May 10 - current..  My endocrinologist will not put me on any acromegaly drugs until my number goes to 100 points above normal.
My forehead is growing again, along with my hands and feet.. my pain is intolerable and the surgeon will not operate again, one more, until my numbers spike.

I wonder if there is anyone out there who could help me, because my IGF1 numbers are high, but not off the charts, I feel I am not getting the attention I need.
Has anyone out there ever been through something like this, because I do not know where else to turn to.. I figure maybe if someone with Acromegaly can share some stuff with me, it may help me to a livable life...
Thank You

[soldy]

Hi,Your surgeon was correct.He removed part of calcified gland.Rest of calcified gland can be  removed by reabsorption into your system.You need help from good endo.

[horselip]

Are you going to a top pituitary center of excellence? I would think that you should be entitled to a second opinion on medical treatment. Esp if you are having active growth in your forehead, hands and feet. PM me if you want the name of my doctor.

[rumpled]

I don't know about calcified whatever - but you need to get to better neuro-endo and get on the medications that you need, and stop the growth.

I don't know many with Acromegaly here, however, I will PM you some information.

In the meantime, as sad as it is, take pictures to document  your changes, get copies of all your testing, and if your IGF-1 is elevated, they should treat you post op, especially with physical changes. There is always reporting the doctor to the state boards.