vdub
01-20-2011, 03:04 PM
I must admint that I am amazed the disease I have is so rare. It is actually quite fascinating.
Below is an article I have not seen before, even though it was published in 1996. I love the part that says “there are only 12 cases id’ed at surgery as opposed to postmortem”. I guess I’m one of those 12. It’s probably better to be in the small, rare group of 12 than the larger postmortem group.
Sometimes I think I’m going to get to SLC and they’re going to say that I don’t even have Wegener’s. It could happen. I will probably always be searching the web hoping to find something suggesting it’s all a dream and can be fixed. But two things remain. First, I have Granulomatous Hypophysitis (physical evidence found by Mayo) and second, I’m panhypopit, i.e, no pituitary function at all. Those two things are absolutely indisputable and irreversible. Big bummer…
“There are only 12 cases in the literature of idiopathic granulomatous hypophysitis identified at surgery [2,5,6,8,10,12,13]--as opposed to postmortem diagnoses of this entity--and only three such cases reported with a preoperative magnetic resonance (MR) image.” [article (http://www.c3.hu/~mavideg/jns/7.html)]
Otherwise, still feeling pretty darned good. Had knee surgery last Friday (5 days ago) and no problems. Getting around just fine now without a cane and without pain pills. And, I have full rotation. So, no complaints....
Below is an article I have not seen before, even though it was published in 1996. I love the part that says “there are only 12 cases id’ed at surgery as opposed to postmortem”. I guess I’m one of those 12. It’s probably better to be in the small, rare group of 12 than the larger postmortem group.
Sometimes I think I’m going to get to SLC and they’re going to say that I don’t even have Wegener’s. It could happen. I will probably always be searching the web hoping to find something suggesting it’s all a dream and can be fixed. But two things remain. First, I have Granulomatous Hypophysitis (physical evidence found by Mayo) and second, I’m panhypopit, i.e, no pituitary function at all. Those two things are absolutely indisputable and irreversible. Big bummer…
“There are only 12 cases in the literature of idiopathic granulomatous hypophysitis identified at surgery [2,5,6,8,10,12,13]--as opposed to postmortem diagnoses of this entity--and only three such cases reported with a preoperative magnetic resonance (MR) image.” [article (http://www.c3.hu/~mavideg/jns/7.html)]
Otherwise, still feeling pretty darned good. Had knee surgery last Friday (5 days ago) and no problems. Getting around just fine now without a cane and without pain pills. And, I have full rotation. So, no complaints....