3 years for me. Mine was acromegaly @2cm and the really bad first health problem was super high blood pressure but the feet and fingers had been swelling really good before that. SAndostatin for about the same.

I have wondered where are all the people are that have had it 15-20 or more years but might not want to know but i am sure many are not of the internet generation I assume.

I was diagnosed, accidentally, in 2007 - like others, many years following several symptoms. Mine had been about 1.5 cm. Until now, it hadn't shrunk. Now, finally, I'm preparing for surgery! There's a chance that the whole thing won't be removed, and even that I will lose my vision (which is a far bigger risk). I am confident in the surgeon, and several friends are praying for me. It is scheduled for less than 48 hrs. From now, so I am hopeful that this struggle with the insurance company will have been for the best. Surgery is the only cure, but I had been stable on meds.

I was officially diagnosed in February 2012. I am unable to have surgery at this point because the tumor is too small. Basically undetectable but is in my pituitary. I started having symptoms in 2011. Thankful for an early diagnosis. I'm currently on 30 sandostatin once a month and cabergoline 2x a week. Good luck Tennisuan with your surgery. You'll be in my thoughts.

It's been 7 years since diagnosis for me at age 29. Hard to believe! Mine was 2.3cm macroadenoma. Presented with physical symptoms a few years before diagnosis. I may have had it since my late teens though? I'd stopped growing by 16-17 and was experiencing chronic depression since then...which disappeared with surgery in 2006.

Since 2007, surgery only for me.

I was diagnosed this year. My IGF-1 was 1300 at the time of diagnosis and my tumor was 1CM. I had surgery, and most of the tumor was removed. Unassisted, my IGF-1 reduced to 400. Since then, I have been taking somatuline and I have leveled off at 250. I have had no adverse side effects from the somatuline (other than being tired in the hours following the treatment).

Cleveland, I hope and pray your continued improvement is the road ahead of you.........for some of us, the initial improvements slowly filtered off and the cumulative effects have forever altered our lives. Like you I was blessed with the opportunity to continue working all most 9 years after being diagnosed in my professional field as well. But, the stress of pace begin to add up and in 2009 I basically had to retire due to the health issues.........take care of yourself. Stress, I have come to believe is one of things we can least afford in our battle with this beast.

Being diagnosed in 2009, my acromegaly was 31mm x 20mm x 31 mm. Surgery removed alot of it, taking the tension off my optic chiasm, leaving the nerves there damaged. The remainder of the tumor is surrounding the carotid artery. They started me with Sandostatin in 2010 after surgery (Dec. 2009), and a few months later increased dose to the 30mg. Later we added the cabergoline. This year we changed to somatuline and added estrogen and progesterone (Trying to change the livers management of the other drugs....) Almost forgot, 6 weeks of radiation in 2010 also. We have fought hard and this year I actually had a couple of months with normal IGF-1,and most others have been below 500. I'm happy with the somatuline, these injections are alot easier to tolerate for me, the sandostatin was always at least 2 weeks of soreness, swelling and plain painful injection sites.

My daughter diagnosed in 2006 had surgery a week later followed by external beam radiation treatment, the radiation treatment has killed off the thyroid, and she is now on levothyroxine, she has days where she doesn't want to get up, she works 20 hours a week, but for how long I don't know, but she wants to keep working for as long as possible. She is on Pegvisamont injections.