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Stephanie M (Stephanie), Pituitary Bio

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I found out I had a tumor on my pituitary gland in Nov 15 quite by accident, as you do!

I’d had an ovarian cyst and endometriosis taken out quite easily and then a horrific back surgery to take out a cyst on my lumbar spine. I was ( and am still) dealing with chronic severe nerve pain and numbness in my left leg and foot.

I’d been told I needed to watch what I eat and exercise even though I did both and still I gained 30 lbs. An ENT found the tumor on an MRI after I had a lymph node practically explode on my neck! Ugh.

We were getting ready to relocate to AK from TN and still hadn’t been diagnosed. I had to travel to Seattle from Fairbanks for all my appts!

Long story short, I had a macroadenoma on my pituitary gland. By the time I had my first surgery, I could barely think rationally anymore, I was in terrible pain, I had very little muscle strength left, and I’d gained a total of 70 lbs. I can’t remember much of that time. I had negligent pms and great but distant specialists.

I had to go back for a second surgery then have radiosurgery w/ a gammaknife in the Spring of 2017. I took mifepristone for too long because my Seattle endocrinologist moved to AZ. It worked well then it was making me sick. I couldn’t eat and lost 50 lbs. I changed all my doctors and am now making the uphill climb. I’ve gained 10 lbs back and my progress with muscle strength is so sloooow. I’m thinking much clearer now.

Because of this experience, I have learned to be an advocate for myself in the medical field, I am a cynic about the human race still but appreciate people and the world a lot more. I have learned to be patient because my life has slowed down.

I am the only Cushing’s patient in Fairbanks I think. It’s hard because I’m in remission but it’s just stage 3 after diagnosing then curing. Now it’s recuperating after being ravaged by the disease. I have no idea how blogs work. I don’t know where to start w/ regards to mining all the info. Thanks for having this site. I was going to make my own if I hadn’t found it!

Stephanie’s doctor

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Stephanie (Stephanie), Pituitary Bio

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The pituitary gland

3 years ago, 2014, I was 43 and very active, running, doing HIIT workouts, volunteering, making and doing stuff, traveling like a maniac.

Then I started getting cysts that were benign but required surgery. One was endometriosis and ovarian, the second, lumbar. Which resulted in my having chronic, severe numbness and nerve pain in my left leg. I attributed the severe weight gain to not exercising.

Then I went to the emergency room for a abscessed cyst in my neck. An ENT did a follow up MRI and found a cyst on the pituitary gland late 2015, but I had to move to Fairbanks. early 2016.

Finally, I have a team of an Endocrinologist specializing in Cushing’s and a Neurosurgeon at Swedish in Seattle. I have to travel but it’s worth it because I’m being treated for something.

I had the first transphenoidal surgery in Aug 2016 that removed the bulk of the macroadema, but there was still elevated cortisol and they found some cyst left. Just had the second surgery January 2017 and will be going to post-op appointment soon.

I still have symptoms of Cushing’s Disease, don’t know yet if I actually have elevated cortisol, but I left the hospital with no change in cortisol from admittance to discharge. I looked at the scale today and despite watching my eating have gained weight- I have gained 60 lbs in 3 years! I still have the severe, chronic nerve pain so am on meds, go to p/t and a pain management specialist.

Have had hypothyroidism and take steroids. I go through cycles of good days but mostly bad with sleeping and bathroom problems and unhappy thinking.

I rarely leave the house anymore. I look and feel ugly and disabled – I just got a handicapped placard. I want to volunteer, travel, go outside but then when I try, I get sick and can’t. So I’m trying to find ways to be active at home or on my own time schedule. I do fiber arts at home but for my own sanity- it’s not good enough to sell but I have enough stuff to sell! I’m also an introvert with a social phobia, I don’t have any extended family, and I’m new to this area so have not made any friends! So this is the great challenge of my life, where all my roads have led me to, to which my strength and knowledge must apply and conquer.

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Lucienne S, Pituitary Bio

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Lou – age 33 – British

Self diagnosed after 6 years of cushings & UK doctors who dismissed me as depressed & unluckily unhealthy.

pituitary-location12mm macroadenoma & pituitary gland completely removed in London National Neuro Hospital in Jan 2012. Still going through rehabilitation from cushings & surgery damage.

Finally on complete hormone replacement 20 months later (6/7 drugs) had to fight for some (some legitimate & some ludicrous reasons), still facing uninformed doctors & so called ‘specialists’ every week, who misdiagnose conditions or make wrong assumptions, so am now well studied in general medicine & endocrinology myself, particularly with the post illness complications & resulting conditions from cushings damage & pituitary loss. This helps keep an eye on things albeit tiring studying while sick.

Happy to get involved when asked, or answer any personal questions at lousencier@me.com

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