And It's About Time There Was Some Support For Cushing's!
Upcoming Guests:
Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist, May 15, 7:30.
Leslie, May 22, 7:30. Leslie had a pituitary tumor removed at the University Of Michigan. She has had a recurrence and has had Gamma Knife Radiation April 3, 2008.
Steve Owens (sowens) returns on May 29, 7:30. His topic will be building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc).
Heather S, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM
Lisa (Ikho), date to be determined.
Copacabana, date to be determined.
Judy's Sister, date to be determined.
Stacey, date to be determined.
LynziMarie, date to be determined.
Dr. Dori Middleman, Psychophamacologist, Certified Gestalt Psychotherapist and Cushing's Patient, date to be determined. Interviewed by MaryO
DrDori has had both pituitary surgery and two gamma knife radiosurgeries
Dr. William Ludlam, Neuroendocrinologist, date to be determined.
Alicia
Alicia writes:
"I first started feeling like something was wrong with me about my Junior year in college in 2000. I started gaining quite a bit of weight, 40lbs in 6 months, and I was tired a lot. I also was getting a lot of infections, strep throat, mono, etc.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 crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me "crazy."
Prior to this time I had weighed approximately 125lbs, was a competitive swimmer, played intramural softball and water-polo, worked as an athletic trainer, attended a private college, and was preparing to go to medical school. I was living life in the fast lane, and it all came to a screeching halt, life would never be the same again.
During my Senior year I decided that it was not a good time to pursue medical school with everything going on, so I applied to Graduate School back home in Arizona. I moved back to Phoenix near my parents and went to school at night pursuing my Masters in Social Work, while working with Autistic children in the school system during the day.
During this time I ballooned up to the heaviest I had ever been 180lbs, and took constant criticism from my family about what I was eating and how much I was exercising. I got so tired of hearing “do you really need a second helping” , even though I wasn't eating any more than I used to eat when I was an athlete, that I hardly went to family dinners any more. I was still getting sick a lot. I caught every cold and flu, especially since I worked in the schools. I also struggled during this time with severe psychiatric symptoms, probably the worst ever in my life.
I saw multiple doctors during this time, sometimes due to changing insurances, and sometimes because doctors didn’t believe me or wouldn’t order tests. I was told many times that “nothing was wrong” with me, even though I knew that there was something seriously wrong with my body.
I then finished my Masters and went to work for Phoenix Children’s Hospital as a medical Social Worker. I loved my job and worked there for about 4 years, but it was long hours, and I was on my feet all day, which I paid for every night! The job was stressful, and emotional, but it was still a great fit for me.
Over time I eventually decided that it was time for me to reapply to medical schools, because working in the Children’s Hospital had reminded me of my love of medicine. I was accepted into the class of 2009 at the University of Arizona College of Medicine. At that time I was my heaviest weight ever, 205lbs, I could hardly do any of the activities I used to do. Sports were definitely out of the question, walking down the street was even difficult. I started out doing ok at school. But fairly quickly it was evident that I was not performing at the level I was used to. I couldn’t quite figure out why. I just thought I couldn’t “cut it” in Medical School, I would later learn that my failing memory and cognititive skills were to blame.
I was seeing the Campus Health doctor quite frequently, for respiratory problems, for infections, and finally I brought up my list of symptoms. She sent me to a Rheumatologist, they did a complete work up for lupus and everything was negative, so my doctor pretty much dismissed my symptoms. During my second year of school I had meningitis, and pneumonia twice during the same year, and was suffering from debilitating migraines.
At this time I had done some research on my own and had some things I had learned from school, and I had kind of come to the conclusion for the first time, that I might have Cushing’s. I asked my doctor about this, and she told me that I “didn’t look Cushing’s.” At this time I weighed about 235lbs, had a red, round face, had lost a lot of my hair, and had a laundry list of other symptoms. After weeks of asking, she finally did order one 8:00am serum cortisol test. It came back normal, so she told me I didn’t have Cushing’s.
At that time, I made the very difficult decision to take a medical leave of absence from school. This gave me two years to return to school if I decided to, because they would hold a spot for me. However, finances got really tight paying for medical bills, because once the end of the term was over I no longer had insurance through the school. So I decided to go back to work.
I actually got a job with the College of Medicine on a grant project with the Family and Community Medicine program as a Social Worker for a clinic for adults with disabilities, which is where I am currently working. Since the job is with the College of Medicine I made an incredibly difficult decision to completely withdraw from medical school. Which means if I ever want to go back to medical school I have to start all over.
Well, I got new insurance with the new job, and since it is a state job it is really good insurance, so I got to try out a whole new set of doctors. The first one I went to came highly recommended, but one of the first things he asked me was not about my symptoms, but if he could call me “FAT.” Then after listening to my symptoms and to my thoughts about Cushing’s he then proceeded to tell me that all I really needed was a “good psychiatrist.” I went home and cried and needless to say, I did not go back to him.
Prior to that time I had found the Cushing’s Help-Support Boards, and I was steered towards making an appointment with Dr. F. I also found a new PCP at the clinic where I work that was amazing. I went to L.A. to meet Dr. F in the middle of January, and while I don’t have any of the test results back, I was so thankful for the opportunity. I felt so validated, and welcome there. Dr. F told me that he was almost 100% sure that I had Cushing’s just based on my report of my symptoms, my medical records, and my exam.
I am still waiting for my MRI and lab results back from my trip, but now I am actually looking forward to the future with hope instead of dread. Even though I now weigh 250lbs, can barely walk, am fatigued all of the time, my cognitive abilities have severely declined, and my vision is poor, at least I am still able to work, and my psychiatric symptoms are pretty much stable and under control.
I am hoping that by this time next year I will be on the path towards recovery!"
Read Alicia's bio.
Listen to Alicia's Archived Interview from January 7, 2008
Craven, Barbara, Ph.D., RD, LD
Barbara Craven, Ph.D., RD, LD is a licensed dietitian in Washington, DC. She currently has a practice treating patients with HIV/AIDS and teaching general nutrition. For many years she has had an interest in holistic nutrition and often uses natural therapies in her practice.
She received her Ph.D. in Food Science from Texas A&M University in 1980 and her RD in 1981. The first years of her practice, she taught at the University level, then went into private practice counseling weight loss and athletic nutrition. Several years ago she became interested in HIV nutrition and now dedicates her skills to helping the under served manage this devastating disease through diet and natural therapies. She is currently helping write an Evidenced Based Guide for Medical Nutrition Therapy in HIV/AIDS, is writing a cookbook for HIV/AIDS nutrition, is on the Ryon White Working Committee in Senator Ted Kennedy's Office, is Chair of the DC Area Nutrition Alliance and has been invited to speak on the latest developments in HIV nutrition at the National Ryon White Review Meeting this year in Washington, DC.
Barbara's link to us is that she has had Cushing's. Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed. In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed. Many of the symptoms you have experienced or are experiencing, she has also. Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.
Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease.
Read Dr. Barbara Craven's Guest Chat, October 27, 2004.
Crystal
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/
Listen to Crystal's Archived Interview from March 27, 2008
Friedman, Theodore C, M.D., Ph.D.
Theodore
C. Friedman, M.D., Ph.D. has opened a private practice, specializing
in treating patients with adrenal, pituitary, thyroid and fatigue
disorders. Dr. Friedman has privileges at Cedars-Sinai Medical
Center and Martin Luther King Medical Center. His practice
includes detecting and treating hormone imbalances, including hormone
replacement therapy. Dr. Friedman is also an expert in diagnosing
and treating pituitary disorders, including Cushings disease and
syndrome.
Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the NationaI Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.
Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Jackie
Jackie (samsmom) first started dealing with Cushing's in her family when her youngest child was born in 1999.
Jackie and Sam were featured on a Discovery Health episode called Mystery Diagnosis.
Later, the gene responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie's oldest daughter, has recently had her adrenals removed.
Jackie and Jordan will be the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series May 15, 7:30 The topic is Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Archives will be available after the chat
Read Jackie's bio
Jenn
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
Kennedy, Judy and Jessica
Judy (judycolby) and her daughter Jessica (Llama3234) both answered questions about what it was like to have two siblings with Cushing's issues
Both Jess and her brother Justin are preparing for pituitary surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.
Read Jess and Justin's Newspaper Article
Listen to Judy and Jess' Archived Interview from January 17, 2008
Kerns, Jayne
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 an article about Laura, the credit for Laura's Cushing's diagnosis is given to Jayne.
Q: What can you tell us about your symptoms, diagnosis, and treatment with Cushing's? And why so many MRIs?
Q: And your miracle baby - was it harder to be pregnant with Cushing's than it was with your first child?
Q: How are you doing now? What has happened since your last surgery for Cushing's?
Q: I know you will walk up to people in the street that you think have Cushing's and start talking to them about it. How do you get the courage to do this? Are people mostly glad you did or are some hostile?
Q: Besides dealing with all your Cushing's symptoms, surgeries and two young children, you also are a fierce Cushing's Advocate. I know you were instrumental in getting our first Cushing's Awareness Day passed. How in the world did you accomplish that?
Q: Besides your letter-writing, phone calls and locating patients in your local stores, you also set up health fairs for Cushing's Awareness. How does one get started doing that? What kinds of things do you do? I know others are interested in setting up tables at health fairs locally, too, and they might be able to use some tips from you.
Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.
Read about a patient Jayne talked to about Cushing's who later had surgery: After years, mystery ills diagnosed
Listen to Archived Interview January 31, 2008.
Ludlam, William, M.D.
Dr. William Ludlam: Dr Ludlam is a Neuroendocrinologist currently at Swedish Hospital in Seattle, Washington.
His Clinical Interests are: Acromegaly, Complex Prolactinomas, Cushing's Syndrome, Neuroendocrine Disorders, Pituitary Tumors
Dr. Ludlam attended Medical School at Albert Einstein College of Medicine, NY performed his residency at Oregon Health & Science University, OR and his fellowship at Oregon Health & Science University, OR
Read more about Dr. Ludlam.
Join Dr Ludlam, date TBA
Middleman, Dori, M.D.
"DrDori", Dori Middleman, M.D. 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 gamma knife. Her topic 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.
Read How To Have Fun With A Brain Tumor.
Join DrDori, date TBA
Monica
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.
Monica's husband Kevin, April 24. Talking about Cushing's from the spouse/caretaker point of view
He 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.
Read Monica's bio
Listen to Monica's Archived Interview from March 27, 2008
Listen to Kevin's Archived Interview from April 24, 2008
Nelson, Shauna
Shauna Nelson has dealt with a very rare, unusual form of Cushing's. Instead of a tumor, she has ACTH hyperplasia, meaning her ACTH cells are spread all over her pituitary.
Shauna had to make a big decision: either have her entire pituitary removed, have radiation or have both adrenal glands removed.
In 2001 Shauna had an unsuccesful pituitary surgery followed by a BLA in 2002. Following the BLA she lost all Cushing's symptoms and weight and went from 245 pounds to 110.
Shauna has suffered through several Adrenal insufficiencies and shared some of her experiences on our 911: Adrenal Crisis! pages. She is an active member of the message boards, helping everyone out, whenever possible. Shauna says:
"If anyone is considering a bilateral adrenalectomy, I would tell them that I'd do it again tomorrow. I have horrible days but I also have extremely wonderful days. And the horrible days are still not as bad as how I felt when I had Cushing's. In fact, I never knew how bad I felt with Cushing's until I was on this side of it. Life has never been better, and I appreciate good health now much more than I ever would have without having Cushing's.I'm glad I went through Cushing's, when it's all said and done. It made me a more compassionate, caring person. Some of us don't learn life's lessons until we're smacked upside the head with them. I've learned. I will never take for granted a day that God has given me. I will always value, respect, and love my family and friends. Without them and the support from this board, I wouldn't have made it though to be the new person I am now. Some of us are very lucky people in this life, and I credit my experience with Cushing's for shaping me into the person I am now."
Read Shauna's Bio
Read Shuana Nelson's First Guest Chat, June 9, 2004.
Nolan, Karen
Karen Nolan: 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
Listen to Karen's Part 2 Archived Interview from March 20, 2008
O'Connor, Mary
"MaryO", Mary O'Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing's symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing's Disease.
Due to her Cushing's experiences and the lack of websites for people with Cushing's, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.
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.
Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.
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.
Read Mary's bio.
Listen to MaryO's Archived Interview from January 3, 2008
Owens, Steve
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.
Listen to Steve's Archived Interview from April 10, 2008
Terry
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.
Listen to Terry's Archived Interview from April 17, 2008
Vandeveer, Ferol
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.
Listen to Ferol's Interview on May 8, 2008
Crystal (Vinesqueen)
Monica (Monicaroni)
Steven (sowens) is from Ohio
Terry (terry) 
Ferol (FerolV)