Acromegaly Support Group

Hi again,

Don't be scared to undergo surgery.. As delicate as it is, it is not any worst than going to the dentist once you'll wake up from surgery. And in a few days, you'll be fine and will be back to normal in no time..It is the damage that Acromegaly does to our body that is the worst part.. Myself, i have to live with Muscular-squeletic pain, chronic fatigue and respiratory problems..If the symptoms that you have from Acromegaly don't take a big part of your life, then you'll be even better once your hormones will be controled.
Your friend CoolCat

Thanks Coolcat. What was the size of your tumor? Are your hormone levels controlled now? Were they able to get all the tumor? My doctor said he probably wont be able to get all of mine as part is wrapped around the carotid artery. I may have to undergo radiation therapy.

Thanks.

Hi MBritt,

I think my tumor was 3.5 CM diameter.. I still have 2.5 tumor ..They couldn't take it all out because it was too dangerous..I had Gamma-Knife Surgery last year and up to now, the tumor is still big.. From the doctor's report with my last MRI, it sais in the report that i have a persistant tumor.. But since Gamma-knife, it hasn't got any bigger.. So it's probably good news . My hormone level is ok up to now , but i don't understand why i still have symptoms from Acromegaly.. I have been suffering chronic back pain, joint pain and muscle weakness.. I even went for physiotherapy, did some gym regulaly, followed by a kinesiologist..I had to quit the gym because i was getting more and more tired and completely out of energy. Short of breath all the time too. Last time i saw my endocrinologist, he told me that it's possible that i have it harder than others, since acromegaly was quite advanced by the time it was discovered. Will i get a normal life back? i don't think so.. I find this year harder than last year , when it comes to have normal days without having some kind of problem, either fatigue or pain.
I don't want to scare you with my symptoms, since many of us are very different. But it's good to hear and learn how we all live with Acro. CoolCat

Hi MBritt

Sorry to have to welcome you aboard, but glad that you've luckily found this site so early on. Totally understand your worries, I too had huge reservations about surgery, not due to being frightened by it, but the reasons to have it if they can't cure you. Anyhow, I had surgery last week and can honestly say it's not that bad at all. There is surprisingly absolutely no pain from the operation site, and only today, 10 days on, is the first day I've had a bad headache (probably due to not resting enough)!

As in most people's cases, due to the size and location of the tumours, it's not possible for the surgeon to get it all out, but they can dramatically reduce the size of it, which in turn, should bring your GH levels down to a more normal range.

Spend some time researching Acromegaly, and finding the best possible neurosurgeon who deals with pituitary tumours regularly. The more experienced surgeon you can get, the more chance you have of being cured. My surgeon was seen as one of the best doing endoscopic surgery, rather than microscopic. If they use an endocscope they have a much clearer picture of the tumour and should hopefully be able to get more of it out.

Don't rush into anything unless you're fully prepared. The tumour has taken years to reach the size it is, so delaying treatment for a short time to get yourself together, will give you some breathing space.

I will have to wait a few weeks to have another range of blood tests to see if surgery was successful. I'm being optimistic but am already preparing myself to have to go back on the drugs to keep my levels balanced. Radiotherapy is another hurdle all together, and one that I will not jump at, if at all possible.

Take care and please don't hesitate to ask lots of questions, this site has helped me so much over the past few months, and have been the support line that I needed when I didn't know the answers.

Welcome! I agree with the advice from others. Are you talking with an endocrinologist, neurologist, neurosurgeon, or what? I assume they are talking about a transphenoidal surgery (through the back of the nasal passage). That seems to be the standard for most people, and the research shows that the more experience the surgeon has with that particular technique, the more successful they will be with fewer complications. Take time to do your homework and find the most qualified surgeon. If you want to give your approximate location, some people on this site may be able to help you. Also, take time to read a lot of the discussion posts and journals on this site. You can really learn a lot. Hang in there. It will get better!

Thank you everyone for your replies. I am in Houston and I am undergoing surgery at The Methodist hospital. My doctor is Dr. Baskin. He's well experiences in transphnoidal surgery and he uses endoscopy. He said proton beam will be used to treat any remaining tumor. Has anyone tried that? Thanks.

Hi!
When will you have surgery? I am scheduled for Sep 11th. I am scared too. Your tumor is larger than mine. Is your vision affected? Are you seeing an endocrinologist?
Ulrike

Hello UlrikeCT!

My surgery is on Sept 10th. Just a day ahead of you. My vision is affected. My opthalmologist said my optic nerves are still alive so once they take the tumor out, my vision should go back to normal. Thank God for that. I haven't seen an endocrinologist as my neurosurgeon said he can take care of that too for now. He's a great guy and pituitary tumors is his area of specialization. Good luck to both of us for our upcoming surgeries! :)

Mbritt

Hi MBritt,

I'm from Houston originally too. I agree with the others' advice. There isn't any big hurry to jump into surgery. My tumor was 2.5 cm and it's remants are wrapped around the carotid artery too. it seems to be an all to common situation with acromegaly when they finally discover it. Look at possibly using sandostatin first to see if it will shrink the tumor so they can get more of it out. I wish I had known that because I jumped into surgery as soon as I found out that I had a tumor. I wish I had tried the sandostatin to shrink it a bit first - maybe they could have gotten more of it. I had my surgery at University of Washington as I now live in the Seattle area, but I did go back to MD Anderson for a 2nd consultation. I chose them because since they are a world class cancer center, I figured they would have more experience with brain surgery. I talked to a neurosurgeon called Dr. Ian McCutcheon who said he could get more of the tumor out, but the endo I saw down there - Dr. Waagespeck, said he would not do a 2nd surgery and the radio-oncologist up here said not to do a second surgery either. They said the reward wasn't worth the risk because my acromegaly was well controlled at the time. So I take drugs.

It's frightening when you are first diagnosed but after 3 years I figured out I'm not going to die suddenly and you learn to deal with it.

Don't be afraid of the surgery. I too had no pain after the surgery and no headaches with it. If it's transphenoidal, just be prepared to lose your sense of smell for a while. It took me about 2 months to get mine back because the nerves had to heal. They didn't tell me that before the surgery. Ask them what to expect with healing, what nerves they will have to deal with, how long you'll expect to be in the hospital. Do they think you will need gamma knife and which drug they want to use on you.

And ask anyone of us here if you need support. We have all walked down that road and we will be glad to share our experiences.

Northwest2

I found out while researching options for different types of radiation therapies that PROTON BEAM radiation is safer for your optic nerves and protecting your vision because it is given in a lower dose than the the gamma knife. The flip side is that you have to go for several treatments, but it sounds like you need to get some things done ASAP to restore and protect your vision. MD Anderson was specifically mentioned during some of those consultations when i was doing research, too.

Best of luck to you. Life will get better for you once the surgery is behind you and you have found an awesome group of caring people here who will try to give you support.