2014.....I so suck at keeping this journal updated....
Well, here it is 2014 and my last entry was in 2010.....so much for getting better at keeping this updated.
Still retired, but the good news is that after battling Social Security for almost 3 years, I am now classified as fully and permanently disabled. My doctors weren't any help as they still consider the "numbers" to be the definitive answer. IGF-1 levels are totally under control, thanks to the monthly injections, so you would think things would improve............not.
Looking at a hep replacement come April (Ortho back logged).....severely limited in mobility and overwhelming pain when I try to do anything. Merely shopping for groceries for the month leaves me in pain and confined to the heating pad and my chair and it takes a couple of days to recover. The Ortho says it's pretty clear that the Acro has produce so much bone growth on my femur ball that the ball is deformed (oval shaped like an egg) and extends out past the pelvic socket. This causes a constant grinding against the pelvic socket edge and the only remedy is to have a complete replacement done. The right hip has the same condition and although it's not symptomatic right now, he fully expects a replacement will eventually be needed in the future as well.
I think I've just about watched every movie on Netflixs. April can't get here soon enough.
Come March we'll do another MRI. I changed Endo's last November and the first thing she did was refer me to a local Neurologist as part of my new care team. He was surprised I hadn't had an MRI in 2 years and ordered one before I left there office. Pit looks good....no new tumor growth indicated, but something else popped into view that they thought was an aneurysm. After a few more test, they determined it wasn't an aneurysm but something called a cavernous malformation.....ganglion mass of pretty much useless blood vessels. So now we're monitoring that. The past couple of months the migraines have gotten worse and more frequent..........the doctor is not happy. March will tell if the malformation is growing. If it is that means brain surgery. Apparently the thing can bring on seizures and MS like symptoms. The Somatuline people are interested in it too.......since my old Endo switched me over to the somatulin depot monthly injection, I guess there is some concern if the shots had anything to do with it............
Sometimes I feel like a lab rat.........
Like Jimmy V (NC State Basketball coach and founder of the Jimmy V Cancer Research Charity........he lost his battle)......."Acro, you can take my mind, you can take my body..... but you can't take my determination or my spirit......"
Tomorrow is another day........
Still retired, but the good news is that after battling Social Security for almost 3 years, I am now classified as fully and permanently disabled. My doctors weren't any help as they still consider the "numbers" to be the definitive answer. IGF-1 levels are totally under control, thanks to the monthly injections, so you would think things would improve............not.
Looking at a hep replacement come April (Ortho back logged).....severely limited in mobility and overwhelming pain when I try to do anything. Merely shopping for groceries for the month leaves me in pain and confined to the heating pad and my chair and it takes a couple of days to recover. The Ortho says it's pretty clear that the Acro has produce so much bone growth on my femur ball that the ball is deformed (oval shaped like an egg) and extends out past the pelvic socket. This causes a constant grinding against the pelvic socket edge and the only remedy is to have a complete replacement done. The right hip has the same condition and although it's not symptomatic right now, he fully expects a replacement will eventually be needed in the future as well.
I think I've just about watched every movie on Netflixs. April can't get here soon enough.
Come March we'll do another MRI. I changed Endo's last November and the first thing she did was refer me to a local Neurologist as part of my new care team. He was surprised I hadn't had an MRI in 2 years and ordered one before I left there office. Pit looks good....no new tumor growth indicated, but something else popped into view that they thought was an aneurysm. After a few more test, they determined it wasn't an aneurysm but something called a cavernous malformation.....ganglion mass of pretty much useless blood vessels. So now we're monitoring that. The past couple of months the migraines have gotten worse and more frequent..........the doctor is not happy. March will tell if the malformation is growing. If it is that means brain surgery. Apparently the thing can bring on seizures and MS like symptoms. The Somatuline people are interested in it too.......since my old Endo switched me over to the somatulin depot monthly injection, I guess there is some concern if the shots had anything to do with it............
Sometimes I feel like a lab rat.........
Like Jimmy V (NC State Basketball coach and founder of the Jimmy V Cancer Research Charity........he lost his battle)......."Acro, you can take my mind, you can take my body..... but you can't take my determination or my spirit......"
Tomorrow is another day........
Replies
Thanks so much for your journal and comments. I diagnosed with a prolactinoma in 2013 at age 51 and it now seems that it is a co-secreting tumor. The acro part has been really ugly!! Joint pain, fatigue, brain fog etc. I keep going and have a tremendous resolve to continue on as close to normal as possible but I have a high stress high liability job and often don\'t know if I will make it through the day. My husband thinks I am too moody and has not been very understanding. I don\'t know where to direct him for reading materials. (or if he gives a crap about learning anything about this disease). You have been through a lot and still have a good attitude. Thanks again for your posts.