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MaryO

~Chief Cushie~
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Everything posted by MaryO

  1. Comment added to Brian R, MENS Bio

    Thanks for sharing your story. In February it will be 6 years since I’ve had my pituitary surgery. My health is constantly up and down as well. I was just wondering if you’re treated for depression or anxiety at all? Also, have you found any exercises or physical therapy to be helpful? ...

    Read more at https://cushingsbios.com/2018/12/15/brian-r-mens-bio/

  2. In Memory: Lori Holt

    During the first few days of September 2007, Lori had surgery to remove her adrenal gland.
    She experienced extreme difficulty post surgery and never recovered.

    Read more at https://cushingsbios.com/2015/01/06/in-memory-lori-holt/

  3. In Memory: Jill's Father

    January 5, 2005

    Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were completely aware that he had...'

    Read more at  https://cushingsbios.com/2016/04/29/in-memory-jills-father-january-5-2005/

  4. New Helpful Doctor added to New Jersey

    James K. Liu, MD
    Professor of Neurosurgery
    Director of Skull Base and Pituitary Surgery
    Rutgers University, New Jersey Medical School
    RWJ Barnabas Health

    Read more at https://cushieblogger.com/2019/01/05/helpful-doctors-new-jersey/

     

  5. MaryO

    In Memory: Jill's Father

    January 5, 2005 Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were completely aware that he had...' Read more at https://cushingsbios.com/2016/04/29/in-memory-jills-father-january-5-2005/
  6. Webinar:Treatment Strategies for Prolactinomas

    Learning Objectives:

    • To understand the medical therapies for prolactinomas
    • To understand the roles of surgery for prolactinomas
    • To understand the roles of radiation for prolactinomas

    Read more at https://cushieblogger.com/2019/01/04/webinartreatment-strategies-for-prolactinomas/

  7. Presented by: James K. Liu, MD Professor of Neurosurgery Director of Skull Base and Pituitary Surgery Rutgers University, New Jersey Medical School RWJ Barnabas Health After registering you will receive a confirmation email with information about joining the webinar. Register here Date: January 9, 2019 Time: 3:00PM- 4:00 PM Pacific Standard Time, 6:00 PM - 7:00 PM Eastern Standard Time Learning Objectives: To understand the medical therapies for prolactinomas To understand the roles of surgery for prolactinomas To understand the roles of radiation for prolactinomas Presenter Bio: Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center. Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland. Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas,meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm. As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu's research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery. Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.
  8. Presented by: James K. Liu, MD Professor of Neurosurgery Director of Skull Base and Pituitary Surgery Rutgers University, New Jersey Medical School RWJ Barnabas Health After registering you will receive a confirmation email with information about joining the webinar. Register here Date: January 9, 2019 Time: 3:00PM- 4:00 PM Pacific Standard Time, 6:00 PM - 7:00 PM Eastern Standard Time Learning Objectives: To understand the medical therapies for prolactinomas To understand the roles of surgery for prolactinomas To understand the roles of radiation for prolactinomas Presenter Bio: Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center. Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland. Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas,meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm. As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu's research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery. Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.
  9. MaryO

    In Memory: Lori Holt

    During the first few days of September 2007, Lori had surgery to remove her adrenal gland. She experienced extreme difficulty post surgery and never recovered. Read more at https://cushingsbios.com/2015/01/06/in-memory-lori-holt/
  10. A man with Cushing’s disease  - caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma - who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years.. https://goo.gl/gmP8rS

  11. A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report. The report, “Long-term survival following transformation of an adrenocorticotropic hormone secreting pituitary macroadenoma to a silent corticotroph pituitary carcinoma: Case report,” was published in the journal World Neurosurgery. Pituitary carcinomas make up only 0.1-0.2% of all pituitary tumors and are characterized by a primary pituitary tumor that metastasizes into cranial, spinal, or systemic locations. Fewer than 200 cases have been reported in the literature. Most of these carcinomas secrete hormones, with ACTH being the most common. Though the majority of ACTH-secreting carcinomas present with Cushing’s disease, about one-third do not show symptoms of the condition and have normal serum cortisol and ACTH levels. These are called silent corticotroph adenomas and are considered more aggressive. A research team at the University of Alabama at Birmingham presented the case of a 51-year-old Caucasian man with ACTH-dependent Cushing’s disease. He had undergone an incomplete transsphenoidal (through the nose) resection of an ACTH-secreting pituitary macroadenoma – larger than 10 mm in size – and radiation therapy the year before. At referral in August 1997, the patient had persistent high cortisol levels and partial hypopituitarism, or pituitary insufficiency. He exhibited Cushing’s symptoms, including facial reddening, moon facies, weight gain above the collarbone, “buffalo hump,” and abdominal stretch marks. About two years later, the man was weaned off ketoconazole — a medication used to lower cortisol levels — and his cortisol levels had been effectively reduced. He also had no physical manifestations of Cushing’s apart from facial reddening. In May 2010, the patient reported two episodes of partial seizures, describing two spells of right arm tingling, followed by impaired peripheral vision. Imaging showed a 2.1-by-1-cm mass with an associated cyst within the brain’s right posterior temporal lobe, as well as a 1.8-by-1.2-cm mass at the cervicomedullary junction, which is the region where the brainstem continues as the spinal cord. His right temporal cystic mass was then removed by craniotomy. A histopathologic analysis was consistent with pituitary carcinoma. Cell morphology was generally similar to the primary pituitary tumor, but cell proliferation was higher. Physical exams showed no recurrence of Cushing’s disease and 24-hour free urinary cortisol was within the normal range. His cervicomedullary metastasis was treated with radiation therapy in July 2010. He took the oral chemotherapy temozolomide until August 2011, and Avastin (bevacizumab, by Genentech) was administered from September 2010 to November 2012. At present, the patient continues to undergo annual imaging and laboratory draws. He receives treatment with hydrocortisone, levothyroxine — synthetic thyroid hormone — and testosterone replacement with androgel. His most recent exam showed no progression over eight years of a small residual right temporal cyst, a residual mass along the pituitary stalk — the connection between the hypothalamus and the pituitary gland — and a small residual mass at the cervicomedullary junction. Lab results continue to show no Cushing’s recurrence. “Our case is the first to document a patient who initially presented with an endocrinologically active ACTH secreting pituitary adenoma and Cushing’s disease who later developed cranial and spinal metastases without recurrence of Cushing’s disease and transformation to a silent corticotroph pituitary carcinoma,” the scientists wrote. They added that the report is also the first documenting “8 years of progression-free survival in a patient with pituitary carcinoma treated with radiotherapy, [temozolomide] and bevacizumab.” Adapted from https://cushingsdiseasenews.com/2019/01/03/successful-treatment-pituitary-carcinoma-radiation-chemo-case-report/
  12. Caryl, Undiagnosed Bio

    Caryl is from Philippines.  She is not yet diagnosed with Cushing's but her OB-GYN told her she has PCOS.  She has several other Cushing's symptoms.

    Read more at https://cushingsbios.com/2018/12/31/caryl-undiagnosed-bio/

  13. Comment added to Rachel, Undiagnosed Bio

    Hi Rachel, I’m 27 and share very similar symptoms with you. I luckily have a great primary care doc who I can talk to about this during my next appt. I’d love to compare notes! Feel free to reach out.

    Read the original bio at https://cushingsbios.com/2017/04/03/rachel-undiagnosed-bio/

  14. A 42-year-old woman who presented to hospital with acute vision loss in her right eye was diagnosed with a benign tumour in her adrenal gland. Writing in BMJ Case Reports, clinicians described how the patient presented with a visual acuity of 6/36 in her right eye and 6/6 in her left eye. Investigations revealed an exudative retinal detachment in her right eye as well as a pigment epithelial detachment. The patient had multifocal central serous retinopathy in both eyes. The woman, who had hypertension and diabetes, was diagnosed with Cushing syndrome and a right adrenal adenoma was also discovered. During a treatment period that spanned several years, the patient received an adrenalectomy followed by a maintenance dose of steroids. The patient subsequently developed central serous retinopathy again which the clinicians believe might be related to steroid use. The authors advised “careful deliberation” in prescribing a maintenance dose of steroids following removal of the adrenal glands because of the potential link to retinopathy. From https://www.aop.org.uk/ot/science-and-vision/research/2018/12/17/vision-loss-the-first-sign-of-adrenal-tumour-in-42-year-old-patient
  15. Comment added to Diana M (dbear12003), Adrenal Bio

    This could be me! I need to talk to the person who wrote this. We have so much in common! We need to chat,

    Read the original bio at https://cushingsbios.com/2015/06/16/diana-m-dbear12003-adrenal-bio/

  16. MaryO

    Happy Holidays!

  17. Brian is from Pendleton, IN  He had thyroid surgery in October 2015 and a second in December 2015.  He also has had pituitary surgery.  In July 2018 blood tests confirmed his Cushing's is back.

    Read his bio at https://cushingsbios.com/2018/12/15/brian-r-mens-bio/

  18. 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/

  19. 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
  20. 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!
  21. 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

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

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

  23. 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!
  24. 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.
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