Home

Lisa S, Pituitary Bio

July 18, 2026

MaryO Pituitary, Pituitary Surgery, Treatments Leave a comment

I was mid-diagnosed for about 5 years. Doctors that I had gone to for decades would prescribe me diet pills, told “brisk walking” (even though I walked about 12,000 steps every day at work), I was told to “put down the fork “… finally I was to meet a new doctor- the very first time I met her- she figured it out!

Then came blood tests and mri.

My neurosurgeon appointment was set for Nov. then I got a call that it would be October…. It was the end of September. Yay!! I was so happy someone figured it out!

First surgery didn’t get it all so it was done again. Veins were failing but I finally got to go home. 5 days later I was readmitted for my sodium levels being too low…. I told them my nose kept running- surgery #3- cerebral membrane leak- iv in my foot and a port installed…. and the spinal tap.

Again I got to go home. Was out of work for 11 mos. I was sooo tired. Went from 264 at original surgery to 109. That was in 15.

In the last 9 months I’ve been in the icu twice for adrenal crisis…. Nothing is getting better.

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

Pituitary Tumor, Helping Others Comes First

July 12, 2026

MaryO News Items, Pituitary, Pituitary Surgery , , , , , , , 1 Comment

He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.

“I have a tendency to do too much for other people,” Mrs Dines said.

“It’s just me. It’s in me, it’s what I do.”

The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.

“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.

“She inspires everybody she comes into contact with to be the very best they can be.”

Pituitary and pineal glands

Pituitary and pineal glands (Photo credit: Wikipedia)

Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.

The pituitary gland secretes hormones that influence the workings of many other glands.

She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.

Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.

After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.

She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.

Nominations in 10 Pride of Australia award categories close on Tuesday.

From http://www.geelongadvertiser.com.au/article/2013/07/12/369100_news.html

Voices from the Past: Kim H, Ectopic Bio

July 8, 2026

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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

Voices from the Past: Rebecca D (RebeccaD), Pituitary Bio

July 7, 2026

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , Leave a comment

Hi all!

I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.

I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.

I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.

In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.

I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 🙁 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 🙁

Voices from the Past: Lili, Pituitary Post-Op Update

July 5, 2026

MaryO Cancer, Pituitary, Pituitary Surgery, Thyroid, Treatments, Update , , , , , , , , , , , , , , , Leave a comment

 

hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

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

Anonymous Woman, Recurrent Cushing’s

July 2, 2026

MaryO News Items, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , , Leave a comment

A 45-year-old female developed clinical and biochemical recurrent Cushings’ Disease 2.5 years after transsphenoidal hypophysectomy for 2cm pituitary macroadenoma.

Past medical history included Type 2 Diabetes mellitus, asthma, hypertension, grade 3 obesity, dyslipidaemia, depression and sleep apnoea. MRI showed residual pituitary tissue with left sphenoid sinus extension.

MDT advised repeat transphenoidal surgery over radiotherapy due to presence of a clearly visible surgical target. Neurosurgery was initially delayed at patient request. She commenced metyrapone, titrated to cortisol levels but this was poorly tolerated. Whilst awaiting neurosurgery, she developed pituitary apoplexy with right sixth nerve palsy and superior quadrantanopia. MRI showed reduced tumor volume but she became progressively hypercortisolaemic. MDT discussion felt redo transphenoidal surgery no longer appropriate but unfortunately, the patient declined radiotherapy.

Over the next 5 years, her metabolic control deteriorated, managed with intensive insulin regime, GLP-1 agonist and SGLT2 inhibitor, anti-hypertensives, statin, Levothyroxine for central hypothyroidism, prophylactic Rivaroxaban for thromboembolic risk and intermittent Metyrapone.

Despite this she developed worsening alopecia, arthralgia, myopathy and NAFLD and became wheelchair dependent.

Options of pituitary radiotherapy, bilateral surgical adrenalectomy or ablation were discussed. Bilateral surgical adrenalectomy was accepted by the patient but delayed due to Covid-19 pandemic. Whilst awaiting adrenalectomy she developed worsening headaches and superior quadrantanopia. Repeat MRI showed increase size of pituitary adenoma with supraseller extension. She commenced Pasireotide after MDT discussion but attended A/E with worsening headache, visual field defect and ongoing cushingoid symptoms after 3 doses. Repeat MRI scan showed no significant tumour growth or apoplexy and MDT recommended Osilodrostat, which the patient is awaiting.

Conclusion: This challenging case highlights the alternative options of managing resistant hypercortisolaemia in an individualized approach and the difficulty explaining complex treatment options with patients.

Adapted from https://www.endocrine-abstracts.org/ea/0094/ea0094p245

Voices from the Past: Jestina (jestina902), Pituitary Bio

July 2, 2026

MaryO Diabetes, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , 2 Comments

Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Dr. Dori, Pituitary Bio

June 30, 2026

MaryO BlogTalkRadio, Golden Oldies, Interview, Pituitary, Pituitary Surgery, radiation, Treatments , , , , , , , , , , , , , , , , , Leave a comment

The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.  This Golden Oldie was last updated 06/19/2008.

~~~

December 28, 2002

HOW TO HAVE FUN WITH A BRAIN TUMOR

A Pituitary Party with a pituitary-shaped cake, complete with tumor of a different-colored icing, a pituitary hunt for the kids, a raffle to benefit the Wellness Community (a cancer support group), and a contest for the most creative object to be inserted inside my head in place of the removed pituitary tumor were ways in which I distracted myself from the terror of brain surgery. I hired a story-teller, who wrote pituitary stories. I bought the game, “Cranium”, to give as prizes for the winner of the replacement-object contest, and my caterer created pituitary-theme foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a brain decorating the table along with a scarecrow who displayed the sign, “If I only had a brain…”

My pituitary party invitation read:

As you may or may not know, I have been diagnosed with a pituitary adenoma, a small brain tumor, and am having surgery on April 3rd. I have decided that one thing you can do for me is help me have fun with my brain tumor. Traditionally, brain tumors have been viewed as undesirable, somewhat dreaded, and even potentially life-threatening. They’ve gotten a bum rap, in my opinion. I think they give life a purpose (survival with a few brains intact) and give their bearers something to talk about, but better yet, laugh about.

Dan Gottlieb, a Philadelphia Inquirer columnist, in his April Fool’s column on the importance of not taking oneself too seriously, gave me and my party a notable mention, resulting in all of Philadelphia knowing about my surgery and many expressions of support and concern.
Indeed, contemplating death and disease is not the way I most enjoy spending my time, although I did a fair amount of that too. But throughout my illness and recovery, I have attempted to make the most of the cards I have been dealt.

Other health-promoting strategies I have used included:

regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support;
contacting everyone I could think of for recommendations and information on doctors
finding and conversing with fellow patients on-line in the chatroom for people with my illness, Cushing’s Disease
using hypnosis, yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my medical treatment
re-entering and using psychotherapy to support me emotionally through the process of illness and the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and my pituitary and came to understand their function in my life: I had a hypomanic pituitary mimicking my own sometimes hyper-functioning mode of living.)
joking with people as much as possible about brain tumors to facilitate comfort of myself and people providing my care from hospital registration personnel to my brain surgeon
carrying with me at all times the small objects people offered to me as brain-tissue replacement
wearing a donut-like pendant covered by a symbol of a healer as a reminder of my brain with a hole in the middle healing

Unfortunately, my surgery was unsuccessful, and I faced a decision between a second surgery or radiation treatment. I did not find this funny. In fact, I was pretty demoralized and said so in an email to friends and colleagues, again inviting humor. One of my colleagues placed a request to the entire international mailing list of my Gestalt therapy colleagues on my behalf, saying she had “an ill friend in need of humor”. In came jokes from around the world – about fifty pages of them – which I read to my driver enroute to my gamma knife radiation treatment in another state. We laughed our way there and back!

Life is what it is. We get what we get. And we might as well enjoy it!

The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.

Listen Interview on a Philadelphia-area public radio talkshow, Voices in the Family, about Cushing’s Disease and how to make meaning out of illness and adversity.
Read Dr. Dori Middleman’s article HOW TO HAVE FUN WITH A BRAIN TUMOR.
Read Dr. Dori Middleman’s article PSYCHIATRIC ISSUES WITH CUSHING’S DISEASE.
Read “DrDori”, Dr. Dori Middleman’s First Guest Chat, April 14, 2004.

DrDori answered questions in an online Voice Chat, June 12, 2008, 7:30PM eastern. Archives aree available.

Listen to CushingsHelp on internet talk radio

| Adrenal Crisis! | Abbreviations | CushieWiki | Glossary | Forums | Donate | Interactive | Bios | Bios Listed by Date | Add Your Bio |

Amy (spunkybluecat), Pituitary Bio

June 29, 2026

MaryO Golden Oldies, Menopause, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie from July 11, 2011

~~~

Hello, my name is Amy.

I was diagnosed with Cushing’s last November and had surgery to remove the pituitary adenoma in March.

It took me FOREVER (over 3 y) to get a diagnosis. None of my doctor’s would really listen. I was SO frustrated but kept on pushing because I KNEW something wasn’t right. Pre- surgery I had excess hair (facial+), weight gain (abdominal), stertch marks, fatigue, very irregular menstrual cycle…..Now that I’ve had the tumor removed I still have problems.

I’m hoping that some of you will help me to answer those questions/problems. My facial hair has slowed down, I’ve lost over 65 pounds in 3 months, I’m going through menpause now (I’m 36yo), my hair is starting to fall out, I have NO energy/fatigued all the time, some days I wake up OK and others I wake up vomiting or very unsteady like I’m going to pass out if I’m on my feet for too long. I am very depressed.

My life has fallen apart. My marriage is over, I have had to move in with my mother, I am unemployed, and I can’t do the fun things that I should be able to do with my 8yo daughter. I have no friends and my family is not supportive at all. They say I just need to get off my *ss. I’m tired of people blaming depression, laziness, etc. I want my life back.

I need help and don’t know where to turn. I hope that I can learn what I need to do solve these problems and meet some people who can send some sunshine my way.

Meghan T, Pituitary Bio

June 29, 2026

MaryO Adrenal Surgery, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , 1 Comment

 

At age 21 (2015) I was diagnosed with Cushings Disease. I had a 12mm tumor on my pituitary.

After 18 months, I had a recurrence. 2 tumors were found. Had my second surgery at age 23 (2016).

That surgery failed so I had both of my adrenal glands removed six months later.

 

Megan added her Helpful Doctor, Sasan Mirfakhraee, to the Cushing’s MemberMap and to the Helpful Doctors List

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

Older Entries