From Prevention Magazine…
Why Did I Stop Sleeping?
July 15, 2021
Other Diagnosis, Pituitary, Thyroid ACTH, bruises, dexamethasone suppression test, Dr. Minghao Liu, hair loss, hyperthyroidism, melatonis, MRI, neurosurgeon, pituitary, prediabetes, sleep, steroids, weight 1 Comment
In Memory of Kalyn Allen, June 28, 2017
June 28, 2021
In Memory, Pituitary, Pituitary Surgery, Treatments acne, blood clot, Blood pressure, cortisol, Cushing's disease, fatigue, hair, In Memory, pain, pituitary, Stretch marks, Weight gain Leave a comment
We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook:
This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.
Yesterday he posted:
Kalyn is in critical condition in the CV-ICU at St. John’s in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.
Kalyn’s story from https://www.youcaring.com/kalynallen-786017:
My name is Kalyn I am 41 years old. I am married and have three children. In Nov ‘16 I was diagnosed with Cushing’s Disease.
My journey began in June ‘16 when I attended a health screening provided by my employer. It was discovered that my blood pressure was dangerously high and I was sent to my physician. I was prescribed blood pressure medicine. A couple of weeks later I joined a wellness program to turn around my exercise and eating habits in hopes that it would help me lose weight and lower my blood pressure.
Over the next few months I was seen by my physician numerous times. I was beginning to have strange symptoms. I was easily bruising. Dark purple stretch marks started to appear out of nowhere. I had hair loss on my head but excessive hair growth on my face. My ankles and hands swelled along with a loss of muscle mass in my legs, horrible acne and a shortness of breath. While my physician tried several different medications they were not alleviating my symptoms. At this point I was having trouble getting in and out of my car and the shower. I also started seeing a therapist because the excess hormones in my system were causing uncontrollable mood swings. During this time I was exercising and following the wellness program losing 52 pounds from June until the end of Oct. But there were still issues controlling my blood pressure. It was at this point that my physician referred me to an endocrinologist.
The endocrinologist ordered a multitude of tests to measure my cortisol levels as Cushing’s disease was suspected. To be thorough an MRI was ordered of my brain to see if they could find a tumor on my pituitary gland. This was done at the end of Dec. It was discovered that I had a 3.7 millimeter tumor on my pituitary gland. From there I was referred to a brain surgeon.
My condition continues to deteriorate as I am experiencing extreme fatigue, intense muscle and joint pain while having excruciating headaches almost everyday. Among other agonizing symptoms that complicate the situation.
I now have surgery scheduled for the first week of May ’17 to remove the tumor. I will be in the hospital for 3-7 days and my recovery time will be from 6-8 weeks. I will have to travel hours away to have the surgery and remain there during my stay in the hospital. My parents will be by my side during surgery. But unfortunately my children and husband will not be able to accompany me due to the expense and not being able to leave our farm animals unattended for that long.
During this time away from work I will be on short term disability. My employers short term disability plan only covers 80% of my wages during this time. This will result in my family undergoing a financial hardship as my husband and parents undertake the task of my care during recovery and attempting to cover the missing 20% plus extra expenses such as medicines and doctors appointments.
I am asking for your compassion and support to help my family and I through these trying times. This journey has been a roller coaster of emotions and physical pain for myself and my family. My Mother has been such a rock for me listening to me complain and cry. My Father has also been there for me always willing to talk and making me smile and laugh even if I didn’t feel like it. My Husband has taken over so much responsibility that was mine. And my children are always willing to help me out with the little things. It is frustrating going from being very active and able to do so many things I love to now only being able to go into the office to work several days a week and the rest of the week working from home doing little else because of the pain and the fatigue. I just want to get back to normal.
Update 5/3/17:
Kalyn’s surgery was very successful and the doctors said they where able to see and remove the tumor only taking 40% of her pituitary gland. She is in recovery now and will be in the hospital for the remainder of the week. She would like to thank everyone for their continuing support over the next few months while she recovers.
Update 5/4/17:
We got some bad news today. After removing the tumor along with 40% of Kalyn’s pituitary gland, her cortisol levels are still high, meaning there is still something else causing her cushings. So we are back to square one. Now we wait to see what the surgeons and the endocrinologists came up with. She is still in a lot of pain and exhausted because it is hard to sleep with all the packing in her sinuses. With this news she will probably have to stay in the hospital longer and may have to have another surgery to remove the rest of her pituitary if they can’t find anything else. The Dr’s may order a PET/CT scan to look other places for tumors but that may take up to 48 hours to get access to the machine.
Update 5/8/17:
Kalyn went in for a PET/CT scan this morning at 6:45 to look for any other tumors or cancer that could be causing the Cushing’s disease. Baring the scan finding anything, later this week the surgical team will go back in and remove the remainder of her pituitary gland. This will result in her being required to be on several medications the rest of her life. While removing the pituitary should solve the Cushing’s it opens the door to increased risk of complications and additional heath problems in the future. She will have to stay in the hospital much longer then anticipated and may have a longer recovery time. The children and husband where able go to OKC on Saturday to visited with her in ICU. This was the first time we have been able to see here in a week besides video chats. They spent several hours together and everyone enjoyed the short time with mom. Thank you Bob Eden for driving the family to OKC and for the pizza lunch everyone enjoyed. Kalyn remains optimistic and in high spirits considering the circumstances. She enjoys and appreciates all the kind words and support she has received though this difficult ordeal. The results of the PET/CT scan should come back quickly and we hope to not have to deliver any more bad news. This ordeal has been very stressful for her and the family and we are hoping for a favorable resolution soon. Kalyn and the family thank you for your continuing support and donations.
Update 6/26/17:
Kalyn is in critical condition in the CV-ICU at (hospital ommited) in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go.Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and husband are having to make daily trips into Tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.
She thought her weight gain was due to giving birth. She learned it was a tumor
May 28, 2021
Pituitary acne, ACTH, adrenal gland, Adrenocorticotropic hormone, Blood pressure, cortisol, Dr. Hamid Borghei-Razavi, hormones, Inferior petrosal sinus sampling, IPSS, MRI, pituitary, pregnancy, UFC, weight Leave a comment
Dr. Irmanie Hemphill, who first thought her weight gain was due to having a baby. Doctors at Cleveland Clinic Florida in Weston diagnosed her with a tumor in the pituitary gland in her brain.
In the summer of 2019, Irmanie Hemphill gained a lot of weight, developed acne and had high blood pressure. She attributed it to her body adjusting from giving birth just six weeks prior.
“I was thinking maybe it was just hormonal changes from having a baby,” said Hemphill, 38, of Pembroke Pines.
But when Hemphill, a family medicine physician, saw that her nails were turning dark and she gained five pounds within a week, she knew it was something more serious.
Blood tests ordered by her physician came back normal, with the exception of high levels of cortisol detected via a urine cortisol test, which she requested after researching her symptoms online.
The next step was to find out where the excess cortisol was coming from: either her kidneys or her adrenal glands, which produce hormones in response to signals from the pituitary gland in the brain.
The first MRI of her brain did not detect anything abnormal, so her endocrinologist attributed her symptoms to her body adjusting post-pregnancy.
Hemphill sought a second opinion at Cleveland Clinic Weston, where more MRIs of her brain, combined with an Inferior Petrosal Sinus Sampling (IPSS) procedure, detected she had a tumor on her pituitary gland. That led her to be diagnosed with Cushing’s Disease — caused by excess cortisol.
TWO TYPES OF PITUITARY TUMORS
There are two types of pituitary tumors: those that produce active hormones, like the one Hemphill had, and those that do not, which grow in size over time and do not manifest symptoms right away.
Hemphill’s tumor was producing adrenocorticotropic hormone (ACTH), which causes the adrenal gland to produce more cortisol.
Many people with Cushing’s Disease experience high blood pressure and high blood sugar, muscle fatigue, easy bruising and brain fog. If left untreated, the condition can lead to pulmonary embolisms, diabetes, osteoporosis, strokes and heart attacks.
“It was a little bit of relief but also sadness,” said Hemphill, of finding out her diagnosis. “I was very happy that I got a diagnosis but now it’s like, what’s the next step?”
LESS INVASIVE WAY TO REMOVE A PITUITARY TUMOR
Hospitals in South Florida are at the forefront in developing new research, techniques and technologies for pituitary tumors.
The tiny bean-shaped pituitary gland is located at the base of the brain and controls many of the body’s hormonal and metabolic functions.
Last June, neurosurgeon Dr. Hamid Borghei-Razavi of Cleveland Clinic Weston removed Hemphill’s pituitary tumor through her nose. This type of procedure allows surgeons to remove the tumor without damaging the brain.
“It’s a less-invasive approach compared to 20 years ago, when pituitary tumors were removed through the cranium,” he said. “Now, with new technologies, more than 95% of pituitary tumors can be removed through the nose.”
The procedure takes just a few hours to complete, based on the size and location of the tumor. Patients usually stay at the hospital for one to two days afterward for observation.
The removal of Hemphill’s tumor, which was three to four millimeters in size, put an end to her Cushing’s Disease and her symptoms, though it took six months to a year for Hemphill to feel normal. (She was prescribed cortisol for six months until her adrenal glands could restart producing cortisol on their own.)
“Sometimes it’s very hard to make a diagnosis for pituitary tumors because we don’t see them in the MRIs,” said Borghei-Razavi.
“We call it MRI Negative Cushing’s Syndrome. It means we don’t see it in the MRI, but the cells are there,” he said.
Borghei-Razavi and Hemphill credit the Inferior Petrosal Sinus Sampling (IPSS) test as pinpointing her tumor. Cleveland Clinic Weston is among only a handful of medical practices in South Florida that use this technique.
Three Ways to Remove the Tumor
Most pituitary tumors are benign. The challenge is when it comes to removing the tumor.
“Pituitary tumors come in all shapes and sizes,” says Dr. Zoukaa Sargi, a head and neck surgeon at Sylvester Comprehensive Cancer Center at the University of Miami.
“There are non-functional tumors that do not secrete hormones that can reach extreme sizes of up to 10 centimeters before coming to medical attention. This is the equivalent of the size of a grapefruit,” he says.
“Then there are functional tumors that produce hormones that are typically discovered much sooner and can be only a few millimeters in size before coming to medical attention. A small proportion, less than 1%, are malignant,” he adds.
There are three treatment options for pituitary tumors: surgical removal, medical therapy and radiation.
“Medical therapy is only applicable in certain functional tumors that produce hormones,” says Dr. Ricardo Komotar, a neurosurgeon who is director of the Sylvester Comprehensive Cancer Center Brain Tumor Initiative.
“Radiation is an option primarily for inoperable tumors with high surgical risk. Surgical removal is the optimal treatment in the vast majority of pituitary cases, conferring the greatest benefit with the lowest morbidity,” he says.
Dr. Rupesh Kotecha, chief of radiosurgery at Miami Cancer Institute (MCI), part of Baptist Health South Florida, says there are a number of different hormones that the pituitary gland can secrete.
“Prolactin is the most common form of pituitary adenoma that’s functioning and accounts for 30% to 50%,” he said.
Excess prolactin can cause the production of breast milk in men and in women who are not pregnant or breastfeeding.
Kotecha said the next most common are growth-hormone secreting tumors, which occur in 10% of patients.
ACTH-secreting adenomas — the kind that Hemphill had — account for 5% of patients, while 1% secrete TSH, which causes the thyroid gland to be overactive.
MCI’s Proton Therapy delivers high-dose radiation that treats the tumor’s area, allowing for surrounding tissues and organs to be spared from the effects of radiation.
“The pituitary gland essentially sits in the middle of the brain,” says Kotecha. “It’s sitting in the middle of all of these critical structures.”
From https://www.miamiherald.com/living/health-fitness/article251653033.html
Hannah B, Pituitary Bio
April 30, 2021
Pituitary pituitary, shin splints, tumor Leave a comment
We first met Hannah Blankenship and heard her story in June 2020. She was diagnosed with Cushing syndrome, which s caused by a tumor on her pituitary gland and creates many complications. Right before the season started, she was cleared to play, even though the tumor was not removed.
Below is adapted from a news item at https://www.wvnstv.com/news/wyoming-east-student-shares-her-life-changing-experience-and-fight-with-cushing-syndrome/
Hannah Blankenship is a rising junior at Wyoming East High School, and in the last two years her life changed dramatically. She was just a 16-year-old girl enjoying homecoming, sports, and friends until her world turned upside down.
“I started to have unbearable pains in my shins. At first we just thought it was shin splits, but it didn’t take long to figure out it was something more,” Hannah said.
Hannah was a stud on the basketball court and also enjoyed running cross country, but that quickly came to a halt.
“I would be playing, and my feet would just fall asleep and my legs would lock up,” Hannah said. “I couldn’t feel anything, I couldn’t move. I just had to stand there. I couldn’t walk, I couldn’t do anything.”
After countless doctors appointments and misdiagnoses, Hannah was diagnosed with Cushing syndrome. She has a tumor on her pituitary glad [sic] which causes it to release too much cortisol into her body, affecting her metabolism and growth hormones. It also affects her energy levels and her ability to recover from workouts.
“Labs are normal, this is normal and I knew this was not normal. I had never felt so helpless,” Jamie Blankenship, Hannah’s mother said. “Once we found out and got that diagnoses and started reading and concentrating on the symptoms, we realized that was definitely what was going on she has every symptom.”
Hannah is not alone in this journey, she has a family who is her backbone, friends, and a community that supports her every day.
“It is really hard to understand why. I just think there are some things in life we will never have an explanation to, but just being around my friends and teammates helps a lot, and I have a great support system that picks me up when I am down,” Hannah said.
There are days that it is hard for her mother to stay strong, but she is so thankful that Hannah has so many that are there for her. She hopes by sharing their journey she will help someone else.
“She has so many in her corner and she stays positive, and knows she is going to come back. I am thankful. I hate that this has happened to her, but I am thankful we have a diagnoses and I hope we can help someone else,” Hannah said.
At the end of the day, it is Hannah’s faith that is getting her through this unbearable journey.
“She has always been up beat and positive, she has all the faith in the world in God and I think that is what has brought her this far,” Jamie said.
Angelique L (Angelique), Undiagnosed Bio
April 24, 2021
Pituitary, Undiagnosed anxiety, bloating, depression, fatigue, hysterectomy, infection, menopause, moonface, pituitary, Prednisone, sleep, weight Leave a comment
I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.
Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.
This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.
2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.
I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy.
So I came here perhaps to find support. Too many of the stories, sound just like me.
Take care all. Thanks for reading.
Angelique
In Memory: Deloreese Daniels Owens, March 16, 2002
March 16, 2021
In Memory, Pituitary endocrinologist, Hormone, In Memory, infections, pituitary 1 Comment
March 16, 2002
Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.
From 2002:
“Touched By a Pituitary Tragedy”
Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.
Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”
Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”
But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”
Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”
P. Hyde, Undiagnosed Bio
March 14, 2021
Cyclic, Male, Other Diagnosis, Prolactinoma, Undiagnosed ACTH, brain fog, Clonazepam, cortisol, cushing's, Cyclic, cyclical Cushing's, Dexamethasone, dexamethasone suppression test, episodic, fatigue, Klonopin, male, Mayo Clinic, pituitary, prolactinoma, saliva, testosterone, weight Leave a comment
48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.
Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.
However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.
I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.
Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.
My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.
This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI. I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.
But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.
One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea. And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.
Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.
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Cheryl, Bilateral Adrenalectomy Patient Bio
March 13, 2021
Adrenal Surgery, Pituitary, Pituitary Surgery, Recurrence, Treatments adrenal glands, bilateral adrenalectomy, BLA, pituitary, pituitary surgery, recurrence Leave a comment
Recently had both adrenal glands removed 5/7/20 after 2 failed pituitary surgeries due to Cushings disease.
Cheryl huth 63 yrs old married to David Huth live in Mount Dora florida.
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MaryO: Adapted From 40 Days of Thankfulness
November 4, 2020
MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments cushing's, Giving Thanks, NIH, pituitary, Thankfulness Leave a comment
I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.
Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.
I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!
When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.
Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!
I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.
In Memory of Dr. Edward Hudson Oldfield ~ September 1, 2017
September 1, 2020
In Memory, MaryO, Pituitary, Pituitary Surgery, Treatments Dr. Ed Oldfield, Harvey Cushing medal, In Memory, MaryO, National Institutes of Health, neurosurgeon, NIH, pituitary, pituitary surgery, transsphenoidal, UVa Leave a comment
Dr. Oldfield was MaryO’s surgeon at the NIH November 3, 1987. This was back in the olden days of transsphenoidal surgery. I honestly expected to die but this man saved my life.
Dr. Edward Hudson Oldfield quietly passed away at home in Charlottesville, Virginia, surrounded by his family on September 1, 2017.
Born on November 22, 1947, in Mt. Sterling Kentucky, he was the son of Ellis Hudson Oldfield and Amanda Carolyn Oldfield. Ed is survived by his wife of 43 years, Susan Wachs Oldfield; a daughter, Caroline Talbott Oldfield; three siblings, Richard Oldfield of Mt. Sterling, Ky., Brenda Oldfield of Lexington, Ky., and Joseph Oldfield (Brenda) of Morehead, Ky.; nieces, Adrienne Petrocelli (Phil) of Cincinnati, Ohio and Keri Utterback (Brad) and nephew, Gabe Oldfield, both of Mt Sterling. His parents and a sister, Bonnie Lee Cherry, predeceased him.
Dr. Oldfield attended the University of Kentucky and graduated from the UK Medical School. He completed two years of surgical residency at Vanderbilt University and spent a year in Neurology at the National Hospital for Nervous Disease in London, England, before completing his neurosurgical residency at Vanderbilt University. After a year in private practice in Lexington, he completed a two-year fellowship at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health in Bethesda, Md.
In 1984, he was named Chief of the Clinical Neurosurgery Section at NINDS and from 1986-2007, he was the Chief of the Surgical Neurology Branch at NIH. He joined the Department of Neurosurgery at the University of Virginia in 2007 where he held the Crutchfield Chair in Neurosurgery and was a Professor of Neurosurgery and Internal Medicine.
He led multidisciplinary efforts in the treatment of pituitary tumors and contributed to the research program in Neurosurgery at UVA. He often said it did not feel he was going to work because he so enjoyed every aspect of his career.
Dr. Oldfield was the author of over 500 original scientific and clinical contributions to medical literature and the co-inventor of patents on convection-enhanced drug delivery and genetic therapy. He served on the editorial boards of Neurosurgery and the Journal of Neurosurgery, where he completed a term of eight years as associate editor. Dr. Oldfield served as vice president and president of the Society of Neurological Surgeons (SNS). He received numerous awards including: the Public Health Superior Service Award; the Grass Medal for Meritorious Research in Neurological Science; the Farber Award; the Distinguished Alumnus Award, University of Kentucky Medical Alumni Association; the Harvey Cushing Medal; and the first annual AANS Cushing Award for Technical Excellence and Innovation in Neurosurgery.
In 2015 he received the Charles B. Wilson Award for “career achievement and substantial contributions to understanding and treatment of brain tumors”. A man of many interests and endless curiosity, Ed found joy in exploring the world around him with a great appetite for adventure, as long as it included variety and history. He preferred outdoor activities, and throughout his life enjoyed hiking, bird watching, photography and especially fly fishing, which provided the kind of peace he treasured in his limited free time. Learning was a priority in every activity. Ed was interested in genealogy and maintained a precise record of his family history, spending over a decade accumulating and scanning family photographs. It was important to him to know from where and whom his family originated. Though he loved to watch sports, especially the UK Wildcats, he did not always follow a particular team he cheered for the underdog.
His love of music was vast, from Arthur Alexander, Etta James, John Prine, Luciano Pavarotti, Van Morrison and Iris Dement, to name a few favorites. Friends and colleagues remember his gentle southern voice, particularly in his advice, “All you have to do is the right thing; everything else will take care of itself.” His family will remember him loving Shakespeare productions, a good barbecue sandwich, Ruth Hunt candy bars, a warm fireplace at Christmas and several beloved dogs.
A Memorial service was held on Monday, September 25, 2017, at the University of Virginia Alumni Hall at 4 p.m. In lieu of flowers the family requests donations be made to Edmond J. Safra Family Lodge at National Institutes of Health, Hospice of the Piedmont, or Piedmont Environmental Council.
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