My only advice would be "don't listen to naysayers". My husband had a 1.8 cm macroadenoma, GH of 128 and IGF-1 of 1128. Not a lot of hope there for a surgical "cure". Found a top surgeon with lots of experience. Surgery went better than expected. We are almost 8 weeks post op and GH is .87 and IGF-1 is 446 and falling. His joint pain is gone. This alone is a miracle! Sleep apnea is either completely gone or greatly reduced. We are waiting a while to do another sleep study. High blood pressure, gone. High blood sugar, gone.
Researchers and doctors work with odds, and that's understandable. But, even if there is a 10% chance of a cure, someone has to make up that 10%. Why not you?!
Best of luck!!! Go in with the best attitude possible. Look at it this way, how would you feel if you had a 50/50 chance of winning 1 million dollars? Those would seem like pretty good odds.

Please let us know how you do!

Thanks, ww, for your very kinds and optimistic thoughts! You are right! It is too easy to listen to the pessimists! I am going to follow your suggestion ande go in there with a positive outlook! I will let you know how it comes out.

Ledgy

Im not surgery route drug route..each person has to look at themselves and do the route which is best for them..what works for one may not another..I think what is good when I was first diagnosed they was just for surgery saying its the way..well it was not the way with me ..but what Im pleased about is people are researching and the medical profession will maybe try drug to shrink tumor before operations..Each of us are so unique with this conditon because some have different problems ..I like more that people are looking at finding the best surgeon..I will be thinking of you leggy I think its not so much the surgery many have felt fine its the weeks after to make sure you take it easy.

Hi Ledgy,

I wish you good luck with surgery and fast recovery. My advice is that doctors closely monitor your electrolytes and urin output after surgery.

Good luck and take care,
Harmony

Hi Ledgy
Surgery is the best route if you hope to ever be 'cured' of this disease and for the vast majority of us it isn't anywhere near as bad as we had imagined - the recovery time varies, but for most is pretty fast and usually totally painless.

I was a real pessimist myself, didn't expect to have a successful outcome and told myself that I'd probably just have my tumor debulked and be back on the injections.

I'm glad I didn't listen to MYSELF, had more faith and believed that a cure/remission was a real possibility. Two years on I'm still in remission and THANKFUL to everyone one this site who patiently advised me that surgery was the best route after having had the injections.

I wish you all the very best and the only advise, is go for the BEST possible surgeon. Not the one nearest or most convenient for visitors or your endocrinologist, but the one with most experience and hopefully one that has been recommended by someone who has been cured/remission of this disease. There's no higher recommendation than that.

All the very best

Ledgy

All the very best for the surgical route. I may not have been "cured" but I felt SO much better after surgery. Get the best surgeon you can (their bedside manner matters far less than their skill with the knife!)

Percentages are a strange way of looking at the world. Cabergoline only "works" for around 30% of people according to some of the trials, although (post operatively) it is working for me.

John

Thanks for all the kinds words of support.....

I did send my records to boston and la and speak with two of the big name surgeons, but in the end i elected to go with the home team here in ann arbor, michigan. Their approach is the same and the guy i am going with does 50 0f these surgeries a year, so i feel i am in good hands!

JohnD1 i am so glad the cabergoline is working for you....it has really been a miracle drug for me for many years....i even went back to it after the sandostatin failed and i felt better almost immediately, even though i only take .25 once a week!

Best wishes to all! And thanks again for your support.

Ledgy

Good luck with your surgery tomorrow, Ledgy.
Be positive!!! & hugs to you.

Good luck Ledgy!
We all hope for a complete cure, but many of us still have high levels after surgery and end up on injections. Overall, I feel much better since my surgery, which was almost 4 years ago.
Mish
P.S. I like "Aworriedwife" comments.

I see that I am posting on your day of surgery so you are likely in the recovering mode. I trust that all went well for you. My husband's surgery was a month ago and he is doing well. He hasn't been to the endochronologist since the surgery but there is physical evidence that there is significant improvement. He is no longer sweating excessively every night, his breathing is much improved and there is some change in the fullness of his face. All the best..

Hi Everyone,

Well, I am day 5 postop and it has been tough, only because i keep trying to do too much!

Overall, I am doing well and very hopeful! I received a avery enthusiastic email from my surgeon today, saying my day 1 post op test result fo prolactin......was zero! Only trace amounts. They are waiting for the hgh, igf stuff later this week. I know these early test results don't necessarily mean much, but it is encouraging!

I keep coming back and rereading all of your words of support and encouragement. I want you to know that they mean a lot to me and they have helped me a great deal....

Thanks again and best wishes to all.

Ledgy

Glad to hear that you are making a great recovery!!!
Lots of hugs!