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MaryO: Giving Thanks for 30 Years

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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.

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 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.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

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 here at http://www.maryo.co/

 

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/

Cathy L (CathyL), Pituitary Bio

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I am 55 years old and my symptoms began long ago I believe.  I have had my tumor out and have not had any recurrance since 2009 when I had it out but unfortunately am still a little paranoid (to the extent that I will spend $100 on a saliva test once or twice a year) when I have any symptoms.

1998 out of the blue started having heart palpatations at night ( endocrinologist still insists that was not part of it but it stopped when my tumor was removed!!!(So far have yet to find an endocrinologist that I love…very narrow minded and refuse to admit how little they really know about Cushings).

2003 started Natural Progesterone cream due to fibrocystic breasts and low libido & just general breast cancer prevention.  No MD ever had a problem with that.

2005 – 1st saliva test just personal curiosity about hormone levels.

2006 started feeling lump in my throat when swallowing so went to ENT —found nothing out of the ordinary (with 20/20 hindsight suspect it was the supraclavicular swelling starting internally.

2007 upper GI just to be sure nothing in my throat per ENT referral–found nothing.

2007 starting to show supraclavicular fat pads 2 MDs & 2 surgeons seen for those & none of them picked up on the Cushings from that. Also had complained to my OBGYN @ the sensation of my uterus dropping out of my vagina — he saw no physical reason for this sensation but with cental obesity getting slowly worse (155 compared to my normal 135 lbs) i suspect there was downward pressure esp when walking & standing for long periods of time.

Finally in 2008 one of my MD patients suggested Cushings & BINGO everybody suddenly saw the light.  Abdominal CTs showed no adrenal problems MRI showed 5mm microadenoma (well circumscribed) .

My brother in law is a neuro-surgeon & in our area if you ever have anything weird going on you go to Duke but he said in this particular area you want UVA (a “Pituitary Center of Excellence”).  Dr. Ed Oldfield took out my tumor & so far so good.  I had to supplement cortisal at first but within 6 months I was off it & my body was making its own.  I feel that I was very lucky.  They say that the majority of MDs go thru their entire career without seeing a case of Cushings (OR knowing that’s what they are looking at). I would definately recommend not just letting any Joe-Blow neurosurgeon do your surgery – the more they have done the more likely the success.

I’m sorry this IS an update of my just submitted bio & I don’t know what my URL link is.   But I do feel that the 4 time cortisol saliva test was how mine was diagnosed because my morning cortisol which is all the MDs ever wanted to take was never off the charts IT WAS MY PM CORTISOL that gave it away.  Then total urinary cortisol measurement.  Sorry but I thought this was an important addition.  Yayy saliva testing!!!

Contact Cathy Leigh, DDS here.

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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