I really would like to hear experiences from people that have been through this procedure. Anyone?

Chile, I too had multiple surgeries in 2001 after a year on daily shots. They got as much of the tumor as possible, but since it was wrapped around the optic nerve and pressing the carotid artery they could get all of it. In 2002, I then had the Gamma Knife procedure at the recommendation of my team of doctors. I was still on the daily shots and my IGF-1 levels were hanging in the 700 range.

The procedure itself is not that bad, but expect a killer headache afterwards. I went in a 6 AM, blood work, and prepped. The measuring halo was screwed onto my head. Not all the painful since they deadened the spots where the screw pierce the skin. Kind of feels like you're wearing a band around your head that presses on the 4 screw points.

Then I spent the 2-3/4 hours in the MRI tube getting the areas mapped in relation to the halo that they wanted to be targeted by the gamma rays. Once the mapping is done they feed that information into the gamma procedure room control station. They lay you down on the sliding table part of the machine. I was on my back and the halo locked into something they called the concentrator. I called it the cullender because that's what it looked like. It focuses all the individual gamma rays, which aren't lethal, into those targeted areas in a lethal dosage. The idea is that it will kill the tissues that are targeted. In my case it was the remaining tumor mass and most of the pituitary gland. 2.5 hours later, I was done. They took me back to my room where the Doctor removed the halo..........he told me that I would most likely get an instant headache. He was right. As soon as the screws were removed and the pressure released, it felt as if a small atomic bomb went off in my head. Since i was sitting on the bed, when I passed out the two adis standing behind me caught me and laid me prone in the bed with my head raised. About 3 hours later, I woke up, was checked out and we left........total time about 10 hours. Done as an out patient procedure.

Make sure you have someone to drive you home, cause you're not going to feel like driving.

As to the results......they frist said it would be 24 -36 month window for us to see any measurable results. Then it was 48- 60 months.......at my 6 years anniversary, the doctors said if we were going to see any improvements, we would have seen them by now. Every window period I was taken off the shots for 4 months and then checked. Each time my IGF-1 levels came back up to the 700 range.

Since about 2009 when they switched me to a monthly shot in place of the daily shots, my IGF-1 levels have normalized in the 120-127 range, but if I don't remain on the shots, it starts climbing back up.

My team of doctors have concluded that we've seen as much good as we're going to see from the GK and that the residual tissues are still stimulating the remaining gland enough to produce too much HGH in my system. I will be on the monthly shots the rest of my life. So far there has been no visible growth in the area of the tumor, so another attempt with surgery is not considered at this time.

For me the GK was not successful. My only other option is the monthly shot.............that doesn't mean that it won't work for you. Each of our cases are different and we each have to do what is best for ourselves.

Hope this helps and good luck.

Lifespalette:
Thanks for your answer and testimony. Apparently GK is something to try in my situation.
Doctors here told me that the success rate is 50% in a 2 years period.
Greetings.

I had one regular open surgery in 09 which removed maybe 60-70% of the tumor. Taking Somatuline depot and cabergoline brought IGF into high normal slightly high range. GK was recommended which I had in March 2012. So far, no change, good or bad. Others have had success, some not. It is relatively safe. Some say that, even if GK doesnt lower IGF, it may retard growth/re-growth of the tumor. My GK experience is much like Lifespalette, but the frame did not give me a headache during or after the procedure. The spikes did sting going in, but that didnt last long. Went in at 6AM and was out by 1PM. I was given a mild sedative for the procedure. For about a week or two, there was some swelling and bruising from the spikes, even around my eyes. Compared with regular surgery, which left me with chronic headaches and loss of most of my ability to smell, GK was easy. If recommended by your doctors, I think its worth trying. As always, use a center with a good track record. Good luck.

I have not had GK but was in a track to get it so I researched it. For one, there is now known a need to stop medication for a six month period prior to the procedure or it will not be effective. That may not have been known in the past and may be a factor in the unsuccessful procedures. Also, there are more and more proton beam radiation centers becoming available and they are more precise and spare more of the peripheral tissues and are especially useful when working around optic nerves and carotid arteries. I will avoid radiation until I have no other option, but if I have to have it I will choose proton beam if at all possible unless a better option has been developed by that time.

Thanks rrxing and Papillon for sharing your experiences.
I am currently using Somatuline (though its utility is not very clear) so the comment about the effectivity of the procedure and medication is very interesting for me.
Papillon: Do you know where to find more information about this?
Greetings.

Somatuline and cabergoline were withdrawn for 2.5 months before, and started up again after I had GK. I think the center I used was the first to publish that this strategy is more effective. Though somewhat controversial, the biology does makes sense - a fully active and metabolizing tumor is more susceptible to radiation. Some centers that say there is no benefit to stopping drug treatments are nonetheless having patients withdraw GH inhibitor medications before GK. There is general agreement that a few months without medication will not be overly detrimental in the long run. Either proton or photon (gamma) radiation can be delivered as multiple, sub-lethal weak beams which intersect at the target (supposedly with 0.5mm precision) to produce a lethal dose of radiation. The theoretical benefit of proton beam is that it stops at the target, and does not continue past the tumor like gamma radiation. In actual clinical practice, I dont know how strong the evidence is yet that proton beam is superior to GK, but it is probably better than conventional, multiple treatment x-ray therapy. Good luck.

rrxing:
What is the center where you received treatment?
I am going to mention this to my doctor as I am planning to have the treatment in the following months and I am currently taking Somatuline. He didn't mention anything about suspending the drug so it is a good idea to ask his opinion.
Greetings.

Hi Chileno01!

Here is Gamma Knife - A review:

"Better results have been obtained in recent years since it was realized that treatment with bromocriptine and somatostatin protects against the effects of radiosurgery. Treatment with such drugs must be stopped before using the Gamma Knife."

http://www.gknife.gr/articlefiles/articles/1gamma%20knife%20neurosurgery-%20a%20review.pdf

I haven't had GK either but since I already had 2 surgeries I am also candidate.

Hope this helps and good luck with GK!

Harmony

Harmony22:
Thanks for the link! I talked to the neurosurgeon in charge of the GK and he was not very familiar with the Somatuline case. He told me to ask to my endocrinologist, so i'll talk to her and send her the paper you quoted.
Greetings!

Mayo Clinic. There is a GK facility with excellent doctors in my area, but a place like Mayo simply gets many more rare disease cases like Acromegaly.

I had Gamma Knife just a few months ago, in 2013. The procedure went smoothly, uneventfully. For a couple of days or so afterward, my scalp tingled, but nothing else too much happened. I was told it would be months to years before complete results would be known. But now, let me tell you about my situation before this...

I had had surgery to remove my first pituitary macroadenoma, which turned out to be mixed, and not merely a prolactinoma. I did well on a couple of drugs, including cabergoline. Things went well. Unfortunately, my eye crossing did not depart, but it was not unbearable, anyway.

Eventually, I was told I could stop the cabergoline. Later my doctor suggested that had been a mistake - something we are all entitled to, after all. The tumor returned. I had a choice to make... surgery again, radiation, medications, or nothing. I chose radiation. The doctors were well-pleased by my choice.

Headaches persisted some time after irradiation, but eventually they did increase. However, other, somewhat mild symptoms began to appear. A bit of arthritis. Increased sweating. Swarthiness and skin tags. Inability to do much without it becoming necessary to sit.

I am scheduled for November of this year for additional MRI and other tests. I will then have an evaluation and drug regiment laid out. But meanwhile, even though I think Gamma Knife was successful to a degree, I think it is not going to suffice to eliminate the problem. I'm thinking my scenario may prove to be similar to Lifespalette.

Oh, my eyes now sometimes lock in a crossed position. Since it was my doubled vision that led to a rushing of my surgery in the first place, this is the biggest concern for me. It is, after all, possible to go blind if the 6th optic nerve receives sufficient pressure damage.

My last comments, paragraph 4, sentence 1 should read: the headaches did eventually DECREASE.

chileno01 - Did you end up going with the Gamma Knife? How did it go?

I'm faced with this exact same decision right now after 3 surgeries and multiple medications.. I had Somavert coverage a few years back, and it was the only thing that worked for me.. but then I lost the coverage when my employer at the time changed our benefits plan. Currently i'm on 40mg of Sandostatin LAR (2 shots once a month), as well as .5mg of Cabergoline/day. The lowest my IGF-1 has been on this combo was something like 396.. but it typically hovers in the 450-550 range.

Met with the Radiosurgeon again yesterday.. but I'm kind of torn on whether to accept it. I was basically told it's a 40-50% chance of normalizing IGF-1 levels after 1-2 years.. and a 50% chance that my pituitary will die in ~10 years, at which point I'd need to take all the supplemental hormones.. testosterone, cortisol, etc.

I'm a big numbers guy.. and I'm not too excited about those numbers.

Hello Birchy:
Yes, I had GK 1,5 years ago. In the first control (3 months after) my IGF-1 and HGH were almost identical. In the second control (11 months after) my IGF-1 dropped almost 45% and so did my HGH. Doctors told be that the best result is achieved between 2 or 3 years after the procedure. Nowadays my IGF-1 is in 429 and my HGH is 1.37. I am having monthly injections of Somatuline 120mg, mainly for the symptomps because this medicine apparently is not helping in lowering the HGH and IGF-1 levels.
Unfortunately Somavert is not an option, since it is not available in Chile, and buying it outside is unaffordable.
Greetings.