the biggest hugs ever yes it can make youre head spin..lots to think about and of cause the worry of youre loved one..theres a discussion on here called a short documentary which was done by a lovely member shelley..you might like to watch that..

My husband was diagnosed at 45. He had some of your husband's symptoms and many more. You are beginning in the right place. You're researching on your own. There's so much to learn and reading about this disease in advance makes it much easier to understand what the dr.'s are telling you. Where are you located? Things are very different in the UK and Canada than in the US, so that will affect advice on what steps to take to get your husband the best medical care.

I totally understand your head spinning. My husband was diagnosed just over a year ago and had two surgeries in 5 months. The good news is that his snoring/sleep apnea, diabetes, high blood pressure and fatigue have been resolved. His joint pain is diminished, but still there. Some damage is just permanent.

And Jokey is right, the video documentary "120 minutes" is a great place to start.

Keep us informed about your husband's test results and try to take a deep breath. This disease is a roller coaster with plenty of ups and downs.

We live near fort lauderdale, FL. My husband and I are self employed=crappy insurance. $7,000.00 deductible! I have watched the video 120 minutes. Really good. Thanks for your replies. I will keep you updated and I am going to try and get pictures uploaded.

I feel your pain, we have a high deductible with our insurance too, but it's very good insurance. We pay alot, but we have great freedom with choice of doctors, which enabled us to seek out the best care. If these tests come back indicating your husband does have acromegaly, I'd seek out a teaching hospital which a specialized pituitary department. It may possibly mean travelling out of state, but it's highly worth it. I believe Mayo Clinic has a location in Florida. I'd look into that to see if they have a pituitary center.

So, its been confirmed. He does have Acromegaly. We go talk to the Endocrinologist Tuesday at 345pm. I am getting my list of questions ready. Aaaaaaaaaaaaaaaah!!!!!!!!

So sorry to hear your news. I remember well the day the endo. confirmed our fears. The good news, this may very well be the end to many or all of his symptoms and the start of a better life. Get yourself a very, very good neurosurgeon. My husband's tumor was 2.6 cm and tucked into his cavernous sinus. His numbers were off the charts. His prognosis for a surgical cure was slim, but it looks like we may very well have achieved that. The jury is still out. Overall heatlh and quality of life has improved more than words can express.

hold hand up its been quite a fight but I was quite in a bad way..but Im doing well..yes I do have rough days as its a chronic illness but how I was to now Im ok..just wish they would make my drug tablet form..just thought I would give you positive feed back..

Thanks jokey and worried wife. I've been on the phone all day. Have 2 appointments so far with neurosurgeons. #1 neurosugeon in Miami is out of our network but his office said they would only charge us in network???? Sounds weird but my insurance company said just get it in writing. Also, have appt with #2 surgeon in Miami and he is in my network.

If you ever want to talk...I am a recently diagnosed and treated (surgically)patient...also a healthcare adminstrator that has extensive knowledge of both the clinical and financial aspects of all of this...feel free to email me off line and we can discuss your husbands situation or if you'd like I would talk to him directly ..let me know if you want my email address ...and good luck with all of this.

Welcome to the group! I am so glad you found us so early in your journey. I just got home last night from the Acromegaly Community weekend event in Las Vegas. Be sure to visit their site on Facebook,too. It is another good source of information. Critical factor is surgical experience of neurosurgeon (It doesn't have to be with specifically "acro" tumors. Other pit tumors count, too.) However, endo needs to be well-versed in treating acro specifically or willing to do his homework and stay up-to-date.

Thank you so much. I have narrowed my search down to a neurosurgeon at University of Miami neurosugeon department. There are at least 6 doctors to choose from. Of course, I can't get an answer over the phone on how many pituitary tumors they have done. I have an appointment with one of them June 25 but I called another ones secretary and asked her to please give her boss my husbands info so they can tell me which doctor to go to. I do not want to go there on June 25 and then they say "so and so would be better for this surgery, I would make an appointment with them. Then I feel like we wasted our time. Hopefully, somebody figures out something before our appointment. Thanks again. Oh and my husband needs double hernia surgery too. In your opinion would you have been able to go thru another surgery right after this one? Like in a week or two?

No to your answer of another surgery that close together albeit hernia surgery is not that invasive...I'd wait a month at the minimum...he can live with the hernias though it is uncomfortable.

Surgery set for July 5. Liked the surgeon. He has done 50 surgeries a year for 17 years. Jacques Morcos. University of Miami.