Today is the 34th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 34 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last several years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I didn’t look forward to telling my endo! I have had a couple more injections. I’ve been approved for a new gel injection but haven’t started that yet – that would be a three-time injection over 3 weeks.
I also developed an allergy to blackberries last October and had to take Prednisone – and I had to tell my endo that, too!
Today is the 32nd anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I didn’t look forward to telling my endo! I have had a couple more injections.
I also developed an allergy to blackberries in October and had to take Prednisone – and I had to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
Today is the 31st anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I’m not looking forward to telling my endo!
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Today is the 30th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 30 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two. Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.
However, this year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
Today is the 29th anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 29 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two. Even though I’m now 10 years NED (no evidence of disease) from cancer, I still can’t go back on the GH.
During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last year, I’ve developed ongoing knee issues. Because of my Cortef use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on another blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.
I’m thankful for Dr. Harvey Cushing and all the work he did. Otherwise, I might be the fat lady in Ringling Brothers now.
I was diagnosed with Cushing’s in 2003 . I was 34 years old, a single Mom of an 8 year old daughter and a Ceritified Nurse-Midwife. I had a pituitary microadenoma and it was removed via TSA nov, 2003. I had remission until 2006.
I knew I was getting sick again but my labs were inconclusive for many months. I had reduced my work hours and still too fatigued to work safely.
In August of 2006 I went to my primary care doctor and told her I was also having a great deal of trouble with my memory such as remembering medications that I gave all the time and even remembering how to look them up. I stopped working that day.
I had 1/2 pituitary removed in November 2006 with no remisssion. I researched options and got other opinions NIH, and Mass General and everyone agreed on radiation…the BIG dose ond day kind. Remission achieved a few months later.
I am still in remission currently, but not who I used to be. Still requiring naps a couple of times a day and to bed early . I have a lot of trouble concentrating, so I can’t drive more than 30 minutes or as my friend says, “my inner canine comes out” and I start staring out the window…kind of forgetting i’m driving. It’s funny but not really. what a wild ride this has been.
It is easy to feel like the only one with this disease, I’m glad you all are here to make it a friendlier place.
I suffered for eight long years with Cushings disease . I had surgery on August 1 , 2012 , I look like a different person , and act like a different person. I would love to share my journy . One that was an emotional roller coaster .
It was a long hellish journey .However I would not trade it for anything else in the world.
Although I suffered immensly, Cushings has made me who I am today. I have become strong from this disease. Although I suffered many symptoms, the emotional ones were by far the worst.
I would love to be interveiwed because I vowed when I was ill to help people when I got better.
I want to give people hope . So please choose me to be interveiwed .
I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.
I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.
I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.
However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.
It would have been easy for me to give up, but that is not the life I wanted!
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