Home

Susanna N (Susanna Nolt), Pituitary Bio

May 4, 2016

MaryO Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , 1 Comment

pituitary-gland

 

Hello! I am a 30 year old single lady diagnosed with Cushing’s in summer of 2015.
I am a Natural Health Consultant and through the grace of God and lots of research, I basically diagnosed myself. My primary care was familiar with Cushing’s and when she saw all the Labs I had ordered on myself, she sent me for an MRI which showed a 6mm pituitary tumor.

I was so excited that at last a REASON for all my symptoms was found! But I had no idea at that point how long and hard the journey would be.

My Cushing’s was fast progressing and I gained 1 lb a week for the last 12 weeks prior to surgery. Plus, I had gained 20 lbs prior to that over the last 2-3 years. Not too mention all the other symptoms of Cushing’s: depression, PCOS, fatigue, weak muscles, thinning skin, hair loss, mental confusion, headaches, etc.

I was referred to Johns Hopkins Hospital in Baltimore MD and I met one of the best pituitary surgeons in the nation, namely, Dr. Gallia. He has a 90% success rate for Cushing’s to date.

After the surgery on Nov 13, 2015, I went thru all the normal cortisol withdrawal symptoms….shaking and twitching, incredible pain and weakness everywhere, headaches, depression and irritability, etc I spent 6 weeks at my parents home after the week I spent in the hospital for recovery from the acute phase.

After moving back to my house, I went back to work part-time the first week in January 2016. Now this May 2016 will be the 6 month mark, and I am discouraged at how bad I still feel most of the time….easily stressed and depressed, pain everywhere (esp spine, shoulders, and neck), forgetfulness, and lots of headaches.

I am still on 7.5-10mg of Prednisone every morning. I was on 15mg when I left the hospital, but every time I lower it, I have another crash. I tried the Hydrocortisone, but that wasn’t strong enough for me. My Dr said that my cortisol levels were unusually high prior to surgery, so my recovery may be longer than average til my adrenals start producing cortisol.

So I’m trying to be patient…The good news is that I’ve lost 13 lbs and 4″ around the waist, so I need to be grateful for that when I feel depressed. I am anxious to hear from others who are on the “Cushing’s Journey”. It seems that in some ways I am worse now than I was a few months ago. I have days when I just feel like crying and the pain is intense!

Do others have migraine headaches several times a week? Are your menstrual cycles crazy and debilitating? Hopefully we can learn from and encourage each other!!

God bless each of you!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Julie (Jules), Pituitary Bio

April 15, 2016

MaryO Pituitary, Pituitary Surgery, Treatments , , , , 1 Comment

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.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Brain tumour survivor draws comfort | Toronto Star

June 16, 2015

MaryO Adrenal, Adrenal Surgery, News Items, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , 1 Comment

Erella Ganon has a brain tumour, and she wants everyone to know about it.

The 56-year-old woman has had brain surgery three times, had both of her adrenal glands removed and been through multiple bouts of radiation.

Ganon chronicles her health journey through a series of images in what she calls a “graphic autobiography.”

It’s a habit she got into as teenager. Every day she uses fountain pens to draw a picture of what she’s experiencing.

For the past decade those pictures have illustrated her battle with Cushing’s disease, a rare disorder that makes her pituitary gland release too much ATCH (adrenocorticotrophic hormone), stimulating the production of cortisol, a stress hormone, creating tumours.

Ganon shares her images on an online blog that in turn offers inspiration and comfort to others struggling with illness.

The hand-drawn pictures present an open and often humorous look at life with disease. The images are instantly relatable and depict everything from hair loss to hospital food.

“Everybody who’s touched by catastrophic disease… has a feeling of powerlessness, but the artwork and putting it out there is the opposite of that,” said Ganon.

via Brain tumour survivor draws comfort | Toronto Star.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Angelina S (Angel), Pituitary Cushing’s

May 21, 2015

MaryO Diabetes, Other Diagnosis, Pituitary , , , , , , , , , , , , , , 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.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Newer Entries