Listen as Monica (Monicaroni) talks about the challenges she's faced maintaining her music career as a professional violinist while in testing and treatment.

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.

Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!

From Monica's bio

Keywords: 24-hour ufc, Addison's, adenoma, adrenal crisis, anemia, antibiotics, B12, cholesterol, cortisol, cushing's, diagnosis, Family and Medical Leave Act, fatigue, fish oil, FMLA, gamma globulin, Gatlin Brothers, genetic, growth hormone, immune system, infection, insurance, IPSS, medications, pituitary, positive attitude, red face, sinus, steroids, strength, surgery, swelling, symptoms, testing, tired, treatment, triglicerides, Vitamin D, wheelchair, wean, weight

Listen as Kevin discusses his role as caretaker and spouse. At the time of this chat, Kevin was bringing Monica home from the hospital. She had just had another Adrenal Insufficiency episode.

Kevin is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry.

For the two years during Monica's diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica.

Monica and Kevin were married two years ago, just before Monica's pituitary surgery. Monica and Kevin spent their honeymoon in Portland at OHSU doing one of her several "camp cushie" trips.

Keywords: Addison's, adrenal insufficiency, antibiotics, appendix, attention, autoimmune, biology, BLA, blood, Camp Cushie, caretaker, circus, clinic, control, cortisol, Cushing's, cyclic, Dr. William Ludlam, ENT, grief, infection, internet, love, manic, mental hospital, misdiagnosis, moustache, MRI, ordeal, PICC line, pituitary, pneumonia, pre-diagnosis, radiation, research, scared, sinus, socialized medicine, spiritual, spouse, strength, stress, stress dose, surgery, testing, triage, urine, violin, weight, wheelchair

Terry (Terry), April 17, 2008.

Long time pituitary Cushing's survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing's Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital.

She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.

In Sept 2005 the surgeon removed infection from one area, make another area clear to allow for better drainage, checked her bone and found one area okay but took bone for culture from another area. Terry has had an infection requiring a post-op PICC line.

Keywords:  ACTH, antibiotics, auto immune, biopsy, BLA, blood pressure, bone, buffalo hump, chemotherapy, congestion, cortisol, Cushing's, Dr. Diana Maas, Dr. Hrayr Shahinian, Dr. Ted Friedman, endocrinologist, ENT, eyes, fatigue, Hashimotos, headache, hereditary, hospital, infection, kidneys, MRI, Muscle, muscles, narcotic, optic nerve, osteomyelitis, pain, partial empty sella, Percocet, PICC line, pituitary, RA, rheumatologist, rupture, saliva, sarcoidosis, sinus, Sjogren’s Syndrome, sphenoid, steroids, stretch marks, surgeon, survivor, synthroid, thyroid, tumor, vision, Wegner’s granuloma, weight

Interview with Steven Owens (sowens)

Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005.

Doctors thought he might have a pheo, now they're checking for ACC cancer.

Steven also has a newspaper article written about him.

Steve's daughter may also have Cushing's.

Read Steve's bio.
Read Steve's newspaper article.

Keywords: ACTH, adrenal, adrenal sampling, cancer, Cushing's, daughter, diurnal rhythm, Dr. Ian McCutcheon, Dr. Ted Friedman, Dr. William Ludlam, endocrine, endocrinologist, HyperBeta Adrenergic Syndrome, hyperplasia, IPSS, joint pain, MD Anderson, metastatic, MRI, pheo, pituitary, police, surgery, therapy, tumor, wean

Cushing's Awareness Day Special Chat

Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing's Awareness Day Special Chat

This chat had callers and some testimonials for the website and Mary O'Connor (MaryO).

Ideas were discussed for setting up non-profit status for this website


Keywords: ACTH, adrenal, awareness, cancer, carcinoid, computer, charity, cortisol, CT scan, dedication, director, doctors, Dr. Edward Laws, Dr. Harvey Cushing, Dr. Mary Lee Vance, endocrine, exploratory transphennoidal, fertility, flyers, fundraising, glands, Joanne Davis, library, lung, Mary O'Connor, MaryO, media, MRI, National Cushing's Awareness Day, National Institutes of Health, newsletters, newspaper, NIH, non-profit, nurses, Oklahoma, OctreoScan, patient, PayPal, petrossal sinus sampling, pictures, pituitary, PO box, post-op, pregnant, President George Bush, Reader's Digest, Senator James M. Inhofe, surgery, survivor, symptoms, tumor, TV commercial, website, XRays, yard sale

Jenn (StaceyJenn).

Jenn (StaceyJenn) has steroid-induced (Iatrogenic) Cushing's. She has taken steroids for secondary adrenal insufficiency. She has also been diagnosed with hypothyroidism, candidiasis, intestinal permeability and 22 latent food allergies.

Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing she and was transferred to his associate. The associate switched Jenn to medrol. Since then, Jenn has tried to wean off the steroids and has had further difficulties..

Read Jenn's bio
Listen to Jenn's Archived Interview from April 3, 2008

Keywords: 4-day rotation diet, accupuncture, adrenal, allergies, anti-fungal, asthma, blood pressure, calcium, candidiasis, chronic fatigue, corticosteroids, depression, dexamethosone, holistic, hydrocortisone, hypothyroidism, Iatrogenic, immune system, inhalers, intestinal permeability, joints, leaky gut, LEEP, Lyme Disease, medrol, mood swings, MSM, nasacort AQ, ovarian cyst, pain, predinsone, probiotic, pulmonary, SINGULAIR, specialist, steroids, stress, swelling, thin skin, thyroid, weight

Monica (Monicaroni) and Crystal (Vinesqueen) Listen as Monica (Monicaroni) and Crystal (Vinesqueen) talked about their pituitary surgeries and bilateral adrenalectomies (BLA)

Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it.

Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.

Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!

Monica is a professional violinist.

From Monica's bio

Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07

Her blog is available at http://vinesqueen.blogspot.com/

Keywords: 24-hour ufc, ACTH, adenoma, adrenal crisis, bilateral adrenalectomy, BLA, bruising, Camp Cushie, cortisol, cushing's, cyclical, Cyclical, diabetes, diagnosis, Dr. William Ludlam, encapsulated, fat pads, forceps, headache, hump, infection, Ketoconazole, lap-band, medications, message boards, MRI, nausea, Nelson's, NIH, OHSU, PCP, pituitary, radiologist, sinus, Solu-Medrol, steroids, surgery, symptoms, testing, tired, treatment, weight, wean, wheelchair

Karen Nolan (rooon55) Listen as Robin Smith (staticnrg) hosted an interview with Karen Nolan (rooon55), Part 2.

Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.

A doctor didn't advise Vermont's Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.

Read Karen's newspaper article Patients Fighting Cushings Disease.

Read Karen's bio.
Listen to Karen's Archived Interview from February 21, 2008

Keywords: Addison's, adrenal crisis, anemic, Auto immune Alopecia, bioidentical hormones, blood pressure, bone, bronchitis, cortisol, cycling Cushing's, diurnal variation, Dr. William Ludlam, endocrinologist, exercise, fatigue, free T3 and T3. pituitary, genetica, GH deficiency, growth hormone, gynecologist, hair loss, Hashimoto's, hormone, HRT, IGF-1, lab, medication, menopause, muscle, naturapath, PCP, professor, saliva, stress fracture, Thyroid disease, weight, Weight Watchers, wig

Cushing's Diagnosis and Symptoms, part 2.

Robin (Staticnrg) Listen as Robin Smith (staticnrg) and Mary O'Connor (MaryO) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment.

Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are.

Members of the message boards who called in to share were Leslie and Becky

Keywords: adenoma, adrenal, adrenalectomy, cushing's, cyclical, depression, diagnosis, DNA, Dr. Salvatori, dynamic MRI, ectopic, fat, growth hormone, hysterectomy, medications, memory, message boards, pituitary, salivary cortisol, serum, steroids, straie, surgery, symptoms, testing, testosterone, tired, treatment, weight

Mary O'Connor, Cushings-Help.com founder interview with Robin Smith (staticnrg).

Robin Smith (staticnrg) Listen as Mary O'Connor (MaryO) hosted part two the interview with Robin Smith (staticnrg).

Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com.

Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors for all sorts of things trying to get help. She kept getting sicker and sicker, and it got harder and harder to do anything.

Eventually, after having a bad experience with UVA, she went to see Dr. F. We went through some rounds of testing, had our ups and downs, but he stuck with me, and she got some sky high test results. Robin had to learn when to test because she was cyclical. Oddly enough, Dr. Jho, when she had surgery, insisted she was "classical" Cushing's. Robin didn't care what you call it, she just wanted to get well.

Topics discussed in the Archived Interview:

Q: How are you feeling tonight? I know you just had a GH test. Do you have the results of that yet?

Q: I know last time you told us about a bad experience with that bariatric surgeon. How were you treated by other doctors?

Q: What can you tell us about the early testing where no one put two and two together?

Q: How did you contact surgeons and what led you to pick one?

Q: Many people are oddly excited and happy when they find out that they have Cushing's because it means that there may be an end to their suffering finally. For you, instead of being happy about finally having validation, a diagnosis, and treatment (surgery) you weren't happy. Can you tell us a little about that? How did you work through that - or have you yet?

Q: How Robin shares her journey so others who are walking where she walked will recognize Cushing's and find help.

Keywords: 24-hour ufc, adenoma, adrenal crisis, bariatric surgeon, calcium, collapsing veins, cortisol, CPAP, cushing's, cyclical, diagnosis, IPSS, Dr. Laws, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, ENT, fat pads, gastroenterologist, hump, insulin resistence, MD Anderson, medications, message boards, MRI, PCP, pituitary, potassium, salivary, serum cortisol, sleep apnea, stress fractures, surgery, symptoms, testing, tired, treatment, weight