Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hello to all. It's been a while since I wrote anything on our site so I thought I'd update you as to some of the issues that I'm still having after the surgery.
I had the Pituitary Micro adenoma removed on February 8th. I had complications five days later and ended up in the hospital for an additional six days due to low sodium. May I just say, that was an experience.
I'm still taking hydrocortisone, but we've lowered the dose to 5mg each day as opposed to 10. My growth hormone is still 325 which his higher than desired but it has come down from the 700 to 800 range prior to surgery. My Doctors have been fantastic and I can recommend Dr. Troya of Florida Medical and Dr. Vale and Morrison of USF/Tampa General as outstanding caring doctors. The hospital staff at Tampa General is exceptional. If you find yourself in need of this type of surgery and you are in the Tampa, Florida area, seek these doctors out.
I'm still feeling fatigued and find myself having to rest throughout the day. The pain in my hands and feet has not decreased and walking, standing and griping is painful. The jaw pain from bone growth is very uncomfortable and when it "pops" it sends lightning bolts of pain up thorough my jaw and into my ear. I am scheduled to see a maxo-facial surgeon next week. I'm sure that others have shared these experiences and challenges.
Working is impossible with the changes that my body has gone through. Disability claims are pending, but as we all know, this could take a year. I would be interested to find others that have filed for disability with the same condition. If you can share with me your experiences and wisdom from going through the process, I would greatly appreciate your guidance.
Well that's it from Tampa today. Hopefully some of you that may be going through the diagnostic portion of the experience will find this information helpful. Please do not hesitate to contact me if you need any information.
Have a Great Day!
Warren
I had the Pituitary Micro adenoma removed on February 8th. I had complications five days later and ended up in the hospital for an additional six days due to low sodium. May I just say, that was an experience.
I'm still taking hydrocortisone, but we've lowered the dose to 5mg each day as opposed to 10. My growth hormone is still 325 which his higher than desired but it has come down from the 700 to 800 range prior to surgery. My Doctors have been fantastic and I can recommend Dr. Troya of Florida Medical and Dr. Vale and Morrison of USF/Tampa General as outstanding caring doctors. The hospital staff at Tampa General is exceptional. If you find yourself in need of this type of surgery and you are in the Tampa, Florida area, seek these doctors out.
I'm still feeling fatigued and find myself having to rest throughout the day. The pain in my hands and feet has not decreased and walking, standing and griping is painful. The jaw pain from bone growth is very uncomfortable and when it "pops" it sends lightning bolts of pain up thorough my jaw and into my ear. I am scheduled to see a maxo-facial surgeon next week. I'm sure that others have shared these experiences and challenges.
Working is impossible with the changes that my body has gone through. Disability claims are pending, but as we all know, this could take a year. I would be interested to find others that have filed for disability with the same condition. If you can share with me your experiences and wisdom from going through the process, I would greatly appreciate your guidance.
Well that's it from Tampa today. Hopefully some of you that may be going through the diagnostic portion of the experience will find this information helpful. Please do not hesitate to contact me if you need any information.
Have a Great Day!
Warren
Glad to here your surgery went well and your getting good results.
I have applied for SSI disability back in Sept. 2007 here in the US. I'm sure you've heard stories of the wait time. Well, I have been turned down twice when my diagnosis was Bi-polar II and sleep apnea, depression, anxiety disorder. When all along it was Acro. and Lyme. Then in June 2009 the diagnosis of Acromegaly was added due to a pituitary microadenoma. The first two times I was turned down was before the Acro diagnosis. As is the story for most of us here, it takes many many years to find this beast of a tumor. So my lawyer is just now faxing her brief for a reversal for a third decision. Could take 10 months to here back from Falls Chruch Virginia,(Appeals Council). So for me it will be over three years if we get approved. They say you can keep appealing over and over sooo, that's what I plan on doing. Good doctor records are important as that is what the judge reads, and if you can get a doctor to write a letter that you are unable to work full-time..... that helps. If able, you can work part-time up to 900. dollars a month. Financial help can be closely tied in with our over all well being. Maybe someday the disability system will be quicker to decide, and help the ones who really need it.
Best of health
Rhanna
Sorry that you have post-surgery troubles. How did you choose your surgeon?
Yarick
I'm sorry your going through this I wanted to share my experience in getting my disability approved.
I was miss diagnosed my medical records were so messed up to this day I don't know what I was approved on. I think I was approved based on my miss diagnosis it's self because one representative told me " people don't have the type of test, procedures and surgeries that you've had unless there's a reason." I couldn't argue that point because I went through a nightmare before I was properly diagnosed.
It's interesting that you live in FL I had a company called ACCESS that was located in FL help me with my disability claim. They were very helpful as they got my disability approved in three months from start to finish. However it was several years ago and now I have heard that it's taking longer to get approved. I'll try and located the phone number and address of ACCESS for you they didn't charge a fee. I'm trying recall what city ACCESS was located in I believe it was Tampa, FL.