Acromegaly Support Group

Hi welcome firstly to our little family.I remember when first diagnosed I wanted to hug everyone because I had been told for so long that there was nothing wrong with me it was such a relief.This is not meant to scare you but you are on a bit of a journey still yet to go emotionally and physically.The best thing is you are on here and I feel people on here have been so supportive.I think you need to listen to ask questions what treatment is good for one may not be right for someone else.I asked lots of questions and the route I took for me is right for my situation.The others will back me up we will help you all we can JJx

I had surgery for a large pituitary tumor in Nov 2007. I was terrified but the surgery (thru my nose) went well. There is still residual tumor and I'm having a MRI on Monday and another appointment with the neurosurgeon. Not sure whether he'll recommend radiation or another surgery or just wait and watch. The surgery helped my vision somewhat and helped my sinuses but the headaches are still almost consant. Best wishes to you in your treatment!

Well,the validation that something is actually wrong was a triumph for me as well! I could battle anything that they threw my way, except (would you like to try antidepressants?) Like I was a nut case. Not that meds aren't needed for many people but I knew I had a medical problem just didn't know what!!! Read through some of the members history entries and you will feel a great deal of comfort and support! Welcome!!!

Hi Magdalyn, I felt exactly the same too. For so long I had been feeling exhausted and in pain and even I was convinced I was just getting lazy or going mad but to be told it's a medical problem does make you feel so much better. I too had surgery Nov 07 and am just awaiting results but the surgery seems to have gone well. I'm still ot right and if I eat sweet things all my symptoms come straight back but I am SO much better than I was and I can't decide if this is just the acro or residual tumour so we'll have to see. I would recommend surgery wholeheartedly. It's not always successful but I felt instantly better, within a couple of hours of coming round. Even though it took me a couple of months to recover it was definitely the best thing I've ever done. We are a friendly lot on here and I think because it's such a rare condition it helps to have other people to talk to who understand exactly what you are going through. Lots of love x

Hi,

My daughter felt instantly better after the surgery, swellings all went down, for some its 100% successful for others with residual tumour not so good, so thank goodness for medication.I know radiotherapy is the last resort, and my daughter had to have it, but she is having better days now, and has taken on board about the sugar.

welcome to the family!joining this site has been very good for me and hopefully it will be for you as well.ive had acromegaly for 14 years and up till just a month ago i really didnt know as much as i know now.i mean sometimes i sit back and say wow so im really not crazy and im not the only one thats been through it. but my course of action was surgery to resect the tumor and 6 weeks of radiation followed.if you need to talk let me know.wishing you the best of luck!!!!!!!!

Sorry, have only just seen this post about tumour resection and radiation,didnt realise you have had radiation on head. Take care