News Articles February 2022
Written on 04 February 2022.
News Articles February 2025
Pituitary journey: woman learns to slow down while facing melanoma, pituitary inflammation
Blogger Amanda Goodwin is a hard-charging businesswoman, who was forced to slow down and “embrace the sick” as she battled melanoma in her lungs, liver and brain, and suffered from inflammation of the pituitary. Read more here: https://substack.com/home/post/p-156259244?utm_campaign=post&utm_medium=web
Study: Cushing’s patients develop cataracts at younger ages
An article in Cushing’s Disease News examines a study published in Graefe’s Archive for Clinical and Experimental Ophthalmology, that finds that Cushing’s patients are at higher risk of developing cataracts at a younger age compared to non-Cushing’s patients. They developed them at an average age of 48.1. Patients with Cushing’s Syndrome “being 34% more likely to develop cataracts than the general population. For those with Cushing’s disease, the risk was 39% higher.” Read more: https://cushingsdiseasenews.com/news/cushings-patients-higher-risk-developing-cataracts-younger-age/
Pituitary Journey: British celebrity astrologer recounts battle with pituitary tumor
Russell Grant, a celebrity astrologer in the U.K. who competed on the show “Strictly Come Dancing” recounts his battle with a pituitary tumor, diabetes, and now vision issues. Read more: https://tinyurl.com/44zujvkm
Houston Hospital gets $2 million in donations for pituitary research
Houston Methodist hospital announced it has commitments to receive 2 million dollars to support its Kenneth R. Peak Brain & Pituitary Treatment Center. $1.5 million comes from the Henry J.N. Taub Foundation and is paired with an anonymous $500,000 donation. Read more: https://philanthropynewsdigest.org/news/houston-methodist-receives-1.5-million-for-brain-pituitary-research
PNA Highlights February 2025
“The man who earns a million, but destroys his health in the process is not really a success.” – Zig Ziglar
PNA Spotlight: Dr. Kevin Lillehei
Dr. Kevin Lillehei is chair of the Department of Neurosurgery at the University of Colorado School of Medicine in Aurora, Colorado. He started there in 1985 and his primary work is with benign and malignant brain tumors. He is also codirector of their Pituitary Center of Excellence, and director of the neurosurgery oncology fellowship. He did his undergraduate work at Cornell University in New York, where he double majored in physics and chemistry. He then went to medical school at the University of Minnesota and did his residency at the University of Michigan in Ann Arbor, where he really became interested in pituitary tumors. His mentor was Dr. William Chandler, who, at the time, did virtually all of the pituitary tumors at the University of Michigan. When Dr. Lillihei left Michigan, he spent two years at the University of Colorado’s trauma hospital, which at the time was called Denver General Hospital. After two years there, he transferred over to the University Hospital. He was kind enough to answer a series of questions from the PNA about his career.
What inspired you to choose your career path?
At the University of Colorado, they really needed somebody to take over the pituitary tumor surgery part. And I was lucky enough to been at Colorado at the same time as an endocrinologist by the name of Dr. E. Chester Ridgway. And Dr. Ridgway had just come to the University of Colorado from Mass General and the two of us really joined forces and established the pituitary surgery at that time around 1987. In our pituitary program we do about 140 cases a year, and have a very large network of other interdisciplinary departments that we all work with.
What message would you like to convey to your patients?
Read More Here
Virtual reality facilitates pituitary tumor resection
Surgery to remove complex pituitary tumors can be challenging, due to the pituitary gland’s location at the base of the skull. To safely reach and remove the tumor, surgeons need deep knowledge of a patient’s skull base anatomy — especially the course of the carotid arteries, which are located on both sides of the pituitary gland and deliver blood to the brain.
“From afar, all pituitary glands might look the same. But surgery is safest when the surgeon understands unique variations in each individual’s anatomy,” says Dr. Bernard R. Bendok, chair of Neurosurgery at Mayo Clinic in Arizona.
Fortunately, neurosurgeons have new imaging tools. Virtual and augmented reality simulations provide 3D visualization of a patient’s skull base and tumor. The visualizations help the treatment team plan the best approach for each individual.
“It’s important for the team to rehearse and have in their minds a 3D picture of the patient’s microanatomy,” Dr. Bendok says. “Mayo Clinic is one of the few centers that has truly integrated virtual and augmented reality into skull base practice.”
During surgery, 3D visualizations can be superimposed onto the patient’s anatomy. “That gives us a kind of ‘X-ray vison’ to see the artery behind the bones and to avoid injury. We can toggle between the imaging and the patient’s anatomy, which is a big benefit,” Dr. Bendok says.
Projecting the visualization onto screens in the operating room allows the entire surgical team to be more informed and engaged in the procedure. “That leads to more safety and accelerates learning curves,” Dr. Bendok says. “Back when I was training, surgeons looked at the surgical field through their own binoculars. Students in the operating room had limited vision of what the surgeons were actually doing. Now, the whole room can follow every nuance throughout the case.”
Virtual and augmented reality simulations also boost patients’ understanding of their tumors. “All our patients get an avatar built with virtual reality. They can put on a headset and walk around their tumor,” Dr. Bendok says. “For most patients, the skull base is a black box. Visualizing it in 3D helps remove the fear of the unknown, and it makes the patient more of a partner in their care.”
“For surgeons, practice makes perfect,” he says. “But conceptualizing the surgery before it happens — visualizing the procedure and understanding how your hands should follow that vision — is at least as important as technique.”
Count on your Xeris CareConnection™ Team for unparalleled Cushing’s Support
Cushing’s can be challenging, but there is support so patients can feel like themselves again. The main goal of treating Cushing’s is to get cortisol levels back to normal. This Pituitary Awareness Month, Xeris Pharmaceuticals® is highlighting the importance of one-on-one support for patients living with Cushing’s Syndrome and support for HCPs treating Cushing’s Syndrome.
Sign up to get dedicated support:
Patients: Sign up for support | Recorlev® (levoketoconazole)
HCP’s: Connect with Xeris support | RECORLEV® (levoketoconazole)
Have more questions? Call for more support at 1-844-444-RCLV (7258)
Copyright © 2024 Pituitary Network Association All rights reserved.
Disclaimer: PNA does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical expertise. In all cases, PNA recommends that you consult your own physician regarding any course of treatment or medication.
Our mailing address is:
Pituitary Network Association
P.O. Box 1958
Thousand Oaks, CA 91358
(805) 499-9973 Phone - (805) 480-0633 Fax
Email [email protected]
You are receiving this Newsletter because you have shown interest in receiving information about our activities.
If you do not want to receive any more emails from PNA, Unsubscribe.
February 2025 Research Articles
Pituitary Tumors
Kilci F, Sarikaya E, Murat NÖ, Deniz A.Endocrine. 2025 Feb 2. doi: 10.1007/s12020-025-04176-0. Online ahead of print.
Conservative medical therapy for a macroprolactinoma presenting with obstructive hydrocephalus.
Cuaño PMGM, Isip-Tan IT, Chan KIP.BMJ Case Rep. 2025 Jan 31;18(1):e261540. doi: 10.1136/bcr-2024-261540.
Zhang S, Xie B, He Y, Zhang X, Gong G, Li M, Chen Y, Tang G, Zhang C, Qin C, Liu Q.J Cancer Res Clin Oncol. 2025 Jan 31;151(2):57. doi: 10.1007/s00432-025-06104-1.
Mental Health and Pituitary Issues
Psychological burden in patients with sellar masses under conservative and surgical management.
Kalasauskas D, Ernst A, Mireri S, Keric N, Thavarajasingam SG, Omran W, Wüster C, Ringel F, Conrad J.Neurosurg Rev. 2025 Jan 30;48(1):104. doi: 10.1007/s10143-025-03240-7.
Zhou Y, Qian M, Wang S, Zhou X, Zhou M, Gu Z, Sun M, Yang T.Eur J Oncol Nurs. 2025 Jan 28;74:102815. doi: 10.1016/j.ejon.2025.102815. Online ahead of print.
Pituitary Surgery
Fu J, Luo W, Zhang C, Wang Z, Fan W, Lin Y, Kang D, Song J, Jiang C, Yan X.Chin Neurosurg J. 2025 Feb 3;11(1):3. doi: 10.1186/s41016-025-00389-4.PMID: 39894800
Khaleghi M, Shahid AH, Suggala S, Dyess G, Hummel UN, Chason DN, Butler D, Thakur JD.Neurosurg Focus. 2025 Feb 1;58(2):E6. doi: 10.3171/2024.11.FOCUS24733.
Lasica N, Lesha E, Beckfort NS, Arnautovic KI.Neurosurg Focus. 2025 Feb 1;58(2):E3. doi: 10.3171/2024.11.FOCUS24665.
Kong DS, Kim YH, Hong SD, Ryu G, Kim JH, Hong CK, Kim YH.Neurosurg Focus. 2025 Feb 1;58(2):E2. doi: 10.3171/2024.11.FOCUS24624.
Petito G, Hu A, Zhang G, Min S, Tripathi SH, Kumar A, Shukla G, Shah S, Phillips KM, Jana S, Forbes JA, Zuccarello M, Andaluz NO, Sedaghat AR.J Neurol Surg B Skull Base. 2024 Feb 2;86(1):39-45. doi: 10.1055/a-2235-7419. eCollection 2025 Feb.PMID: 39881750
Cushing’s
Shivnani P, Kasliwal R, Goyal G, Sharma J, Balani U, Gupta P, Sharma BS, Yadav D, Mishra V, Sharma SK.Indian J Endocrinol Metab. 2024 Nov-Dec;28(6):589-595. doi: 10.4103/ijem.ijem_60_24. Epub 2024 Dec 30.
Hormonal health
Long BY, Liao X, Liang X.Neuroendocrinology. 2025 Jan 31:1-26. doi: 10.1159/000543877. Online ahead of print.
Gu W, Zhang W, Wu Z, Cai Y.J Neurooncol. 2025 Feb 1. doi: 10.1007/s11060-025-04949-7. Online ahead of print.
PNA Spotlight: Dr. Kevin Lillehei
Dr. Kevin Lillehei is chair of the Department of Neurosurgery at the University of Colorado School of Medicine in Aurora, Colorado. He started there in 1985 and his primary work is with benign and malignant brain tumors. He is also codirector of their Pituitary Center of Excellence, and director of the neurosurgery oncology fellowship. He did his undergraduate work at Cornell University in New York, where he double majored in physics and chemistry. He then went to medical school at the University of Minnesota and did his residency at the University of Michigan in Ann Arbor, where he really became interested in pituitary tumors. His mentor was Dr. William Chandler, who, at the time, did virtually all of the pituitary tumors at the University of Michigan. When Dr. Lillihei left Michigan, he spent two years at the University of Colorado’s trauma hospital, which at the time was called Denver General Hospital. After two years there, he transferred over to the University Hospital. He was kind enough to answer a series of questions from the PNA about his career.
What inspired you to choose your career path?
At the University of Colorado, they really needed somebody to take over the pituitary tumor surgery part. And I was lucky enough to been at Colorado at the same time as an endocrinologist by the name of Dr. E. Chester Ridgway. And Dr. Ridgway had just come to the University of Colorado from Mass General and the two of us really joined forces and established the pituitary surgery at that time around 1987. In our pituitary program we do about 140 cases a year, and have a very large network of other interdisciplinary departments that we all work with.
What message would you like to convey to your patients?
The treatment of pituitary tumors in each individual is unique, but the approach really has to be multi-disciplinary to get the best care. And I think that’s critically important that you’ve got a team, you know, of endocrinologists, of neurosurgeons, of neuropathologists, of neuro ophthalmology, working together on these patients. And we’ve been able to do that, very well. We hold a clinic together with endocrine that sees these patients. We have a monthly pituitary conference, which is both educational and involves clinical decision-making. So everybody’s very deeply involved. We’ve got a neuropathologist by the name of Dr. Betty Kleinschmidt-DeMasters, who is probably one of the top pituitary pathologists in the country. We’re just we’re also getting our psychology psychiatry department involved in the care of these patients. Obviously, as you know, patients with both Cushing’s disease and acromegaly for that matter, have a lot of emotional difficulties. So I think that is an important part.
How did you get involved with the PNA?
Mr. Robert Knutzen and I first met, probably in the 1990s, so, so quite a while ago, when I became involved in the group, back when it was called the PTNA – Pituitary Tumor Network Association. The PNA gets good medical information on the internet and social media, which can often very difficult to find. I respect the PNA because I think it’s been very good source of information for patients. It’s reliable. It’s well done. And they also offer support, which I think is terrific. So I think it’s a very credible organization that is a real benefit to patients. Treatment of patients with pituitary region tumors has been a large part of my practice for over 35 years. During this time, I have strived to always offer the best care possible, whether surgical, medical or a combination of both. Over the years, I have worked closely with the PNA and know firsthand that this is their goal as well. With like-minded visions, I am honored to be a member of PNA’s Medical Advisory Board and to work towards this common goal.
What would you like people to know about the primary focus of your work, or research?
At the university there’s two people on the endocrine side who really do the bulk of the primary research. We’ve been able to maintain a tissue bank of pituitary tumors, which is now probably about 1000 specimens. We try to save a piece of tissue from our cases and store them in the tissue bank for research purposes. And our research has been focused a lot around acromegaly, growth hormone-secreting tumors, the difference between densely granulated and sparsely granulated, and their response to therapy, which is significantly different between the two. And then also looking at corticotrope adenomas and trying to kind of decide what factors influence their recurrence rate and their invasiveness. In malignant tumors of the brain, our clinical and research work has centered on novel uses of immunotherapy for treatment of high-grade gliomas. In addition, we are invested in improving the extent of resection of these tumors, with minimizing morbidity. For pituitary tumors, we have had a particular clinical and research interest in patients with acromegaly and Cushing’s disease. This is a group of patients, in particular, require a multi-disciplinary team approach to treatment, and we are fortunate to have assembled such a team in Colorado. Currently I have personally done over 3,000 transsphenoidal procedures, working closely with our endocrinology associates.
What would you consider to be the future of the field?
I’m a surgeon, and we’ve transitioned a little bit on the surgery side, going more from microscopic to endoscopic, but I think that the future is really the ability to treat these tumors like we do prolactinomas with medical management that would be amazing. The medications that we have available for us to treat both growth hormone and ACTH-secreting tumors has gotten better and better. No question about it. The future of our field also lies in being able to recognize these lesions earlier
and provide treatment before the development of neurologic and/or endocrinologic
dysfunction.
What should patients know more about? What deserves more awareness?
It’s critically important to have a multi-disciplinary team. I see over and over again where, sure, you can go to a surgeon and they can operate on a pituitary tumor, but there’s the follow up and the multidisciplinary team, I don’t think you get the best care or the best outcome. So I think that’s probably the most critically important factor. The other is, speaking as a surgeon, I think you’re certainly best off going to a center where the surgeons have an experience with pituitary tumors. I think there was a recent study from about four or five years ago that a majority of pituitary tumors are done by neurosurgeons who do maybe less than 10 a year. And I think that’s probably not the best case scenario.
What would you like to convey about yourself to your patients?
Treatment of pituitary tumors is unique to each individual and I approach each patient in this manner. Treatment of these lesions has been a life-long passion of mine and we always strive to do the best job we can for each individual.
PNA Highlights October 2024
“Your body holds deep wisdom. Trust in it. Learn from it. Nourish it. Watch your life transform and be healthy.”
– Bella Bleue
PNA Spotlight: Dr. Yuval Eisenberg
This month the PNA Spotlight shines on Dr. Yuval Eisenberg. Dr. Eisenberg graduated from Rush Medical College at Rush University Medical Center in 2009. He works in Chicago, IL and two other locations and specializes in internal medicine as well as endocrinology, diabetes & metabolism. Dr. Eisenberg is also affiliated with the University of Illinois Hospital Health & Science Center. He was kind enough to answer some of our questions:
What inspired you to choose your career path?
My career path was guided by my interaction with patients and my mentors. The highlight of my medical school training was helping to diagnose a young man suffering from multiple endocrine neoplasia type 1 (MEN1), a rare genetic disorder causing multiple tumors, including a pituitary adenoma. Listening to his concerns and thinking outside the box, I helped provide him with the correct diagnosis and treatment plan – and started my journey into endocrinology. I have been fortunate to work with excellent clinician-educators in my career. Learning about and observing the care of patients with endocrine-related problems was fascinating and rewarding. The farther I got in my training, the more I realized that endocrinology was my passion and that patients with pituitary disorders would be my sub-focus. Patients with pituitary disease are a unique population who are in need of education, support and reassurance at diagnosis – and they often require long-term follow-up. This allows for time to develop a bond of trust; an aspect of medical practice I thoroughly enjoy.
Safeguarding the nose during pituitary tumor surgery
Pituitary tumors are typically removed through the nose during endoscopic transnasal transsphenoidal surgery. Although minimally invasive, that approach requires expertise to minimize surgical trauma to the nose. Fortunately, surgeons are using new techniques that help safeguard the nose and maximize patients’ quality of life after surgery.
“The tendency now is to be less invasive in the approach through the nose,” explains Dr. Carlos D. Pinheiro Neto, a Mayo Clinic ENT/head and neck surgeon. “A very aggressive approach can cause chronic nasal crusting and infections, scabbing, decreased sense of smell and taste, and changes in the nose’s appearance.”
In endoscopic transnasal transsphenoidal surgery, a small surgical camera and surgical instruments are placed through the nostrils to access the tumor through the sinuses. Mayo Clinic was among the first institutions to extensively research the approach. As initially developed, the procedure involved extensive nasal resection.
“The idea was to create a maximum opening of the sinuses to allow neurosurgeons to reach and remove the tumor from the skull base,” Dr. Pinheiro Neto says. “The nasal physiology and sinus symptoms after the surgery were not a priority — the nose was just a corridor to the tumor.”
Now, Dr. Pinheiro Neto is pioneering surgical techniques that minimize resection of the nasal and sinus structures. One involves leaving intact the middle turbinate, which plays important roles in nasal airflow, warming and filtering air to the lungs, and smelling. Another is using a nasal-floor graft to provide a seal between the nose and brain after tumor removal. The standard procedure when cerebrospinal fluid leaks during surgery involves a nasal septal flap created from the septum — the tissue that separates the nostrils’ two airways.
“Nasal graft is much better for patients. It avoids the exposure of the nasal septum cartilage, so there is less crusting and faster healing,” Dr. Pinheiro-Neto says. “Nasal septal flaps can also cause a structural collapse in the nasal bridge and increase the risk of septal perforations. Since changing our paradigm from nasal septal flap for pituitary surgery, our leak rate is 0.1%.”
The new techniques are based on research conducted in Mayo Clinic’s anatomy laboratory. Those lessons are translated to the operating room, where ENT/head and neck surgeons routinely work alongside neurosurgeons to remove pituitary tumors.
“That research has allowed us to achieve the same level of tumor resection and treatment outcomes, but with fewer complications,” Dr. Pinheiro-Nato says. “With time and experience, we have realized it’s possible to preserve most of the nose and still get good space in the back of the sinus for tumor removal.
“This is about improving patients’ quality of life,” Dr. Pinheiro-Neto says. “They can have a nasal procedure but after a few weeks of healing, the nose and nasal physiology, and the sinuses, are as good as ever before.”
Stanford Hosts Pituitary Patient Education Day
Stanford University invites the public to their free pituitary patient education day, to be held both in-person and via zoom on Saturday November 9th, 2024. The event will run from 8am-5pm and will take place in the Assembly Hall at Stanford Hospital.
The course co-directors include neurosurgeon Juan C. Fernandez-Miranda, MD (a longtime member of the PNA), and endocrinologist Julia Chang, MD. Topics to be discussed include the function of the pituitary gland, endonasal endoscopic surgery, cavernous sinus surgery, radiotherapy, Cushing’s, acromegaly, prolactinoma and more.
Count on your Xeris CareConnection™ Team for unparalleled Cushing’s Support
Cushing’s can be challenging, but there is support so patients can feel like themselves again. The main goal of treating Cushing’s is to get cortisol levels back to normal. This Pituitary Awareness Month, Xeris Pharmaceuticals® is highlighting the importance of one-on-one support for patients living with Cushing’s Syndrome and support for HCPs treating Cushing’s Syndrome.
Sign up to get dedicated support:
Patients: Sign up for support | Recorlev® (levoketoconazole)
HCP’s: Connect with Xeris support | RECORLEV® (levoketoconazole)
Have more questions? Call for more support at 1-844-444-RCLV (7258)
Copyright © 2024 Pituitary Network Association All rights reserved.
Disclaimer: PNA does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical expertise. In all cases, PNA recommends that you consult your own physician regarding any course of treatment or medication.
Our mailing address is:
Pituitary Network Association
P.O. Box 1958
Thousand Oaks, CA 91358
(805) 499-9973 Phone - (805) 480-0633 Fax
Email [email protected]
You are receiving this Newsletter because you have shown interest in receiving information about our activities.
If you do not want to receive any more emails from PNA, Unsubscribe.
News Articles October 2024
New acromegaly drug on the horizon
A new drug for treatment and long-term maintenance therapy for acromegaly is now on the horizon. Crinetics Pharmaceuticals recently submitted its first new drug application (NDA) to the U.S. Food and Drug Administration for paltusotine, which is a once-daily oral selectively-targeted somatostatin receptor type 2 nonpeptide agonist.
Crinetics says researchers used data from from 18 clinical trials in the application, including two Phase 3 trials that evaluated paltusotine for acromegaly in medically untreated and treated patients. Patients tolerated the treatment well, the medication achieved biochemical control by maintaining IGF-1 levels and improved patients’ symptoms compared to placebo. The company says it expects to hear back from the FDA by December.
Paltusotine, is the first drug of its type to complete Phase 3 clinical development for acromegaly and is now in Phase 2 clinical development for carcinoid syndrome associated with neuroendocrine tumors. Read the company’s press release here.
Can machine learning to predict hormone deficiency after pituitary surgery?
A study featured on Nature.com used machine learning algorithms to predict whether patients would develop arginine vasopressin deficiency after transsphenoidal surgery to remove a pituitary adenoma. Read more here: https://www.nature.com/articles/s41598-024-72486-w
Pituitary apoplexy strikes groom on wedding day
An article in People.com tells the story of a groom in England who had to leave his wedding reception early due to a severe headache – one that turned out to be a hemorrhaging pituitary tumor. Read more here: https://people.com/groom-migraine-wedding-day-tumor-popped-8718083
Researchers try to make synthetic oxytocin for pain relief
An article in the Focus.news looks at efforts to replicate the hormone oxytocin in the lab – in an effort to develop a painkiller that would be safer than opioids. Read more here: https://www.thefocus.news/lifestyle/scientists-are-hoping-to-replicate-the-cuddle-hormone-for-healthy-long-term-pain-relief/
PNA Spotlight: Dr. Leena Shahla
This month the PNA Spotlight focuses on endocrinologist Dr. Leena Shahla, director of the Duke Pituitary Center, part of Duke Health in Durham, North Carolina. The program is listed by the PNA as a center of pituitary excellence. Dr. Shahla graduated medical school at Al-Baath University (in Homs, Syria), did her residency in internal medicine at St. Joseph’s at New York Medical College, and completed a fellowship in endocrinology at the University of Massachusetts Medical School. Her pituitary focus has grown significantly over the years. She initiated the pituitary tumor board at the University of Florida, Jacksonville, and later built the pituitary clinic at the University of Arizona, Phoenix. She arrived at Duke this past July. Dr. Shahla was kind enough to answer a few questions from the PNA. Below is the conversation.
Please tell us about your work at Duke.
At Duke, I am the neuroendocrinologist and medical director of Duke Pituitary Center. Our multidisciplinary team includes specialists in neurosurgery, neuro-ophthalmology, ENTs, neuro-oncology, and neuro-radiology. We run a multi-disciplinary clinic. When patients visit for evaluation, they often start with visual field testing, followed by appointments with me and one of the neurosurgeons, all in one place. We all collaborate closely behind the scenes to make the best plan for each patient.
What inspired you to choose this career path?
My interest in hormones and their role in regulating various physiological systems led me to specialize in endocrinology. And then, as I realized the significant impact of the pituitary on the endocrine system, I found the challenge of diagnosing and treating pituitary conditions fascinating, much like solving a complex puzzle. So ultimately, that inspired me to specialize in pituitary disorders.
What is the primary focus of your work or research?
We’re working on a study on the link between hypogonadism and prolactinoma. We are also going to be looking into early diagnosis of Cushing’s and acromegaly.
How has endocrinology evolved since you got into it, and where do you think it’s going?
Medicine today is more advanced than ever. Especially in my specialty, there have been advancements in pituitary-focused diagnostic tests and new treatments continue to emerge. This progress is especially beneficial for complex cases that previously had limited treatment options. The field is moving forward with studies and clinical trials underway. Cushing’s and acromegaly are rare diseases and often leave patients suffering for years before diagnosis. However, with greater public awareness and improved testing, patients are being diagnosed earlier.
What should patients know about endocrinology? What needs more awareness?
Cushing’s Syndrome and acromegaly deserve more awareness, as many patients go undiagnosed for long periods. Not all cases present with obvious symptoms making it crucial for primary care physicians and other providers to recognize early signs. When patients are diagnosed in advanced stages, treatment becomes more challenging. Raising awareness can guide physicians to screen for Cushing’s syndrome and acromegaly or refer patients to endocrinology. This proactive approach can help us identify, diagnose, and treat patients sooner.
What are some of the signs that doctors and patients should be looking for, for acromegaly and Cushing’s?
Both patients and providers should be aware of certain signs and symptoms, although they can be subtle or develop gradually.
For Cushing’s, signs could be unexplained weight gain, easy bruising, muscle weakness, mood changes (anxiety, depression, irritability), uncontrolled diabetes, or hypertension.
For acromegaly, some of signs are facial changes, hand and feet growth (increased ring or shoe size), joint pain and swelling, tingling in hands, jaw changes or pain, and widening of spaces between the teeth.
Early detection of these signs combined with diagnostic tests can help lead to timely intervention and management
What would you like to convey about yourself to your patients?
I believe that the doctor-patient relationship is built on communication, empathy, and trust. I am thorough in my approach, and when I meet patients, especially for the first time, I prioritize listening to their concerns, making sure I answer their questions and explain their conditions clearly so they understand. And I involve them actively in the decision-making process.
Empathy is essential, especially during the diagnosis and early stages of treatment before patients start feeling better. They need support, hand-holding, and understanding because they are often struggling physically, mentally, and emotionally. It is important to listen to their concerns patiently and guide them without getting frustrated. While we may not be able to cure everything, we can keep the disease very well-controlled, allowing them to feel better and supported.
What made you want to get involved with the PNA?
I always wanted to be involved with the PNA because pituitary disorders are not that common, and this group provides invaluable support to patients. My goal is to contribute as much as possible to help patients and community providers recognize the disease early. Patients must be referred to centers with the right resources for diagnosis and treatment. At the end of the day, we all care deeply about our patients’ well-being.
PNA Highlights October 2024
“Your body holds deep wisdom. Trust in it. Learn from it. Nourish it. Watch your life transform and be healthy.”
– Bella Bleue
PNA Spotlight: Dr. Yuval Eisenberg
This month the PNA Spotlight shines on Dr. Yuval Eisenberg. Dr. Eisenberg graduated from Rush Medical College at Rush University Medical Center in 2009. He works in Chicago, IL and two other locations and specializes in internal medicine as well as endocrinology, diabetes & metabolism. Dr. Eisenberg is also affiliated with the University of Illinois Hospital Health & Science Center. He was kind enough to answer some of our questions:
What inspired you to choose your career path?
My career path was guided by my interaction with patients and my mentors. The highlight of my medical school training was helping to diagnose a young man suffering from multiple endocrine neoplasia type 1 (MEN1), a rare genetic disorder causing multiple tumors, including a pituitary adenoma. Listening to his concerns and thinking outside the box, I helped provide him with the correct diagnosis and treatment plan – and started my journey into endocrinology. I have been fortunate to work with excellent clinician-educators in my career. Learning about and observing the care of patients with endocrine-related problems was fascinating and rewarding. The farther I got in my training, the more I realized that endocrinology was my passion and that patients with pituitary disorders would be my sub-focus. Patients with pituitary disease are a unique population who are in need of education, support and reassurance at diagnosis – and they often require long-term follow-up. This allows for time to develop a bond of trust; an aspect of medical practice I thoroughly enjoy.
Safeguarding the nose during pituitary tumor surgery
Pituitary tumors are typically removed through the nose during endoscopic transnasal transsphenoidal surgery. Although minimally invasive, that approach requires expertise to minimize surgical trauma to the nose. Fortunately, surgeons are using new techniques that help safeguard the nose and maximize patients’ quality of life after surgery.
“The tendency now is to be less invasive in the approach through the nose,” explains Dr. Carlos D. Pinheiro Neto, a Mayo Clinic ENT/head and neck surgeon. “A very aggressive approach can cause chronic nasal crusting and infections, scabbing, decreased sense of smell and taste, and changes in the nose’s appearance.”
In endoscopic transnasal transsphenoidal surgery, a small surgical camera and surgical instruments are placed through the nostrils to access the tumor through the sinuses. Mayo Clinic was among the first institutions to extensively research the approach. As initially developed, the procedure involved extensive nasal resection.
“The idea was to create a maximum opening of the sinuses to allow neurosurgeons to reach and remove the tumor from the skull base,” Dr. Pinheiro Neto says. “The nasal physiology and sinus symptoms after the surgery were not a priority — the nose was just a corridor to the tumor.”
Now, Dr. Pinheiro Neto is pioneering surgical techniques that minimize resection of the nasal and sinus structures. One involves leaving intact the middle turbinate, which plays important roles in nasal airflow, warming and filtering air to the lungs, and smelling. Another is using a nasal-floor graft to provide a seal between the nose and brain after tumor removal. The standard procedure when cerebrospinal fluid leaks during surgery involves a nasal septal flap created from the septum — the tissue that separates the nostrils’ two airways.
“Nasal graft is much better for patients. It avoids the exposure of the nasal septum cartilage, so there is less crusting and faster healing,” Dr. Pinheiro-Neto says. “Nasal septal flaps can also cause a structural collapse in the nasal bridge and increase the risk of septal perforations. Since changing our paradigm from nasal septal flap for pituitary surgery, our leak rate is 0.1%.”
The new techniques are based on research conducted in Mayo Clinic’s anatomy laboratory. Those lessons are translated to the operating room, where ENT/head and neck surgeons routinely work alongside neurosurgeons to remove pituitary tumors.
“That research has allowed us to achieve the same level of tumor resection and treatment outcomes, but with fewer complications,” Dr. Pinheiro-Nato says. “With time and experience, we have realized it’s possible to preserve most of the nose and still get good space in the back of the sinus for tumor removal.
“This is about improving patients’ quality of life,” Dr. Pinheiro-Neto says. “They can have a nasal procedure but after a few weeks of healing, the nose and nasal physiology, and the sinuses, are as good as ever before.”
Stanford Hosts Pituitary Patient Education Day
Stanford University invites the public to their free pituitary patient education day, to be held both in-person and via zoom on Saturday November 9th, 2024. The event will run from 8am-5pm and will take place in the Assembly Hall at Stanford Hospital.
The course co-directors include neurosurgeon Juan C. Fernandez-Miranda, MD (a longtime member of the PNA), and endocrinologist Julia Chang, MD. Topics to be discussed include the function of the pituitary gland, endonasal endoscopic surgery, cavernous sinus surgery, radiotherapy, Cushing’s, acromegaly, prolactinoma and more.
Count on your Xeris CareConnection™ Team for unparalleled Cushing’s Support
Cushing’s can be challenging, but there is support so patients can feel like themselves again. The main goal of treating Cushing’s is to get cortisol levels back to normal. This Pituitary Awareness Month, Xeris Pharmaceuticals® is highlighting the importance of one-on-one support for patients living with Cushing’s Syndrome and support for HCPs treating Cushing’s Syndrome.
Sign up to get dedicated support:
Patients: Sign up for support | Recorlev® (levoketoconazole)
HCP’s: Connect with Xeris support | RECORLEV® (levoketoconazole)
Have more questions? Call for more support at 1-844-444-RCLV (7258)
Copyright © 2024 Pituitary Network Association All rights reserved.
Disclaimer: PNA does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical expertise. In all cases, PNA recommends that you consult your own physician regarding any course of treatment or medication.
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October 2024 Research Articles
Pituitary Tumors
Duru M, Demir AN, Oz A, Kargin OA, Altunc AT, Demirel O, Arslan S, Kizilkilic O, Poyraz BC, Kadioglu P.J Endocrinol Invest. 2024 Oct 3. doi: 10.1007/s40618-024-02442-y. Online ahead of print.
Xu L, Lei Z, Wang Q, Jiang Q, Xing B, Li X, Guo X, Wang Z, Li S, Huang Y, Lei T.Antioxid Redox Signal. 2024 Oct 3. doi: 10.1089/ars.2024.0611. Online ahead of print.
Beyond Epistaxis: A Rare Case of Ectopic Sinonasal Adamantinomatous Craniopharyngioma.
Selva Kumaran K, Shamsudin NS, Dalip Singh HS, Devesahayam PR.Cureus. 2024 Sep 1;16(9):e68357. doi: 10.7759/cureus.68357. eCollection 2024 Sep.
Posterior pituitary tumors and other rare entities involving the pituitary gland.
Roncaroli F, Giannini C.Brain Pathol. 2024 Sep 30:e13307. doi: 10.1111/bpa.13307. Online ahead of print.PMID: 39350562 Review.
Pituitary Apoplexy in Pregnancy: Neonatal Implications.
Megan Y, Melissa S.Neoreviews. 2024 Oct 1;25(10):e660-e663. doi: 10.1542/neo.25-10-e660.
Zaher M, Kolmetzky DW, Al-Atrache Z, Vimawala S, Kolia NR, Godil SS.J Neurosurg Case Lessons. 2024 Sep 30;8(14):CASE24326. doi: 10.3171/CASE24326. Print 2024 Sep 30.
Zhang L, Yan S, Xie SK, Wei YT, Liu HP, Li Y, Wu HB, Wang HL, Xu PF.Endocr Connect. 2024 Sep 1:EC-24-0378. doi: 10.1530/EC-24-0378. Online ahead of print.
Acromegaly
Aliyeva T, Muniz J, Soares GM, Firdausa S, Mirza L.Pituitary. 2024 Oct 1. doi: 10.1007/s11102-024-01461-5. Online ahead of print.
Cushing’s
Braun LT, Vogel F, Nowak E, Rubinstein G, Zopp S, Ritzel K, Beuschlein F, Reincke M.Eur J Endocrinol. 2024 Oct 1:lvae127. doi: 10.1093/ejendo/lvae127. Online ahead of print.
Pituitary Surgery
De Nigris Vasconcellos F, Vilela MAD, Torrico FG, Scalise MA, Vargas VPS, Mendieta CD, Pichardo-Rojas P, Rosi MEA, Fleury LT, de Brito Rebelo ND, Benjamin C, Sheehan JP.Acta Neurochir (Wien). 2024 Oct 2;166(1):392. doi: 10.1007/s00701-024-06296-4.PMID: 39356336 Review.
Editor’s note: Dr. Sheehan is a member of the PNA.
Hormonal Health
Shimon I.Rev Endocr Metab Disord. 2024 Oct 2. doi: 10.1007/s11154-024-09902-z. Online ahead of print.PMID: 39356415 Review.
Saadeh NA, Obeidat M, Shboul M.Appl Clin Genet. 2024 Sep 26;17:143-149. doi: 10.2147/TACG.S466919. eCollection 2024.
PNA Spotlight: Dr. Yuval Eisenberg
This month the PNA Spotlight shines on Dr. Yuval Eisenberg. Dr. Eisenberg graduated from Rush Medical College at Rush University Medical Center in 2009. He works in Chicago, IL and two other locations and specializes in internal medicine as well as endocrinology, diabetes & metabolism. Dr. Eisenberg is also affiliated with the University of Illinois Hospital Health & Science Center. He was kind enough to answer some of our questions:
What inspired you to choose your career path?
My career path was guided by my interaction with patients and by my mentors. The highlight of my medical school training was helping to diagnose a young man suffering from multiple endocrine neoplasia type 1 (MEN1), a rare genetic disorder causing multiple tumors, including a pituitary adenoma. Listening to his concerns and thinking outside the box, I helped provide him with the correct diagnosis and treatment plan – and started my journey into endocrinology. I have been fortunate to work with excellent clinician-educators in my career. Learning about and observing the care of patients with endocrine-related problems was fascinating and rewarding. The farther I got in my training, the more I realized that endocrinology was my passion and that patients with pituitary disorders would be my sub-focus. Patients with pituitary disease are a unique population who are in need of education, support and reassurance at diagnosis – and they often require long-term follow-up. This allows for time to develop a bond of trust; an aspect of medical practice I thoroughly enjoy.
What is the primary focus of your work/research?
My main focus is my clinical endocrinology practice, and I see a variety of patients, but I have a specialized interest in patients with pituitary disorders. My research interest is in the hormone oxytocin and how it might affect patients with pituitary hormone deficiencies (hypopituitarism).
What do you consider to be the future of your field?
In my opinion, the future is in specialized and individualized expert care when providing for patients with pituitary disorders. Given the rarity of these diseases, patients are best served by providers with interest and experience. Also, the more we know about pituitary tumors and the genetics behind them, the better we will be able to predict patient outcomes and tailor our therapies.
What should patients know about your field/what deserves more recognition/awareness?
My feeling is that patients need to know that they can/should advocate to get the care they deserve from providers with interest and experience in caring for individuals with their condition. They should also utilize the excellent patient-centered resources (like the PNA) to help educate and direct their care.
What would you like to convey about yourself to your patients?
The best part of my job is helping patients (and their families) understand their condition, their prognosis and their options. It’s tremendously rewarding to help someone feel more comfortable with what is often a completely foreign, and sometimes scary sounding group of diseases. I strive to always spend the time and energy needed to make patients feel more at ease with and educated about their disease.
- Why did you get involved with the PNA and what is the extent of your involvement?
Early in my career, I became excited to become more involved. My mentor has also been involved in the PNA for many years and recommended I become involved, as he found it an excellent resource for patients and providers.
Available Now!
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The Pituitary Patient Resource Guide Sixth Edition is now available! Be one of the first to have the most up-to-date information. The Pituitary Patient Resource Guide a one of a kind publication intended as an invaluable source of information not only for patients but also their families, physicians, and all health care providers. It contains information on symptoms, proper testing, how to get a diagnosis, and the treatment options that are available. It also includes Pituitary Network Association's patient resource listings for expert medical care.
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Continuing Education Program
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