Join us as Mary O'Connor (MaryO) interviews Gracie again. Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years.

She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008. This is her first post-op interview.

Keywords: pituitary, cyclical, Cushing's, Dr. Ted Friedman, Dr. Hae-Dong Jho, surgery, pituitary, wean, cortisol, adrenal crisis

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview Stacey.  Stacey will be one year post-op at the time of the interview.  She will have been to her 1 year appointment and will give a full update of her recovery.

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview long time Cushing's patient Susan (SusanM).

Susan writes: Susan writes: As you may have read in my other post, I retired from a 28-year career at a major health insurance company (one of the big five) on March 31. 2008. I am happy with this achievement, however, much more proud of the actions I took to reach that achievement. Why so? For 27 of those 28 years, I had faced Cushings and we all know what difficulty that may bring.

In 2003, I had the pit surgery and became quite ill in 2004. It wasn't until November, of 2005 that I had the BLA which brought about some relief. During all of this, I worked full time consistently until 2004 when I had to take some time off of work. I was GH deficient and had the episode of congestive heart failure.

Once back at work, I applied for a work accommodation to work at home on Monday and Friday under the Americans with Disabilities Act. It was granted and I was provided with a full computer set up at home as well as the one at work. This made a great difference in my being able to work or not. Not driving the 26 miles each way to work as well as being at home continued my work.

Another thing I did was to work with my PCP to be accepted into the Physical Rehab at the local hospital. It provided medically-monitored exercise (up to 5 days a week) and my muscles recovered well during this time. I had difficulty with shortness of breath due to the weak muscles around my lungs and this was a positive step to correct that situation.

What else did I do to keep myself working during this timeframe? I worked incredibly hard on achieving a positive mental attitude! I meditated, performed self-hypnosis, and found a support system that worked for me. This foundation made the better days better and difficult days a bit less difficult.

Can someone with Cushings continue working? In my opinion, YES.

Interview with "Dr. Rob".

Listen as Robin Smith (staticnrg) interviews "Dr. Rob". Mary O'Connor (MaryO) cohosts

Dr Rob writes in his very popular blog: "I am a practicing primary care physician in the Southeastern US, caring for patients of all ages (Board Certified in both Internal Medicine and Pediatrics). This blog covers a wide variety of issues, including the following: What it is like to be a physician, dogs driving cars, what troubles are in our system, toddlers with flame-throwers, what would it take to fix that system, llamas, death and dying issues, mutants, and accordions. Maybe I need to write about mutant dying accordions with flame-throwers. Hmmm....I feel a post coming. Anyhow, I like variety. Life is always lived with both laughter and tears. If you are a regular reader of this blog, it is also filled with nausea and nightmares. Thanks for stopping by. -Dr. Rob"

Listen to this archived Interview with "Dr. Rob" October 2, 2008

Keywords: blog, Cushing's, diagnosis, doctors, hormones, insurance, specialist, tumor

Spreading the Word about Cushing's Listen as Mary O'Connor (MaryO) and Robin Smith (staticnrg) Discuss Spreading the Word about Cushing's

Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing's. They also discussed popular doctor blogs and other topics of interest to Cushing's Patients.

Listen to this archived chat with Robin and Mary on September 25, 2008
Listen to an archived chat with Robin and Mary on August 21, 2008
Listen to Robin's Archived Interview
Listen to MaryO's Archived Interview

Keywords: adenoma, adrenal, awareness, blog, cortisol, Cushing's, diagnosis, doctors, hormones, meds, pituitary, specialist, tumor

Interview with Joselle Listen as Mary O'Connor (MaryO) and Robin Smith (staticnrg) Interview Joselle

Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of a variety of disorders. However, I don't present as the "typical" Cushing's patient as I don't have the "moon face" or "buffalo hump". Fortunately, I have a primary doctor who didn't give up and ultimately orderd the cortisol suppression test. He then referred me to an endocrinologist. I had an MRI this past week. I have an appointment with a neurosurgeon in a week. It's a bittersweet diagnosis; I am a little scared about the surgery, but THRILLED that I am not crazy.....and maybe I'll actually be able to stop SHAVING my face !!!!!!"

Listen to this archived Interview with Joselle on September 11, 2008
Read Joselle's bio

Keywords: adenoma, awareness, cortisol, Cushing's, diagnosis, hormones, meds, MRI, neurosurgeon, pituitary, specialist, tumor, weight

Spreading the Word about Cushing's Listen as Mary O'Connor (MaryO) and Robin Smith (staticnrg) Discuss Spreading the Word about Cushing's

This chat depended on Joselle's surgery and recovery. Unfortunately, she wasn't able to make it so her interview will be rescheduled. Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing's. They also discussed popular doctor blogs and other topics of interest to Cushing's Patients.

Listen to this archived chat with Robin and Mary on August 21, 2008
Listen to Robin's Archived Interview
Listen to MaryO's Archived Interview

Keywords: adenoma, blog, breathing, cortisol, Cushing's, diagnosis, hormones, incidentaloma, meds, MRI, neurosurgeon, pituitary, specialist, thyroid, tumor, weight

Mar Listen as Mary O'Connor (MaryO) hosted an interview with Mar

Mar (mrsb91986)'s signature:
6/04 DVT Deep Vein Thrombosis -diagnosed with Antiphospholipid syndrome & Lupus Anticoagulant
6/05 Rhuemy told me I "most likelly" have Sjogren's Syndrome
7/06 All normal Endo tests, except for the Saliva which was lost but a low IGF-1 at 77
4/9/07 Tests in Seattle 2 relatively high Midnight serums 7.2 & 8.8 IGF-1 86 + 7 x 6 mm tumor
4/07 to present Still testing
9/07 Phone consult with Dr. L semi-high saliva's 4.7, 4.9 and 36.1 !!! He said to continue testing selectively and will go to Camp Cushie 11/12/07
11/07 Camp Cushie
11/13 12:15 a.m. ACTH 10 Cortisol 11.1, 12:30 a.m. ACTH 10 Cortisol 8.5, 4:00 a.m. ACTH 45 Cortisol 22.2, 8:00 a.m. ACTH 8 Cortisol 9.3, 12:00 p.m. ACTH 11 Cortisol 13.3, 4:00 p.m. ACTH 8 Cortisol 5.8, 8:00 p.m. ACTH 11 Cortisol 6.9
11/14 12:15 a.m. ACTH 15 Cortisol 12.5, 12:30 a.m. ACTH 10 Cortisol 8.3, 4:00 a.m. ACTH 26 Cortisol 17.2, 8:00 a.m. ACTH 15 Cortisol 16.5
Random IGF-1 70 Final result of stim test: 71 L (101-267) Two midnight (11:59 p.m.) saliva's 7.4 & 4.9

Read Mar's blog
Listen to Archived Interview from August 14, 2008

Keywords: ACTH, adenoma, adrenal, blood pressure, buffalo hump, Camp Cushie, concentration, dystonia, endocrinologist, fatigue, fibromyalgia, growth hormone, memory, MRI, pituitary adenoma, salivary, stretchmarks, tremors, UFC, Weight Watchers

Sheryl Listen as Mary O'Connor (MaryO) hosted an interview with Sheryl. Robin Smith (staticnrg) cohosted.

Sheryl (sherylr) talked about what it's been like living with Addison's after a BLA - for over 30 years.

Sheryl writes in part:

"I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974, 30 years ago.

"I'm sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.

"By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!

Read Sheryl's bio
Listen to Archived Interview from August 7, 2008

Keywords: Addison's, adenoma, adrenal, adrenal insufficiency, anger, anxiety attacks, bilateral adrenalectomy, BLA, blood pressure, calcium, cortef, cortisol, cortisone, Cushing's, endocrinologist, energy, ER, florinef, grief, hair, heat stroke, joint pain, kidney stone, meds, memory, moonface, MRI, pain, PCOS, pregnant, sodium, steroids, stress, surgery, symptoms, testing, tumor, UFC, urologist, weight

Gracie

Listen as Mary O'Connor (MaryO) hosted an interview with Gracie

Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years.

She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho just before this chat and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008.

Read Gracie's bio
Listen to Archived Interview from July 31, 2008

Keywords: adenoma, adrenal, anemic, anxiety attacks, arthritis, blood pressure, cortisol, Cushing's, cyclical hormones, diabetic, Dr. Ted Friedman, endocrinologist, energy, heart palpitations, hysterectomy, IPSS, iron, joint pain, meds, MRI, neuropathy, neurosurgeon, pituitary, stamina, stretchmarks, surgery, symptoms, tumor, UFC, weight

Listen as Mary O'Connor (MaryO) hosted an interview with Katie

Katie's short bio:

Symptoms started in 2002 at age 22, or before.

Jan. 2008 - 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI

Jan. 2008 - DX - hypothalamic amenorrhea

Mar. 2008 - DX - pituitary adenoma, hypogonadism - female

Katie will be an officer in the upcoming Cushing's Help Organization

Listen to Katie's Interview on July 24, 2008

Keywords: acne, acromegaly, adenoma, anxiety attacks, asthma, breathing, cortisol, Cushing's, hair, hormones, incidentaloma, meds, MRI, neurosurgeon, pituitary, pineal cyst, prolactinoma, Provera, thyroid, tumor, weight

Charlie (creativeogre) Listen as Charlie (creativeogre) is not yet diagnosed with Cushing's but has many symptoms. He writes, in part, "I understand that Cushing's Disease is a very difficult disease to diagnose. However, it seems as though we have had to guide doctors through this process over the past year. If I sound bitter and frustrated, it is because I am! I have not been able to work over the past year. Tasks that used to take me several hours to complete now take two days. I can no longer walk the dog.

Also at this interview were Robin (staticnrg), Charlie's wife Jen, and Katie (kvb927)

Keywords: adrenal, Cushing's, cyclical,diagnosis, headache, message boards, pituitary, sinus, sinus sampling, striae, surgery, symptoms, testing, weight

Interview with Alicia, a Cushing's Message Board member who is still testing.

Alicia writes "But my life has changed significantly since my last interview, and I could talk about losing my job and applying for Social Security at such a young age. And the issues about self-esteem tied to career, and risk of depression and isolation. Let me know...will be right after my disability medical screening, I should have lots to talk about!"

Read Alicia's bio.
Listen to Archived Interview February 7, 2008.

Keywords: bi-polar, cortisol, Cushing's, diagnosis, disability, depression, infections, isolation, manic, meds, message boards, pituitary, pneumonia, psychosis, psychotic, self-esteem, Social Security, surgery, testing, treatment

Donna Sellers

Donna Sellers, President, John's Foundation for Cushing's Awareness, mother of a Cushing's patient.

Donna's son may have been born with an adrenal tumor. His tumor was discovered and removed about 4 years ago. Since that time, he has been diagnosed bipolar and ADHD. Because of John's ongoing medical issues, Donna home-schools him in addition to running the foundation she started and named for John. Donna helps children and families worldwide who are dealing with Cushing's.

Keywords: adrenal tumor, aggression, blood pressure, cardiologist, cortisol, Cushing's, diabetic, diagnosis, endocrinologist, malpractice, medications, moonface, MRI, occupational therapy, PCP, pediatric, puberty, scan, speech therapy, stroke, surgery, symptoms, testing, treatment

"DrDori", Dori Middleman, M.D.

Dr. Dori is a Psychophamacologist and a Certified Gestalt Psychotherapist in private practice seeing adults, children, and families in the Philadelphia area.

She also co-leads workshops and training at the Pennsylvania Gestalt Center and is Founder and Director of the Center for a Healthy World, a volunteer-driven psychotherapy and training cooperative. Dori is a board-certified psychiatrist in private practice seeing children, adults and families.

Naturally, her other significant credential is having had Cushing's Disease herself! She has had both pituitary surgery and two gamma knife radiosurgeries. Her topic in the first guest chat was Psychiatric Issues with Cushing's Disease.

Dr. Middleman was recently interviewed on a Philadelphia-area public radio talkshow, Voices in the Family, and spoke about Cushing's Disease and how to make meaning out of illness and adversity. The show is available for listening online by going to Listen here »

Read Dr. Dori Middleman's article How To Have Fun With A Brain Tumor.
Read Psychiatric Issues of Cushing's Patients
Read "DrDori", Dr. Dori Middleman's First Guest Chat, Psychiatric Issues with Cushing's Disease, April 14, 2004.

Keywords: Psychophamacologist, Certified Gestalt Psychotherapist, Patient, pituitary, surgery, gamma knife, radiosurgeries, treatments, medication, therapy, Cushing's, tumor, adenoma, growth hormone, energy, antidepressant, post-traumatic, relationships, emotions, steroids, sleep disturbance, depression, fatigue, anxiety

Heather S (heather_suite)

Heather S had pituitary surgery on January 18, 2006 after years of medical problems, June 5, 2008.

From Heather's bio: "I lived my life with cerebral palsy growing up.. I had problems with weight, but nothing really horrible like now. When I gained it was little bits, but with how active I was, I could never lose anything. When I turned 21 I graduated from college and was looking for employment, which was also difficult because people thought that I was in pain when I walked.

Around the age of 22 I started to see fluid retaining in my legs.. it wasnt so bad at first.. also in college I broke my bones in my feet 3 times for no real reason. The fluid in my legs started getting worse and worse and the fluid was just leaking out of my legs. I went to the emergency room and had no insurance so I was kind of unlucky there. I went to a primary care doctor and was told that I had lymphedema and was given fluid pills. They didn't really work..."

Read Heather's bio at http://www.cushings-help.com/heather_s.htm

Keywords: pituitary tumor, surgery, adenoma, cortisol, cushing's, diagnosis, endocrinologist, medications, message boards, MRI, PCP, pituitary, steroids, symptoms, testing, treatment

teven (sowens) Listen as Robin Smith (staticnrg) hosted an interview with Steven (sowens)

Steve returned to talk about support networks and agencies. His topic was building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc). Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.

Read Steve's bio.
Read Steve's newspaper article.
Listen to Steve's Archived Interview from April 10, 2008
Listen to Steve's Archived Interview from May 29, 2008

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

Leslie

Leslie had pituitary tumors removed twice at the University Of Michigan.

After her second surgery she gave birth to her second baby.

She has had another recurrence and has had Gamma Knife Radiation April 3, 2008. She is not yet sure if the Gamma Knife worked yet.

Read Leslie's bio at http://www.cushings-help.com/leslie3.htm

Keywords: ACTH, baby, breathe, cortisol, c-sections, dermatologist, diagnosed, Dr Chandler, Dr William Malarky, Dr. David E. Schteingart, elbows, Endocrinologist, Gamma Knife Radiation, gland, halo, helmet, ICU, injections, ketoconozole, knuckles, moon face, MRI, neck, night sweat, nodule, Ohio State, Pituitary, pneumonia, pregnancy, pregnant, scar, stretch marks, tired, transphenoidal, tumour, University, University Of Michigan, urine, weak, weight

Jackie (samsmom) & Jordan)

Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.

Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.

Sam's doctor at NIH, Dr Stratakis has written several papers on Sam's case including one that was published in April, 2008. For more on PDE11A or iMad, please see A cAMP-specific phosphodiesterase (PDE8B) that is mutated in adrenal hyperplasia is expressed widely in human and mouse tissues: a novel PDE8B isoform in human adrenal cortex.

Jordan, Jackie's oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy. She participated in this chat as well.

Read Jackie's bio at http://www.cushings-help.com/jackie2.htm

Keywords: adrenal, atrophy, bilateral adrenalectomy, BLA, blood, bruising, CT scan, cyclical, Discovery Health TV, Diseases Doctors Miss, Dr. Constantin Stratakis, endocrinologist, epidural, gene, gene mutation, hereditary, hyperplasia, iMAD, laparoscopic, Liddle Test, Munchausen's, Mystery Diagnosis, NIH, Parkinson's, PDE11A, Stanford, stress, surgery, tired tumor, ufc, weight

Ferol (FerolV)

Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by.

Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.

Read Ferol's bio at http://www.cushings-help.com/ferolv.htm

Keywords: 24-hour ufc, ACTH, adenoma, adrenal insufficiency, artery, blood tests, cholesterol, chronic, clotting, cortef, cortisol, Cushing's, cyclic, diabetes, diagnosis, Discovery Health, dynamic MRI, emdometrial ablation, endocrinologist, ENT, free T-3, Free T-4, hair loss, hearing loss, hirsuitism, hydrocortisone, hypertension, hysterectomy, Loestrin24, Metformin, nausea, nerve, neurosurgeon, night sweats, NIH, OB-GYN, physical, pituitary, plaster cast, prolactin, scar tissue, scoliosis, sinus, skeletal soft tissue degeneration, steroids, surgery, symptoms, testing, tired, thyroid, treatment, urine, uturus, vaginal atrophy, wean, weight

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

Listen as Mary O'Connor (MaryO) hosted an 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.

Keywords: 24-hour ufc, acne, adenoma, adrenal crisis, bariatric surgeon, boils, broken bones, bruises, calcium, collapsing veins, cushing's, cyclical, diabetes, diagnosis, Dr McCutcheon, Dr. Hae-Dong Jho, Dr. Ted Friedman, fat pads, hump, hyperthyroid, kidney stones, lactation, medications, message boards, MRI, ovarian cyst, PCOS, PCP, pituitary, red face, straie, stress fractures, surgery, symptoms, testing, tired, treatment, weight

Alicia writes "Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisisâ€? plan and sent home for a little while.  Being diagnosed as a “psych patientâ€? would delay my diagnosis for years, most doctors just considered me "crazy."

Items covered include what happened to make Alicia realize she was sick; psychiatric diagnosis; symptoms did you have; how the "psychiatric symptoms" were actually symptoms of Cushing’s, too, and how that affects those who are trying to get help with this disease; and more.

Alicia's bio can be found at http://www.cushings-help.com/alicia2.htm

Thursday January 31 at 6:30PM eastern

Jayne Kerns is a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.

Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper.

Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.

One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, the credit is given to Jayne.

Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.

January 17, 2008:  Robin Smith (staticnrg) hosts an interview with Judy, the mother of two Cushing's patients, and her daughter, Jess, a high school student diagnosed with Cushing's.

Both children have been diagnosed with pituitary adenomas and are waiting for surgery. 

Items covered include the difficulty in getting a diagnosis; dealing with family and friends; attending school through the diagnostic process and more.

Robin Smith (staticnrg)  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.

Listen live to an archived interview from Thursday, January 3, 2008 with MaryO, Robin (staticnrg) hosting.

Robin started with: "Hello, I have with us today Mary O'Connor, founder of the cushings dash help dot com website.  Mary is a 20 plus year survivor of Cushing's Disease.  For those who do not know what Cushing's Disease is, you may want to peruse the Cushings-help website.  Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms.  Cushing's Syndrome is a similar disease caused by an adrenal or other tumor.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing's.  Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.  She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing's Awareness events.  She is married to Tom and has a grown son, Michael.

Mary, I know the listeners would love to hear your story.  What can you tell us about your symptoms , diagnosis, and treatment with Cushing's?"...

Questions included:

Why did you decide to start the cushings-help website?

What are some of the things that can be found on the site?

What are the message boards?

How many members are there on the boards?

How much work is involved in keeping up the site and the boards?

How are you doing now?  What has happened since your surgery for Cushing's?
 

As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.  Please stay tuned for more stories from these survivors!  For more information, visit the cushings-help website.