Hi, my first post as well. But hopefully I can be of some help.
My timeline is as such: surgery (w/out an ENT), still poor levels and MRIs, Sandostatin and Cabergoline (no impact), radiation therapy (no impact), and then finally another surgery (with an ENT this time, different Neuro as well)
I'm not going to sugar coat it, and it's different for everyone, but the first 24-48 hours after surgery were absolutely miserable for me - both times, different surgeons, different hospitals. Once you push thru that, the recovery is no problem. I was in the hospital the first time for 5 nights, second surgery I was in for 3 nights.
My recommendation is (unshockingly) do your research on the surgeon. My second surgery was with a surgeon who SPECIALIZED on pituitary tumors and used an ENT surgeon for assisting and creating a larger hole. It was much more successful than my first surgery with a neurosurgeon who didn't specialize in them.

Hope this helps.

Smithdej21 thanks for your reply. May i ask what country were you are in so i can compare health systems. I'm in the US, New York area.
Are there any restrictions that you have to follow after surgery. I am a pretty active man and I want to know how i should plan my future. I have some what of a foggy head and i am not as clear as i think i should be. Like i have a sinus issue going on. Did this clear up with the surgery? Did any of your other symptoms clear up?

Hi Twomore:

I had the surgery in February 2014 at Mt. Sinai Hospital in NYC. My neuro was Dr. Joshua Bederson - my endocronologist said that I needed the very best, most experienced surgeon for my issue and he was right - Dr. Bederson was amazing. He works with ENT Dr. Govindaraj who is equally as qualified in his field. I had a deviated septum which Dr. G. repaired during the tumor surgery and I can breathe so much better since then. Was in hospital for 3 days and recuperation was about 2 months - I wanted to make sure I had a good recuperation period as I was taking care of two of my grandkids before surgery and wanted to return to help with them again, which I did. Dr. B got as close as he could to remove tumor but unfortunately some residual tumor remains. I was put on Somatuline Depot in October 2014. My IGF-1 is back to normal and most days I feel pretty good (and that's with arthritis or whatever is causing pain in my knees). I also have sinus bradycardia from the somatuline and now have been diagnosed with mitral valve and tricuspid valve insufficiency (this just happened so I won't know what cardiologist plans for this until I meet again with him in mid-May - still get very tired day of injection but that's basically it - even with all this I am very glad that I had the surgery because my quality of life is still good - Pre-surgery I had almost every symptom of acromegaly including a slightly enlarged heart - all swelling went down - my face looks like it did when I was a teenager but with more wrinkles (I'm 65 now), no more headaches - and as of May 2016 my heart went back to normal size - whatever you decide I wish you the best of luck. God bless you.

I forgot to add that when I first started with the Somatuline Depot I got severe head and tooth aches, stomach cramps, loose stools, was extremely weak and sleepy - over the past two and a half years the side effects have significantly weakened - however it is causing a slow heart rate now.

Thank you for you reply. I don't mind the shot even if it is a giant needle, but the cramps loose stools and diarrhea really screw me up. I am 50 and am back in school. I have to plan my shot around my schedule. I am very happy to hear that the Somatuline side effects got better. I was just wondering how long it will take to be back to normal, as in not running to the bathroom every 30 minutes. The side effects get better as the days go by. but it has been unpredictable up to two weeks after the shot. It really tears my insides out. I do think that they are getting less as the months roll on.
I am happy to get your take on the surgery. I am in north jersey but i got so much going on i don't know if I can add the surgery right now. Perhaps in a few months when things get settled. All the doctors make it sound like it is an out patient procedure. I have had this tumor since 1995. It was 1 cm then. It didn't give me any trouble. but i started to have strange pains and other things going on about 8 years ago. High blood sugars and jaw not fitting. I lost my athletic look and low energy came along. I went to the Endocrinologist because I was losing my memory. And bang HGH through the roof. Now it all makes sense.

Twomore, yes there are restrictions afterwards, but only for around six weeks. I was hiking and back to playing hockey within two months no problem.

To answer your other question, first surgery was done at University of Wisconsin and the second was done at HOAG in Newport, CA.

Thank Smithdj21! I was concerned that it was going to restrict me from some sports. I can handle a few weeks. Question? Did you feel dizzy or off balance physically or mentaly? And if so did the operation help. I have a very fuzzy mental situation. I have had it for a long time. I don't know if it is related to the Acromegaly, or one of my other health problems. Any comments would be helpful.

Twomore, just joined the group as well. I've probably had Acromegaly since 2006 (that's when I can retroactively look back at symptoms). I was diagnosed in early March with IGF of 1016, with a 1.5 cm macroadenoma up against but not invading the cavernous sinus. Had the surgery in late March and surgeon was able to get the whole thing. First two days of recovery were totally awful, rest of the first week was miserable. After that it gets better quick. They do put physical restrictions on for six weeks though. Don't let the surgery intimidate you. At this point, six weeks later, I'm feeling totally fine. Post-op MRI showed no visible tumor remnant. I had a non-glucose GH test done a week after surgery and it was 0.6, down from 30 day of surgery. IGF was already down in the 500s. Now I'm anxiously awaiting the results of my next blood tests. I also live in NY. Surgery was done by Theodore Schwartz at Cornell. He's the rock star of pituitary tumors (in my opinion). No way I was waiting on surgery. Was there a reason your endo was ok with medication before surgery?

hey ny127127. I asked for the medication. I got a ton of stuff going on and things were going back and forth between doctors. I deal with the VA and a doctor in the real world. it's funny though they make you wait for an appointment for like 9 weeks and then they want to go now now. I have known about the tumor for 21 years. didn't have any symptoms. Although they never looked at it from the acromegaly point of view. always worried about my vision. Vision fine you are OK. I got little kids and my wife works two jobs. I'm in school and i have some serious issues with my ex-wife and my very adult kids. Plus i got a separate eye problem that is causing my reduced vision. There is only so much i can take on at one time. Sooooo i figured that if i could control the acromegaly with medicine that i would be in a stable place. They always make it sound like bing bang boom and your done. like going to the dentist. But i always knew that it was more involved. but maybe in a few months. i will have the operation. hopfuly i wil be able to clear my plate.

@Twomore, in response to you inquiry regarding surgery: I had two transsphenoidal surgeries both in 2007 at 18/19 years old. When I had my surgeries, they took no longer than 45 minutes to an hour. I spent the night and left the following morning. They took fat from my belly to pack in my nose post op, so that incision site was a little sore. they had given me morphine in the Post Anesthesia Care Unit as well as a prescription for percoset to take home. Recovery wasn't too bad. The first 2 weeks post op I wasn't able to lift anything heavy, sip through a straw, blow my nose or sneeze, and no strenuous bowel movements as to not rupture the surgery site. They did inform me to keep a look out for any clear fluid coming from my nose as it could be Cerebral Spinal Fluid. I had zero complications, personally. I had awful side effects on the Somatuline and Octreotide which I went on after surgery since I still had residual tumor around my carotid artery and optic nerves. I am currently supposed to be taking 2omg Somavert 2-3 times a week but I went off it for a while as it was causing lumps to form under my skin at the injection sites. I hope the information I provided helps you make a decision as to whether surgery is a good fit for you. I was pretty anxious going in so they had to give me some Ativan IV so that I could calmly go into the OR. I had Dr. Brooke Swearingen at Massachusetts General Hospital. He is one of the best Neurosurgeons!! https://neurosurgery.mgh.harvard.edu/swearingen/ Feel free to look into him, I'm not sure if you're in the New England area but if you are, keep Dr. Swearingen as an option.

I had surgery in 2006 just 10 months after my twins were born. It took about a year and a half to get back on my feet. I would get very tired. I probably Went back to work too soon but we needed the money. All my strength went into the job. I remember my kids, after they learned to walk, would bring me my cortison necklass as a way to say, get up mom and spend time with us. I feel I lost the first 2 years of their lives and that will always make me sad. I finally did regain my strength and get off the cortison. In 2012 I had cyberknife treatment and it took 4 months to get back on my feet. My legs would get to where I had to concentrated to walk. I got afraid that I would never be able to go to the store as when I got to the back of the store I would have to rest before I could walk back to the front. Sometimes I gave a list to the kids, then 7, and had them shop and me wait at the register. I was sure I had gotten Secondary Addisons but it went away. I still get sandostatin shots to control my FG1 level which are still a bit above normal and probably will for the rest of my life. Besides the shots, I have decided not to have another procedure. I guess I am afraid that the next time I will not recover. Not to say surgery or cyber knife is bad. My levels were over 100 before the surgery and are not around 30. If I had not had the procedures I may not have gotten to see my twins get as old as they are now. So the problems I had were probably worth going through.