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Kathleen (ForegoneLegacy), Pituitary Bio

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golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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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/

Elisabeth (bethnaz), Pituitary Bio

1 Comment

golden-oldie

 

Originally posted Friday, November 21, 2008

Dear Cushie Companions,

“Without exaggeration, I’ve always been an incredibly energetic, exceptionally healthy woman with tremendous stamina and drive well into my 50’s. Since 2003, despite tenatious attention to diet and excersise, I’ve gained 45 lbs, now nearing 160 (I’m 61 years old and 5’5”). I know many large women with beautifully proportioned bodies. Mine, however, exactly replicates a Cushing’s patient. I know I’m seen as a pitiable “fat-so” who should learn to leave the table sooner and get off the couch more often. How ironic!! If I weren’t doing exactly that I’d easily weigh more than 200 by now. Equally disturbing are the other symptoms I’m experiencing, most of them attrituable to a pituitary adenoma. I’m utterly physically disabled when compared to my “abilities” of just two years ago!! More frightening is how quickly they’re accelerating! My symptoms aren’t caused by steroids, alcoholism or drugs.”

The above is a portion of a cover letter I sent to a neurosurgeon last week, along with copies of the films and results of my MRI (on a 3.0 Tesla, W/WO contrast) that showed a 5x5x6 mm adenoma on my right pituitary gland. I’ve been cortisol testing for nine months with mostly elevated, but not outrageous results. The neurosurgeon personally called me within 3 hours of receiving my package and agreed I do have an ACTH secreting tumor that needs to be surgically removed. He’s tentatively scheduled surgery for Nov 26th, the day before Thanksgiving!! Pinch me, I’m dreaming!!

It’s incredible this happened so quickly when so many of my Cushie comrads are still waiting for a diagnosis years into their disease. I must give credit for my success to sites like yours that provide education and incredible information, stress the importance of being your own advocate by taking matters into your own hands, being totally prepared for your doctor’s visits; speaking their language (in medical terms); immediately dumping those who aren’t effective, believing or productive; seeking out the most qualified and preparing your presentaion as if you were an actress auditioning for the lead in a movie!! It should include your “resume”, before-and after-photographs, all test results to date, a brief out line of symptoms and when they occured. I hope you’ll be as fortunate as I was!!! I promise to keep you posted. Thanks for your encouragement and prayers. I’ll be in recovery one week from today!! Happy Thanksgiving, everyone….

XXXOOO Bethnaz

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In Memory of Lenise Petersen ~ October 2, 2002

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in-memory

Lenise’s Original Bio

Lenise, 22 years old, single mother.

After the birth of my daughter I was breast feeding. I stopped, but did not stop producing milk. My doctor told me it was normal. So, I ignored it, and the anxiety, weight gain.

Then I went and saw a different doctor. He ran an MRI and found a pituitary tumor. That was in June. He sent me to my Endo. She diagnosed me with Cushing’s and sent me to a Neurosurgeon.

I’m now waiting to have surgery. I am tired all the time (I have a two year old). I’ve gotten so fat I can hardly move. My face is red all the time, acne too. I can’t sleep at night, and have a hard time staying awake during the day. I’m getting so tired of being tired it’s not even funny.

It’s almost been a year now, since I’ve known, and I really want something done. I want to feel normal again. I want to have the energy to play with my daughter. I feel bad for her. It takes all of my energy just to take care of her all day. I’ve had some depression with this, mainly because of the way I look. I used to look good. Not now. I have major issues with anxiety, I shake all the time. It’s like my nerves are shot to you know where. But, I’m so ready to have this surgery and hopefully get on with my life. I feel like my life is at a stand still waiting for this surgery. So, wish me luck. God Bless.

Lenise

Note: Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.

Official obituary.

Angelina S (Angel), Pituitary Cushing’s

2 Comments

pituitary-gland

I am 41 years old. I have a pituitary tumor, cushings, diabetes and lumbar spinal stenosis.

I went on the depo shot in 2006 due to heavy periods.

In 2009 I was having migraines and weight gain and ended up going to the hospital. They did a scan and said I needed to get to my doctor for further treatment. She only gave me pain medicine and I ended up on blood pressure and cholesterol medicine.

In 2010 I ended back up in the hospital they did another scan and asked if I was being treated for the pituitary tumor. I was in shock I knew nothing about it. They said it had showed up in the 2009 scan. The doctor said she knew nothing about it. I went to an endo he said I needed surgery and it was causing my eye problems pressing on my nerve.

I tried to go to a neurosurgeon but he wouldn’t see me unless I had $3,000 to $5,000 since I didn’t have insurance. So I dealt with the migraines, missed out on alot.

In 2013 now that I have insurance which not many doctors especially specialist take, they wanted me to go for more tests. In 2013 I started taking herbs, which was helping to reduce my prolactin so my doctor said to stay on the chasteberry and butterbur.

In October of 2013 I was diagnosed with cushings, after all the weight gain and trouble walking. December of 2013 they finally stopped playing around and put me on diabetic pills, which I should of been on sooner.

In 2014 I kept getting sick so much I lost my job working with disabled children. In May of 2014 my gynecologist took me off of the depo shot. I kept gaining weight and it was to the point that by September of 2014 I was having difficulty walking. Doctors didn’t say much about it just told me to lose weight.

In March of 2015 I read an article about cushings and the slowing of metabolism so I started taking raspberry ketones and in 2 months have now lost 24 pounds and can walk some. It is so nice because I was basically stuck in bed. I had another MRI in April and they compared it to the one in 2013 and the tumor hasn’t grown any.

The doctors haven’t given me any medicine for the tumor or the cushings, I am trying to control it all with herbs and so far it is working out. I had to fight to even get muscle relaxers for my back. I have lost all my friends through all of this and had to move back in with my parents because I lost my apartment. I was denied for SSD, but I am trying again. I want my life back and I am fighting for it.

 

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Sheara (sbailey), Pituitary Bio

1 Comment

golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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Survivor’s parents organize charity bike ride for Children’s Hospital neurosurgery

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La Cañada resident Taylor Winter was just 12 when she was diagnosed with Cushing’s disease, a condition caused by a tumor on the pituitary gland that affects everything from organ function and sleep to hormone levels and body growth.

Although she’d likely lived with the ailment for years, once it was discovered by an endocrinologist, Taylor’s family had to act fast to remove the tumor. That’s when they were referred to Children’s Hospital of Los Angeles’ neurosurgery division, according to mom Gaia Winter.

“We met with neurosurgeons to see what her options were, and eight days later she was in surgery,” Winter said, recalling the two surgeries it took to remove Taylor’s tumor.

Today, Taylor is an 18-year-old freshman studying theater arts at North Carolina’s High Point University. Her life may not be perfect (she still endures complications from her condition and surgeries) but she knows it’s better than it would have been had the tumor gone unchecked.

“I was not in a happy place before I got treatment, and I think it would still be that way today if I had gone undiagnosed,” she said in an email interview.

This Saturday at 11:30 a.m., Gaia and husband Wade Winter are hosting a charity bike ride at the indoor cycling studio SoulCycle in Pasadena to raise money for Children’s Hospital’s Neurosurgery Ambassadors group. The group comprises former brain surgery patients and their families who wish to “pay it forward” by raising funds for the neurosurgery division.

For a $75 donation, participants can reserve a bike and take a 45-minute stationary bike group ride, although cycling is not mandatory, Gaia Winter said. The money raised will help sponsor neurosurgery fellow Dr. Judith Wong, who will take her training to a town where skilled neurosurgeons are few.

Michael Sampiano, director of the hospital’s Ambassador groups, worked with the Winters and another family to create the program in 2012. So far, the neurosurgery division has received $14,000 from the efforts of that group. Both Taylor and twin sister Alissa are junior ambassadors in the program.

“The money this group raises covers the training and living expenses of our pediatric neurosurgery fellow (and) it gives our neurosurgery division the financial backing to continue its work,” Sampiano said, encouraging locals to join in Saturday’s ride. “It is indeed an investment in the community and for kids in the future who might be in need of this life-saving work.”

Taylor says she was lucky to have such a skilled facility so close to home and recalls her time spent at Children’s Hospital positively.

“Even though I was in pain or discomfort for the majority of my stays, the hospital staff and various volunteer groups… helped create such a fun and caring environment that I didn’t want to leave,” Taylor said.

The Winters, along with other patient families, hope to raise $100,000 this year for the neurosurgery division through the Ambassadors group. It’s the least they can do to give back, after being given so much, Gaia Winter says.

“They gave her the ability to be a normal kid,” she said. “We just feel passionate about giving back to them. The amount of work they do and the lives they touch is tremendous.”

 

What: Charity Ride for the Division of Neurosurgery

Where: SoulCycle, 140 S. Lake Ave., Pasadena.

When: Saturday, from 11:30 a.m. to 12: 30 p.m.

Admission: A bike reservation cost $75 but all donations will be accepted.

More info: Visit http://support.chla.org/pages/thewinterfamily or email NeuroAmb@gmail.com

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