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29 Years ~ Giving Thanks

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29-anniversary

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.

I took growth hormone for a while.

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.

To be continued in the following days at http://www.maryo.co/

Candy (Candybar11), Pituitary Bio

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pituitary-surgery

 

I was diagnosed with Cushing’s in 1997.

I had never heard of it before my doctor said he thought I might have Cushing’s. I went right to the library and read about the disease, they literally could have used a picture of me to display the physical characteristics.

After some testing I went to the NIH to verify I had a pituitary tumor. After it was confirmed I was scheduled for surgery. My surgery was successful to a point. They said a small part of my tumor could not be removed. My recovery went fairly well!

I began to lose weight and a lot of my symptoms went away. However it has been a long road. I still have some symptoms that never went away, I still sweat a lot, body aches and pains (now I have RA, fibromyalgia) memory not great, never lost all my weight either. My labs all say most of the time I am in normal range but I do not feel cured! But new doctor says numbers are fine you are fine.

I have been disabled since 1993, I had a lot of health issues that later were all related to Cushing’s. This disease in my opinion is never cured!

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Julie (Jules), Pituitary Bio

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pituitary-location
Hi,

I have been severely ill for over a decade. Bedridden mostly. Cushing’s was the first disease a doctor had suspected (then ruled out). After many tests and specialists, I came full circle.

Last October, a new endocrinologist saw my buffalo hump and decided to order saliva tests. They were crazy high. I was referred to a doctor at Mt. Sinai in New York for further testing.

On Feb 1st, I had an MRI of my pituitary and BAM! there was a tumor! On March 3, 2016 I had pit surgery. I’m on the other side now and the recovery is rough to say the least.

I work from home as a writer, have two wonderful kids and furkids, and a partner. We are all trying to get through this together.

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Malini (MK), Pituitary Bio

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pituitary-location

 

HI

I have Cushing’s disease cause by a pituitary adenoma and had unsuccesful pitiuitary surgery in AUg 2013.

Since then cortisol levels have not reduced sufficiently and the two options I have been given are further pituitary surgery to remove the gland or a bilateral adrenalectomy – but of which I don’t want.

I still haven’t had children and so don’t know the implications there as well as the long term impact on my life with such drastic measures.

Keen to see if anyone has been in the same situation and from a patient’s perspective what are the experiences. Doctors think they know the best solution but I have proven I am not a text book case

I did try Cabergoline for awhile and it worked but then stopped really having a effect and Pfizer has stopped production recently

Thoughts, advice is VERY welcome

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Janice B (NotSoCushie), Pituitary Bio

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The pituitary gland

The pituitary gland

 

Hi All: I had Cushing’s with a pituitary tumor. My endo always said I had too many symptoms. He said he could isolate the Cushing’s symptoms, but he was still left with a handful of other symptoms unrelated to Cushing’s, so he thought I had something else in addition to Cushing’s. But he said, one thing at a time.

I had the transf….up the nose surgery to remove the tumor on 3 April/2013. Successfully removed, however the surgeon nicked the pituitary gland and now I have adrenal insufficiency and take 5mg prednisone for life.

Then the something else turned out to be uterine cancer so I had an operation on 28 Nov/2013 for that. I am feeling my old self.

Last year was able to walk playing 9 holes of golf. This year goal is to walk 18 holes of golf. Today I consider myself Not So Cushie and am grateful for each day I have of good health.
I am writing my memoir: IT WAS THE GREATEST LOVE STORY EVER and have completed a one-person play of the same name based on the memoir. If anyone is interested in following my progress on these two things please see my website:janbarrett7.wordpress.com.

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