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.
My life changed dramatically in Sept 2013 when an MRI showed a tiny tumor that was causing galactorrhea. My PCP said I needed surgery but i saw an endo who said cabergoline is best.
I spent all of 2014 on 0.75 mg twice weekly -- feeling some days good and some days horrible. Love the emotional side effects of THAT drug! Reminding myself all year long how lucky I was to have treatment and the resources to afford it. Working 50 hours per week, welcoming a new grandson, exercising -- living life the best I could with brain fog and ever increasing joint pain, carpal tunnel syndrome and fatigue.
Little did i know that Thanksgiving week my life was once again going to change dramatically as I sat in a doctor's office waiting to meet my new endo. She came cruising in with a big smile introduced herself and said "I think you have a growth hormone secreting tumor"!! She had never met me and had only reviewed my records and some symptoms that I had complained of to my previous endo and boom! There you have it a whole new diagnosis with more ominous implications than "just a prolactinoma".
I sit here this evening after failing a glucose suppression test this week and meeting the neurosurgeon and feel a little lucky that a relative stranger made such an important diagnosis so early in the game. I am also a little hopeful that maybe I can feel a tad bit better after removal of the little monster in my head. (I named her Penelope)
My New Years resolution is to be ever so grateful for these small blessings. I've made is through the shock, anger and depression that comes with a diagnosis of having something in your skull that shouldn't be there and I can look back at the journey and realize that it has not been easy and there is still a lot more work to do.
Blessings to you my fellow acro brothers and sisters. Go out and make 2015 the best year it can be.
I spent all of 2014 on 0.75 mg twice weekly -- feeling some days good and some days horrible. Love the emotional side effects of THAT drug! Reminding myself all year long how lucky I was to have treatment and the resources to afford it. Working 50 hours per week, welcoming a new grandson, exercising -- living life the best I could with brain fog and ever increasing joint pain, carpal tunnel syndrome and fatigue.
Little did i know that Thanksgiving week my life was once again going to change dramatically as I sat in a doctor's office waiting to meet my new endo. She came cruising in with a big smile introduced herself and said "I think you have a growth hormone secreting tumor"!! She had never met me and had only reviewed my records and some symptoms that I had complained of to my previous endo and boom! There you have it a whole new diagnosis with more ominous implications than "just a prolactinoma".
I sit here this evening after failing a glucose suppression test this week and meeting the neurosurgeon and feel a little lucky that a relative stranger made such an important diagnosis so early in the game. I am also a little hopeful that maybe I can feel a tad bit better after removal of the little monster in my head. (I named her Penelope)
My New Years resolution is to be ever so grateful for these small blessings. I've made is through the shock, anger and depression that comes with a diagnosis of having something in your skull that shouldn't be there and I can look back at the journey and realize that it has not been easy and there is still a lot more work to do.
Blessings to you my fellow acro brothers and sisters. Go out and make 2015 the best year it can be.
When is your surgery? It will likely help.....maybe 100%.
The surgery was not bad at all. And, I felt incredibly well afterwards. Unfortunately, despite it's complete removal, the GH increased & I have been on medication since 5-6 months afterwards. It's the 'icing on the cake' analogy that someone here once made, I suppose.
Attitude & stress levels are factors, I believe. You have every reason to be hopeful.....
I am nervous and excited and hopeful for smooth course. I think my spirits are bolstered by waking up feeling totally normal this AM. Such a weird affliction.
Thanks for your posts and support.
And Lifespalette -- one of my favorite sayings is -- if I can get out of bed and motor to the bathroom under my own power, it's gonna be a great day!!
Everything life's palette says is true of me, too.
The 'swimming' feeling. Hmmm. I actually have had that the past few months. Prior to surgery, I had brain fog. But the feeling you describe has been more recent. I was thinking it was either the drug or menopause. It's not full blown vertigo (though one day in October I had to sit on the ground under the clothes line for a minute until 'landing.' But, I had the sensation as recently as last night.
The other thought on that (for me) is thyroid. THAT problem has come and gone many times through the years, and I think the somatuline aggravates it.
The CT of the sinuses is easy. I forgot the 'mask' that they give you the morning of surgery & had to have a neighbor bring it! Where is your surgery if you don't mind saying? Mine was at the University of Pennsylvania. Dr. Grady, the neurosurgeon, was educated/trained at UVa, which is a prominent center for this procedure. It made me feel confident, and he was great.
And, yes, I think Lifespalette calls it 'hitting the wall' at unexpected times during the day. Ditto. My Thursday morning trip to the supermarket has led me to a standing Thursday dinner of pizza & a salad!
The surgery will be at UTSW Medical Center in Dallas. My surgeon is Samuel Barnett MD the co-director of the Skull Base Surgery Program and he trained at UTSW and Univ of South Florida with Harry R. van Loveren MD.
You will likely feel better after surgery unless there is some unforseen 'glitch,' like not being able to be fully removed. The return of my symptoms took a few months. And, at this point, the somatuline bothers me as a drug more and more, but the acro symptoms are overlapping with thyroid and menopause.
The surgery will be good for you, though. I'd do it again in a minute despite the 'setbacks,' whose origins are anybody's guess.
I had terrible days yesterday and today. So any doubts about surgery were taken away. I need to feel better.
Hair and nail symptoms still come and go, and are back right now. Getting labs drawn tomorrow.
I have not, but am considering it. My thyroid endo is not totally opposed to it & thinks I might feel better.
Someone posted here in the past few months that they have used it with success. It was a good post, but I think the woman may have been a bit younger than we are.
It is unlikely that your pituitary dr will allow it pre-op, but I was wondering if you used or even pondered using it. We'll see what the new labs tell us. Stay tuned......