Acromegaly Support Group

How long has it been since you had an MRI some of these tumors grow faster that others and all the symptoms you told me about sounds like yours maybe bigger that you think. MY doctor said your tumor is pretty big before it affects your vision because that happens when it is pressing on your optic nerves. I hurt the same way you told me about until I had my surgury and my pain stopped almost immedently. I could only do a few daily chores and I hurt so bad I had to lay on a heating pad at the end of the day.

I do think Debbie 125 has offered some good advice on this about your tumour, have you had a field vision eye test,but so you dont suddenly panic The hospital you are at is very good I know im there as well but I think flouncys on tablet form I am drug but it took a few attempts and checking before it made a difference.As to working no person is ever the same and yes this condition can really make it hard for some to go back to work and what treatments you have to have.I am selfemployed which means I can work a bit better around my hospital trips and my son who homelearns.I think a call to the benefits agency may help who can advise.JJx

thank you, the last time i had a scan was the summer last year, so i dont know when i should be having another one. i have tried disabillity allowence as my doctor advised but they refused my application. so i think i might try a call to the job centre or benefits again. i had a field eye test a coupla of weeks ago and they said that my vision is fine. thank you for your advice x xflouncy

I know that the hospital we are with wont hesitate if your tumour was really close to the optic nerve they wont mess around.It did take some time with my drug dose and they are happy.I am not against surgery for some people this is maybe the best route.For me not.I think we have a condition that loves to be the boss and is quite a bully whatever treatment we go for its a battle and we are not on an easy road.I think people dont realize how hard it is for us we have alot of things we have to deal with not just a tumour.I think even with surgery.I have meet someone who has no tumour and has been bad with acromegaly.I think people who cant work should not have to worry about money we have so much to deal with.But lets hope the benefits agency could help JJx

thank you. for all your advice x x i appreciate it. x

Hi, Have you tried applying for long term incapacity benefit? this is given even if you do work. We have just been awarded this.

believe or not i actually just claimed for this yesterday and they said it will take 2 weeks to go through . the man on the phone said that he thinks i will beable to claim. so i guess thats just a waiting game now. will let you all know how i get on. thank you for your advice x x

I had a visual fields test done my tumor was pushing on my optical nerve. After the surgery it was not as bad.

its no go on anything.so i hope that the doctors can sort my arms out. then i can get back to work, even if its just part time.