Acromegaly Support Group

hi MBritt..A very warm welcome to you.The good side if you can call it a good side lol is you have time to think about you... you are now going to be put with a medical team and its going to be a partnership.I so think my Encro is so pleased when he goes in and sees my file we got a good partnership I drive him nuts LOL.Not because Im being awkward but because I want the best for myself because I am in a battle with Im going to be honest for myself I feel that Im in a tough battle with a sneaky conditon...This conditon although it has a name affects us in different ways.The best advice is read some members journals go through the discussions send a message to a member or put like what you have a discussion up it is a small group but there is someone around to help.The path you take though is your unique journey.I myself am drug option only Im doing ok the tumour has shrunk to well under half size.You mention wanting more children the person to catch up with is a member called Flouncy because of wanting children so shes definately one to message.The main thing and the most important you will find is get the best team behind you be your ADVOCATE dont be afraid to ask questions.Take care all the best JJx

Hi JokeyJ! Thanks for the reply. It makes me feel better that I'm not the only one going through this. Did you undergo surgery? Mine will be in 3-4 weeks. I need to get that scheduled today. I need to be positive for my son's sake. Thanks again!

Hi,

Welcome to our group. I can personaly say that you don't have to worry about surgery..I have a much bigger tumor in my pituitary gland, and surgery wasn't anything worst than going to the dentist . I too was very worried about surgery, since it's a very delicate proceedure. My only advise would be to make sure it is Transphenoïdal surgery.. In a few days, you'll be fine.If your local hospital doesn't offer that kind of surgery, it is worth going to another city to have it.. I went out of town to have transphenoïdal surgery and don't regret it one bit...living with Acromegaly is the worst part.. But we have to live with it. If you do not suffer from muscle-squeletic pain, chronic fatigue and respiratory problems like i do, then you're a much luckier person than i am..Keep us posted !!
CoolCat

I suggest you take the time to go back and read our early journal entries.....Some things we all have in common is that we have had to learn a lot about treatment options so that we can educate doctors and help them come ot the best conclusions for us...one thing that I insisted on was to recieve treatment of octretride beofre my surgery....it shrunk my tongue and also made it so the tumor literally was easy to scoop out......more and more we are hearing of people who are taking meds before they do the surgery...each case is different....oh and the skill of the surgeon is critical...it is ok to ask how many surgeries like thi she has done..also if he does it alone or wiht a neruro nose guy...etc....happy reading and welcome

Hello MBritt and welcome!

I'm awaiting surgery too and have two wee ones under 3 and not looking forward to leaving them when I'm in hospital but I guess if it means a cure I'm for it. As for having more children, I had undiagnosed Acromegaly during both my pregnancies and other than developing diabetes as a combined result of the Acro and pregnancy I was OK. Both babies were large but this was probably the diabetes. All the other niggles I've had I thought were due to getting older - carpal tunnel syndrome, aching joints, really dodgy knee and tiredness, but I'm only 33! It's reassuring to know in a way that there is a condition causing all this and not just me falling to bits with age! I'd feel positive about future pregnancies if I was you as you will be well taken care of. Best of luck and warm wishes, Rosie6

Hi Rosey! Thanks for the message. I had transphenoidal 2 months ago. I had a CSF leak as my tumor's big (2 cm). I'm ok now though. I started radiation to kill tumor remnants 2 weeks ago. 3 more weeks to go :) Hope all's well with you! :)

Hi again MBritt.

Glad to hear that your surgery is over with - phew! I have a tumor around the same size (1.8cm) and will have to wait a long time for surgery as the surgeon in the know is off due to personal circumstances and its unclear when he will be back. My Endo thinks its better to wait for the skilled person familiar in this type of surgery so I guess that is what I'll do although it worries me a bit!
Sorry that you are having to have radiation therapy - hope you are feeling OK with it - keep focusing on the end date and celebrate when its done with. Best wishes, Rosie x