wanted to stop by and give you the biggest hug ever..people dont realize loved ones are in shock and worried..I am drug route so cant answer on your question..as had large tumour a macroadenoma but drug option

Hi - I am sorry to hear you and your husband have to deal with this. Mine was also a macro - a 5cm beast that invaded my cavernous sinuses. What that means is that they could not get it all, and I had two surgeries. The first surgery was to debulk the main mass to take pressure off of my optic nerves to correct my vision problems (peripheral loss - which is how we discovered the tumor). This surgeo told me up front he would NOT operate in the cavernous sinus (carotid arteries and optic nerves are in there).

The second surgery was by one of the best in the country out in Santa Monica, CA, and his goal was to debulk what he could from the cavernous sinuses. He took out about another 75% of what was in there, but the residual was behind my carotid and around the optic/cranial nerves, so no cutting there allowed! My GH and IGF-1 numbers are still too high, so I am starting on lanreotide this month.

That all probably sounds scary - and that is understandable - but I am doing great and the surgeries were really not that bad. Your husband is going to be ok. The good news is that you have a diagnosis and are going to be getting treatment! Hang in there, and be confident that he is going to be ok. :-)

Aworriedwife,

Have a look here - http://www.dailystrength.org/c/Acromegaly/advice/6711314-size

Hi my daughter was 26yrs old dignosed with a macroadenoma, she had surgery to debulk tumour, we were told another surgery would not get any more out we were in oz at the time, we came back to uk, they wanted to try, but they never got anymore out, that was 4 yrs ago, she her tumour was also invading cavenous sinuses and cartoid arteries, her eye was getting bigger because the tumour was pressing on her optic nerve, she went straight into Radiation treatment because it was very aggressive because in the young these things grow fast sometimes. she tried lanreotide octreotide they were not working quick enough, she was put on Pegvisamont and her levels have normalised, that only took a month, so we thank God for that, it has not been easy for her, she has at last turned a corner, she has more good days than bad, thanks to a wonderful doctor in London who has helped enormousle with her pain. I remember at first when she was diagnosed I was so frightened, I had so many questions, but this forum will get you through so much, I dont know what I would of done without it.You and your husband will get through this, keep looking at the forum, your question will always be answered, Take Care

I'm sorry to hear that your husband has been diagnosed with acromegaly.

My tumour was 11mm x 15mm x 15mm that made it a macroadenoma too.

I had surgery over a year ago, and test soon after surgery suggested a good outcome. Tests at one month, three months, six months, and the latest test confirm that the surgery was a success.

So take heart, in the hands of a very experienced neurosurgeon there is scope for a very good outcome for surgery.

If the surgery had not been a success then I was prepared for monthly injections. I had been on them for about twelve months before surgery and found them fine. The trick for me was to make my injection day a real "good" day by going out for a meal in the evening and generally treating myself and others.

If you can get your husband to post. I've always felt that the condition was worse for my loved ones worrying about me. It's incredible how adaptable we are in being able to "tune out" things as a way of coping. We're all different though.

Good luck, and remember that the surgery will make him better. There are very effective drugs available to control the condition if the surgery is only partially successful. Biochemical control of acromegaly is likely in most people who are diagnosed.

Trys
www.acromegaly.wordpress.com

Thank you so much everyone for your replies. It's so comforting to speak with people experienced with this disease. I hope that in the future I can help comfort others as we gain experience with this disease.