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  2. Transsphenoidal surgery remains the mainstay therapy for CD in pediatric patients as well as adults. It is an effective treatment option with low rate of complications. Both endoscopic and microscopic approaches provide safe access to sella and satisfactory surgical results.

    Read more at https://cushieblog.com/2018/12/13/neurosurgical-treatment-of-cushing-disease-in-pediatric-patients-case-series-and-review-of-literature/

  3. Childs Nerv Syst. 2018 Nov 28. doi: 10.1007/s00381-018-4013-5. [Epub ahead of print] Gazioglu N1, Canaz H2, Camlar M3, Tanrıöver N4, Kocer N5, Islak C5, Evliyaoglu O6, Ercan O6. Author information Abstract AIM: Pituitary adenomas are rare in childhood in contrast with adults. Adrenocorticotropic hormone (ACTH)-secreting adenomas account for Cushing's disease (CD) which is the most common form of ACTH-dependent Cushing's syndrome (CS). Treatment strategies are generally based on data of adult CD patients, although some difficulties and differences exist in pediatric patients. The aim of this study is to share our experience of 10 children and adolescents with CD. PATIENTS AND METHOD: Medical records, images, and operative notes of 10 consecutive children and adolescents who underwent transsphenoidal surgery for CD between 1999 and 2014 in Cerrahpasa Faculty of Medicine were retrospectively reviewed. Mean age at operation was 14.8 ± 4.2 years (range 5-18). The mean length of symptoms was 24.2 months. The mean follow-up period was 11 years (range 4 to 19 years). RESULTS: Mean preoperative cortisol level was 23.435 μg/dl (range 8.81-59.8 μg/dl). Mean preoperative ACTH level was 57.358 μg/dl (range 28.9-139.9 μg/dl). MR images localized microadenoma in three patients (30%), macroadenoma in four patients (40%) in our series. Transsphenoidal microsurgery and endoscopic transsphenoidal surgery were performed in 8 and 2 patients respectively. Remission was provided in 8 patients (80%). Five patients (50%) met remission criteria after initial operations. Three patients (30%) underwent additional operations to meet remission criteria. CONCLUSION: Transsphenoidal surgery remains the mainstay therapy for CD in pediatric patients as well as adults. It is an effective treatment option with low rate of complications. Both endoscopic and microscopic approaches provide safe access to sella and satisfactory surgical results. KEYWORDS: Cushing’s disease; Endoscopic pituitary surgery; Pediatric; Transsphenoidal microsurgery PMID: 30488233 DOI: 10.1007/s00381-018-4013-5 Full Text
  4. MaryO

    Please help!!

    Yes - I can add him to the Helpful doctors lists like this one: https://cushieblogger.com/2018/11/19/helpful-doctors-oregon/ and to the Cushing's MemberMap at https://www.google.com/maps/d/u/0/viewer?mid=1NLdGqTJyaJOvxegUnUR_slLRcYyMsVbJ&ll=3.8633242368885425%2C-113.44413728043901&z=1 in the section for doctors. Thanks so much!
  5. Today
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  7. DonnaFromAZ

    Please help!!

    Is there any way for you to post this for all to see? The Doctor that I am seeing is Dr. Zwart. He is located in Tucson Arizona. Tucson Endocrine Associates. 5910 N La Cholla Blvd. Tucson Arizona, 85741. (520) 297-0404
  8. Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick!

    Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth.

    Read more at https://goo.gl/SPthiu

  9. New helpful endocrinologist specializing in Cushing's added to Pennsylvania. 

     https://cushieblogger.com/2018/12/12/helpful-doctors-pennsylvania/

  10. MaryO

    Please help!!

    This is such great news, Donna - the endo sounds fantastic. Can you please share his info with others so that they might have a faster diagnosis, too? Hopefully, surgery will be soon and on to remission!
  11. Last week
  12. DonnaFromAZ

    Please help!!

    Thank you Shaw. The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon. The tears just rolled down my face. I just want my life back! I promise never to take life for granted again.
  13. Shaw

    Please help!!

    That's fantastic! Getting a doctor who will thoroughly test you is one of the hardest parts of the disease. Nobody wants to be sick of have Cushing's but with a lot of us it's gets to a stage where you just know in your gut what's going on and then you have to fight with doctors to get them to listen. I hope testing is quick and the proof comes back right away so you can get back to feeling like a human again.
  14. DonnaFromAZ

    Please help!!

    I Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. Now, to prove it. I Walked away with a long list of labs to do, including...blood, urine, and saliva. Although I already knew in my heart that this is what I had, it was still very hard to hear. I know this is not gonna be an easy road to travel and I would be lying if I said I wasn’t scared. (I’m terrified) I had a hysterectomy 4 years ago and ended up with sepsis, e-coli, c-diff, just to name a few. It nearly ended my life. I’ll keep you guys updated when I know more. Thanks to everyone that has helped me along the way and to those that will continue to do so.
  15. Earlier
  16. For those who can not make it to Washington, DC next week, we're pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing. Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing: The Diagnostic Odyssey Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m. 121 Cannon House Office Building Complimentary lunch included Registration available on-site Register for the event livestream by clicking this link. If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.
  17. For those who can not make it to Washington, DC next week, we're pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing. Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing: The Diagnostic Odyssey Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m. 121 Cannon House Office Building Complimentary lunch included Registration available on-site Register for the event livestream by clicking this link. If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.
  18. Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To understand the role of surgery in the treatment of pituitary tumors To understand the advantages and disadvantages of different surgical approaches in the treatment of pituitary tumors To understand the risks and benefits associated with different surgical strategies Presenter Bios: Mario Zuccarello, MD Neurosurgeon Mario Zuccarello, MD, is currently a Professor of Neurosurgery in the Department of Neurosurgery at the University of Cincinnati. He was the Frank H. Mayfield Chair for Neurological Surgery and Chairman of the Department of Neurosurgery from 2009-2017. Dr. Zuccarello is also a member of the University of Cincinnati Gardner Neuroscience Institute and the Greater Cincinnati/Northern Kentucky Stroke Team. Dr. Zuccarello is dedicated to clinical research in neurovascular disease and the development of new neurosurgical techniques for the treatment of stroke, cerebral hemorrhage, vasospasm, carotid artery disease, and moyamoya disease. While Cincinnati has become widely known for its leadership in stroke research, treatment, and the development of clot-busting drugs, Dr. Zuccarello has led a quiet revolution in the prevention and treatment of brain hemorrhages, which rank among the most hazardous conditions of the brain. Dr. Zuccarello graduated summa cum laude from the Gymnasium in Catania, Italy, in 1970. He received his medical degree from the University of Padova, Italy, in 1976, and completed his residency in neurosurgery from Padova, with summa cum laude honors, in 1980. He subsequently performed research fellowships at the University of Iowa and the University of Virginia Medical Center, Charlottesville, and a clinical fellowship at the University of Cincinnati. He was inducted into Alpha Omega Alpha, the national medical honor society in 2001 and has been named to the Best Doctors in America since 2005. In 2013, he received recognition by members of the Vasospasm consortium for his dedication and outstanding accomplishments in the field of experimental and clinical research on subarachnoid hemorrhage. Jonathan A. Forbes, MD Neurosurgeon Dr. Forbes is a fellowship-trained neurosurgeon with expertise and interest in open and minimally-invasive approaches for treatment of pathology of the cranial base. He has a long and distinguished history of academic recognition, commitment to excellence, and service to our country. As an undergraduate at Grove City College, he was a recipient of the Trustee Scholarship and was named Sportsman of the Year after his senior season of varsity football. Following the events of 9/11, he enrolled in the Health Professions Scholarship Program with the United States Air Force. In medical school at the University of Pittsburgh, he was a recipient of the David Glasser Honors’ Award for academic performance. During neurosurgical residency at Vanderbilt University, he received numerous national accolades—including the AANS Synthes Craniofacial Award for Research in Neurotrauma as well as the AANS Top Gun Award. His score on the American Board of Neurological Surgery (ABNS) written board examination during his fourth year of residency was recognized in the top 3% nationwide. After completing his chief year of neurosurgical residency at Vanderbilt in 2013, Dr. Forbes went on to fulfill a 4-year commitment with the U.S. Air Force that included a 6-month deployment to Bagram Air Force Base in Afghanistan. Humanitarian care he provided at the Craig Joint Theater Hospital in Bagram has been featured in numerous neurosurgical journals—including Journal of Neurosurgery, World Neurosurgery and Neurosurgical Focus—and recognized on a national level by the USAF as part of the “Through Airmen’s Eyes” series. After honorable discharge from the military, he completed a minimally-invasive skull base fellowship at Weill Cornell Medical Center in New York City under the guidance of Dr. Theodore Schwartz prior to joining the UC Department of Neurosurgery. To date, Dr. Forbes has contributed to over 40 peer-reviewed publications.
  19. Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To understand the role of surgery in the treatment of pituitary tumors To understand the advantages and disadvantages of different surgical approaches in the treatment of pituitary tumors To understand the risks and benefits associated with different surgical strategies Presenter Bios: Mario Zuccarello, MD Neurosurgeon Mario Zuccarello, MD, is currently a Professor of Neurosurgery in the Department of Neurosurgery at the University of Cincinnati. He was the Frank H. Mayfield Chair for Neurological Surgery and Chairman of the Department of Neurosurgery from 2009-2017. Dr. Zuccarello is also a member of the University of Cincinnati Gardner Neuroscience Institute and the Greater Cincinnati/Northern Kentucky Stroke Team. Dr. Zuccarello is dedicated to clinical research in neurovascular disease and the development of new neurosurgical techniques for the treatment of stroke, cerebral hemorrhage, vasospasm, carotid artery disease, and moyamoya disease. While Cincinnati has become widely known for its leadership in stroke research, treatment, and the development of clot-busting drugs, Dr. Zuccarello has led a quiet revolution in the prevention and treatment of brain hemorrhages, which rank among the most hazardous conditions of the brain. Dr. Zuccarello graduated summa cum laude from the Gymnasium in Catania, Italy, in 1970. He received his medical degree from the University of Padova, Italy, in 1976, and completed his residency in neurosurgery from Padova, with summa cum laude honors, in 1980. He subsequently performed research fellowships at the University of Iowa and the University of Virginia Medical Center, Charlottesville, and a clinical fellowship at the University of Cincinnati. He was inducted into Alpha Omega Alpha, the national medical honor society in 2001 and has been named to the Best Doctors in America since 2005. In 2013, he received recognition by members of the Vasospasm consortium for his dedication and outstanding accomplishments in the field of experimental and clinical research on subarachnoid hemorrhage. Jonathan A. Forbes, MD Neurosurgeon Dr. Forbes is a fellowship-trained neurosurgeon with expertise and interest in open and minimally-invasive approaches for treatment of pathology of the cranial base. He has a long and distinguished history of academic recognition, commitment to excellence, and service to our country. As an undergraduate at Grove City College, he was a recipient of the Trustee Scholarship and was named Sportsman of the Year after his senior season of varsity football. Following the events of 9/11, he enrolled in the Health Professions Scholarship Program with the United States Air Force. In medical school at the University of Pittsburgh, he was a recipient of the David Glasser Honors’ Award for academic performance. During neurosurgical residency at Vanderbilt University, he received numerous national accolades—including the AANS Synthes Craniofacial Award for Research in Neurotrauma as well as the AANS Top Gun Award. His score on the American Board of Neurological Surgery (ABNS) written board examination during his fourth year of residency was recognized in the top 3% nationwide. After completing his chief year of neurosurgical residency at Vanderbilt in 2013, Dr. Forbes went on to fulfill a 4-year commitment with the U.S. Air Force that included a 6-month deployment to Bagram Air Force Base in Afghanistan. Humanitarian care he provided at the Craig Joint Theater Hospital in Bagram has been featured in numerous neurosurgical journals—including Journal of Neurosurgery, World Neurosurgery and Neurosurgical Focus—and recognized on a national level by the USAF as part of the “Through Airmen’s Eyes” series. After honorable discharge from the military, he completed a minimally-invasive skull base fellowship at Weill Cornell Medical Center in New York City under the guidance of Dr. Theodore Schwartz prior to joining the UC Department of Neurosurgery. To date, Dr. Forbes has contributed to over 40 peer-reviewed publications.
  20. In Memory: Millie Niss Millie is the first Cushing’s patient that I know of to have died from complications from Swine Flu.  She was only 36.

    Millie developed a confirmed case of the H1N1 virus. She spent 29 days in the ICU of Millard Suburban Hospital before dying of complications of the flu, compounded by Behcet’s Disease and Cushings Disease.

    Read more at https://goo.gl/VEsjdt

  21. Mak is from California  She has been having a really rough couple years with a multitude of symptoms.  A  6mm microadenoma was found on her pituitary gland.

    Read her bio at https://cushingsbios.com/2018/11/26/mak-m-pituitary-bio/

  22. MaryO

    Webinar with Dr. Friedman

    until
    Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6 PM PST Adult growth hormone deficiency occurs in patients with hypopituitarism and can occur in those with a pituitary tumor. A growth hormone stimulation test is needed to make the diagnosis of adult growth hormone deficiency. Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6-7 PM PST. He will discuss the new Macrilen stimulation test and compare it to the glucagon stimulation. If you may have growth hormone deficiency, you do not want to miss this webinar. 6:00 pm | Pacific Standard Time, 9:00 pm Eastern Standard Time Meeting number (access code): 284 045 554, Meeting password: growth join the meeting at https://axisconciergemeetings.webex.com/webappng/sites/axisconciergemeetings/meeting/info/112079331212153316?MTID=ma5789d4e965d2af1c3ceedc7d92172c7 Slides will be available before the webinar at https://www.dropbox.com/sh/6lk0cmx5ae0bv7t/AADtLykFSioSmiRm6Rf4_tyta?dl=0 Join by phone +1-855-797-9485 US Toll free You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.
  23. Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6 PM PST Adult growth hormone deficiency occurs in patients with hypopituitarism and can occur in those with a pituitary tumor. A growth hormone stimulation test is needed to make the diagnosis of adult growth hormone deficiency. Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6-7 PM PST. He will discuss the new Macrilen stimulation test and compare it to the glucagon stimulation. If you may have growth hormone deficiency, you do not want to miss this webinar. 6:00 pm | Pacific Standard Time, 9:00 pm Eastern Standard Time Meeting number (access code): 284 045 554, Meeting password: growth join the meeting at https://axisconciergemeetings.webex.com/webappng/sites/axisconciergemeetings/meeting/info/112079331212153316?MTID=ma5789d4e965d2af1c3ceedc7d92172c7 Slides will be available before the webinar at https://www.dropbox.com/sh/6lk0cmx5ae0bv7t/AADtLykFSioSmiRm6Rf4_tyta?dl=0 Join by phone +1-855-797-9485 US Toll free You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.
  24. Louise from Washington   She has ACTH independent bilateral adrenal hyperplasia.

    Read her bio at https://cushingsbios.com/2018/11/23/louise-adrenal-bio/

  25. Comment added to Sahana (Sahana), Adrenal Bio

    How is your daughter doing? I have an adrenal adenoma and am having a right adrenalectomy soon...

    https://cushingsbios.com/2018/11/14/sahana-sahana-adrenal-bio/

  26. Krista shared her helpful doctor, Maria Fleseriu, in her bio.  Read about this Oregon doctor at https://cushieblogger.com/2018/11/19/helpful-doctors-oregon/

  27. Krista is from Eugene, OR   She had pituitary surgery in April, 2018.  She has also dealt with thyroid cancer.  https://cushingsbios.com/2018/11/19/krista-pituitary-bio/

  28. I'm having to rebuild the Cushing's Member Map from old info and the newer bios that are coming in.  Find the new MemberMap here

    Add your information - or your doctor's - at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/

    1. MaryO

      MaryO

      I think I'm nearly half done with the rebuild :)

      New entries always welcome!

  29. Sahana is from Mumbai India   Her daughter had many Cushings symptoms starting at 15.  She had laparoscopic adrenal surgery and is now 7 months post-op.

    Read more at https://cushingsbios.com/2018/11/14/sahana-sahana-adrenal-bio/

  30. Pituitary Tumors Affect Patients’ Ability to Work, Reduce Quality of Life Pituitary tumor conditions, such as Cushing’s disease, have a substantial effect on patients’ work capabilities and health-related quality of life, researchers from The Netherlands reported. The study, “Work disability and its determinants in patients with pituitary tumor-related disease,” was published in the journal Pituitary. Pituitary tumors, like those that cause Cushing’s disease, have significant effects on a patient’s physical, mental, and social health, all of which influence their work status and health-related quality of life. However, the effects of the disease on work status is relatively under-investigated, investigators report. Here, researchers evaluated the work disability among patients who were treated for pituitary tumors in an attempt to understand the impact of disease diagnosis and treatment on their social participation and ability to maintain a paying job. In their study, researchers examined 241 patients (61% women) with a median age of 53 years. The majority (27%) had non-functioning pituitary tumors, which do not produce excess hormones, but patients with acromegaly, Cushing’s disease, prolactinomas, and Rathke’s cleft cyst also were included. Participants were asked to complete questionnaires to evaluate their health-related quality of life and disease-specific impact on their work capabilities. Each participant completed a set of five questionnaires. Participants also reported their hormonal status and demographic data, including gender, age, education, and marital status. Specific information, such as disease diagnosis, treatment, and tumor type was obtained from their medical records. Work status and productivity were assessed using two surveys, the Short-Form-Health and Labour Questionnaire (SF-HLQ) and the work role functioning questionnaire 2.0 (WRFQ). SF-HLQ was used to obtain information on the participants’ employment and their work attendance. Employment was either paid or unpaid. (Participation in household chores was considered not having a paid job.) WRFQ is a 27-question survey that determines work disability regarding being able to meet the productivity, physical, emotional, social, and flexible demands. A higher score indicates low self-perceived work disability. Disease-specific mood problems, social and sexual functioning issues, negative perceptions due to illness, physical and cognitive difficulties, were assessed using a 26-item survey called Leiden Bother and Needs for Support Questionnaire for pituitary patients(LBNQ-Pituitary). Overall, 28% of patients did not have a paid job, but the rates increased to 47% among those with Cushing’s disease. Low education, hormonal deficits, and being single were identified as the most common determinants of not having a paid job among this population. Further analysis revealed that more patients with Cushing’s disease and acromegaly had undergone radiotherapy. They also had more hormonal deficits than others with different tumor types. Overall, patients with a paid job reported working a median of 36 hours in one week and 41% of those patients missed work an average of 27 days during the previous year. Health-related problems during work also were reported by 39% with a paid job. Finally, health-related quality of life was determined using two questionnaires: SF-36 and EQ-5D. The physical, mental, and emotional well being was measured with SF-36, while ED-5D measured the health outcome based on the impact of pain, mobility, self-care, usual activities, discomfort, and anxiety or depression. In both SF-36 and EQ-5D, a higher score indicates a better health status. Statistical analysis revealed that the quality of life was significantly higher in patients with a job. Overall, patients with a paid job reported better health status and higher quality of life than those without a paid job. Although 40% of the patients reported being bothered by health-related problems in the past year, only 12% sought the help of an occupational physician, the researchers reported. “Work disability among patients with a pituitary tumor is substantial,” investigators said. “The determinants and difficulties at work found in this study could potentially be used for further research, and we advise healthcare professionals to take these results into consideration in the clinical guidance of patients,” they concluded. From https://cushingsdiseasenews.com/
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