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.
Well sometimes you just have to stir things up..........early this month I finally made the jump to switch my Endo. While my old one was a nice guy and a good Doctor, I got the feeling that we were stuck in a rut. Blood work and examine every 6 months........IGF-1 levels look good, do something about that Cholesterol (translation: watch your diet), still borderline Type II (translation: watch your diet)........see you in 6 months......repeat, repeat, and repeat.
My new Endo was shocked that I didn't have a full team treating and monitoring my condition and that it had been at least 3 years since my last MRI to check the pituitary. First step was an appointment with my new Neurologist surgeon ........where he immediately ordered an MRI to compare to my old ones that he had requested.
In December, I already have appointments with my Cardiologist, Urologist and a Vision Specialist..............
Good news: Pituitary looks good. No indication of any new growth of the tumor. Apparently, still enough residual cells to mandate continued injections. Pretty much the same old song.
Bad News: There on the MRI scan, about halfway between the pituitary and the back of my head .... was a very obvious white crescent shaped aneurysm........about 3/4" in length.........
Merry friggin Christmas...................xoxo , the Beastie........
First stop: waiting on word for Angiogram test date........than the determination if this can be treated vascularlly or something that will require surgery..............
Moral of the story: We have to be and are the best advocates for our care, treatment and quality of life. We have to listen to our bodies' signals and messages.........nobody is or can be better in-tuned to our bodies. The Doctors are governed by numbers. film and test when we come in for an appointment..........we, on the other hand, deal with it on a daily basis.
My new Endo was shocked that I didn't have a full team treating and monitoring my condition and that it had been at least 3 years since my last MRI to check the pituitary. First step was an appointment with my new Neurologist surgeon ........where he immediately ordered an MRI to compare to my old ones that he had requested.
In December, I already have appointments with my Cardiologist, Urologist and a Vision Specialist..............
Good news: Pituitary looks good. No indication of any new growth of the tumor. Apparently, still enough residual cells to mandate continued injections. Pretty much the same old song.
Bad News: There on the MRI scan, about halfway between the pituitary and the back of my head .... was a very obvious white crescent shaped aneurysm........about 3/4" in length.........
Merry friggin Christmas...................xoxo , the Beastie........
First stop: waiting on word for Angiogram test date........than the determination if this can be treated vascularlly or something that will require surgery..............
Moral of the story: We have to be and are the best advocates for our care, treatment and quality of life. We have to listen to our bodies' signals and messages.........nobody is or can be better in-tuned to our bodies. The Doctors are governed by numbers. film and test when we come in for an appointment..........we, on the other hand, deal with it on a daily basis.
Been reading a lot this morning already about "bleeding" and symptomatic and have to wonder if my decreasing coordination and the (2) TIA's in 2007 and 2008 are related.
For now at least I'm more at ease knowing that my head isn't going to explode on me.........but, as far as Angiograms are concerned...... I would rather not go through that again. The next time that Doctor says " you shouldn't feel much more than a little pressure in your groin area when we nick the artery.....", I'm gonna call him out.
Guess for now that I'll just have to wait for the follow up to see where we go from here.................
Take care and good luck with further tests!
Life goes on........the battle continues.
Celebrating the good news and wishing you more of it, as well as continued strength to fight the good fight.