First, I am very sorry to hear about your loss.

Is there a reason they feel like they could damage your gland? My husband had his second operation 7 weeks ago, but there was no greater risk with the second surgery according to the doctors. The second surgery was an absolute cake walk for him. Since the passage had already been opened once, it was very easy for them to gain access again. They did make the opening a little larger, so they could really explore. This ENT used no packing, not even the kind that dissolves. He woke up the morning after surgery and was exactly like he was the day before surgery. Other than the bending and lifting limitations, it never even slowed him down. He experienced none of the "slowness" or disorientation that he felt the first time. He didn't even lose his sense of smell. We went into the 2nd surgery knowing there were no guarantees levels would normalize, but for us, it was worth the peace of mind knowing that if elevated levels persisted, it was not caused by tumor remnant. We still don't have IGF-1 levels back yet, but he's feeling great, has no symptoms and I think his features are shrinking even more. I think his attitude has even improved, because he knows there isn't a tumor in there anymore.

I don't think the risk is any greater this time around, I just think this surgery is more "optional" than the first one, so they wanted me to have all the facts and weight my options. My first surgery was horrendous (9 hours, CSF leak, etc.), and the recovery was long and hard. I'm hoping this one will be more like the surgery everyone else seems to have.

I have two different tumor remnants: one that is inoperable because it has wrapped itself around the optic nerves and everything else in there - that one's been shot with the gamma knife. The other one is next to the pituitary stalk (too close for radiation), but obviously very active. They think they can get it. I've learned not to be overly optimistic; I doubt I will be completely cured after this. My tumor was the most invasive they'd ever seen, so I think even if they remove this remnant there will likey be tiny remnants too small to be seen. My hope is that I will need less medication, and when I have to go off the pegvisomant again for pregnancy, my IGF will be closer to normal.

I'm really sorry to hear you miscarried. Sending hugs and best wishes for you to kick acro's arse in round two x

Hi, hope your feeling better, my daughter had an aggressive and invasive pit tumour, first surgery could only get some of it out, like you her was wrapped around catiod arteries, also next to optic nerve, she had a second surgery, but unfortunately the remnant was so tough, they couldnt get it out, but it was worth a try, surgeon said that sometimes they fall out like blanmange, as they are so soft, she had no problems with 2nd surgery no nose plugs, she is on pegvisamont, also had 5 weeks external beam radiation her levels are good, and she has been on medication nearly 5 yrs, she was 26yrs old when diagnosed. GOOD LUCK

Just found out that at 4 weeks post-op from the second surgery my husband's IGF-1 started dropping again. We still need it to go down about 100 points, but I'm excited that there was movement in the right direction. I'll let you know what we find out after the 12 week check.

Well, I'm alive! My surgery was 10 days ago, and I feel really good. This recovery has been nothing like the first surgery. I was out of bed and walking the following day, and even though I had a lumbar drain (again), I felt pretty ok even in the hospital. The surgeons said they got everything they saw (except for the remnant around my carotid and optic nerves - which they said looked totally dead). My levels the following morning were 11 (GH) and 599 (IGF-1). It sounds like there might be a chance of them coming down further? My hands were shrinking for the first week, but now they seem to be swelling again. My only issue post-surgery is that I have some chest tightness and shortness of breath that has been there since I woke up from the procedure.

Glad to hear you're through it ok. How you doing now Suzanna? Got my fat fingers crossed for better results this time x

Thanks molehands :)

But I just got bad news from my endocrinologist. The pathology report came back, and none of the "tumor" tissue stained positive for growth hormone, which most likely means that whatever they removed wasn't tumor - just scar tissue from the last surgery. And my GH is 17. Two weeks out, it should be almost non-detectable, from my research. Why were the surgeons so positive they got it? And why have my fingers been shrinking the past few days?

I'm just about done hoping.

:( on dear:(

It's a surgeon thing....... They have to think they rock at all itmes. Don't like to be beaten. They really shouldn't make declarations til all results in. So........ When will they do an igf-1 ? Odd then that your noticing changes despite GH. could that supposedly dead tissue remannt still be active then? Or are they thinking extra pituitary source? I'm sad for you, you have had rough ride. (((((( hugs)))))) Thankfully you know pegvisamont does the job so you have it to fall back on but was hoping for better news for you . Take care of yourself xxx