Science Teacher Receives Support After Cushing’s Disease Diagnosis

I find it amazing that it’s newsworthy in this day and age for anyone receiving support after a diagnosis.  Of course, a diagnosed person should be getting support as a matter of course.  If she had cancer, everyone would be all over this.

For Kara Murrow, the most rewarding moments as a teacher come when students learn about animals in the classroom. So it’s difficult for the Bonham Elementary fifth-grade science and social studies teacher to be away from school while she prepares for surgery.

“I enjoy it, and I know my kids enjoy the class and enjoy science because of it,” Murrow said. “With the science club I do after school once a week, the kids get upset when it gets canceled because of meetings. Not having it now is upsetting, too.”

Murrow was diagnosed this month with Cushing’s disease, a condition that develops when a tumor on the pituitary gland causes it to secrete too much adrenocorticotropic hormone. Murrow, who moved to West Texas from Arizona three years ago, said she has received support from Midland ISD employees and others in the local community.

Murrow’s mother, Louise Gonzalez, also appreciates Midlanders’ concerns for her daughter.

“People in Midland have been wonderful, considering how new we are to the area,” Gonzalez said. “The school district sent out the GoFundMe page and there’s been an outpouring of support for that. People at my church always ask me.”

Murrow’s family is collecting donations from the website GoFundMe to cover the costs of medical and travel expenses. Murrow and her husband, Kai, recently spent money on hospital stays connected to their 4-year-old son’s food sensitivities.

“They’ve been paying off those bills and doing OK until this came,” Gonzalez said. “Plus, she’s been going to the doctor about this. Because Cushing’s is so rare, doctors don’t recognize it.”

Murrow was diagnosed with the disease after medical professionals discovered a tumor on her pituitary gland. For six years, she experienced symptoms — including weight gain, dizziness and headaches — but said doctors couldn’t determine the cause. Murrow was thankful when she received an answer.

“It was a huge relief to finally have a diagnosis and know that I wasn’t crazy or making things up,” Murrow said. “It’s weird to be excited about a brain tumor. It’s a relief to know what was happening and that I have a solution.”

Murrow traveled this week to Barrow Neurological Institute in Phoenix, where she’s scheduled to undergo surgery to remove the tumor. Though Murrow said recovery lasts several months, she hopes to return to the classroom next school year.

Jaime White, fourth-grade language arts and social studies teacher at Bonham, said both staff and students miss her presence. She said Murrow expresses concern for her students during her time away.

“She’s worried about how kids will do on the STAAR [State of Texas Assessments of Academic Readiness],” White said. “She doesn’t want them to think she abandoned them. The disease has to take center stage.”

At school, White said she noticed her colleague’s dedication toward helping her students understand science.

“She’s hands-on,” White said. “When it comes to science, she’s always making sure the kids are doing some sort of experiment. She wants to make sure the kids grasp it.”

Murrow teaches students about animals through dissections and presentations. Before she became a teacher nine years ago, she coordinated outreach programs at an Arizona zoo.

When she came to MISD, Murrow saw an opportunity to generate enthusiasm about science. She launched an invite-only science club for fifth-graders who show interest in the subject.

“I started it because there wasn’t really anything,” Murrow said. “They have tutorials for reading and math. There’s not a lot kids can do with science after school. They get science in the younger grades, but the focus is on reading and math. Science is something kids really enjoy.”

Though Murrow is disappointed about not being able to facilitate the club, she recognizes the importance of her upcoming surgery. She’s happy her mother, husband and two children will be in Phoenix for support.

“I hope that it will bring about a sense of relief to all the symptoms I’ve been dealing with and provide a chance for myself and my family to continue along with a full life,” Murrow said.

From http://www.mrt.com/news/local/article/Science-teacher-receives-support-after-11026581.php

What I’m doing for Rare Disease Day

rare disease day

 

Each and every day since 1897,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Today is Rare Disease Day.

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

What You Should Know About Pituitary Tumors

Ask the Experts

Igor Kravets, MD
Endocrinologist, Assistant Professor Division of Endocrinology,
Diabetes and Metabolism
Stony Brook Medicine
Raphael Davis, MD
Neurosurgeon, Professor and Chair Department of Neurosurgery
Co-Director, Stony Brook University Neurosciences Institute

 

Where do pituitary tumors form?
Dr. Kravets: A pituitary tumor is an abnormal growth of cells in the pituitary gland, which is a small, pea-sized organ located in the center of the brain, behind the nose and eyes. The pituitary is a “master gland” of the body; it produces many hormones that control other endocrine glands and certain functions of the body.
Are they mostly benign or malignant?
Dr. Davis: Most pituitary tumors are benign (non-cancerous). However, because of the location of the pituitary gland at the base of the skull, pituitary tumors can cause problems since they grow upward. Eventually some will press against the area where the optic nerves intersect, causing vision problems. They can also cause hormonal imbalance.What causes pituitary tumors?
Dr. Kravets: No one knows for sure what causes pituitary tumors. About one to five percent of pituitary tumors occur within families. Most are not inherited, however there are certain, rare, inherited conditions such as multiple endocrine neoplasia type 1 (MEN 1), that carry a higher risk of pituitary tumors.

What are the different types of pituitary tumors?
Dr. Davis: Adenomas are benign tumors that develop on the pituitary gland behind the eyes. These tumors can change levels in hormone production or cause vision loss. Craniopharyngiomas are benign tumors that develop at the base of the brain where it meets the pituitary gland. They commonly affect children 5 to 10 years of age, but adults can sometimes be affected in their 50s and 60s.

What are the symptoms?
Dr. Kravets: Symptoms vary depending on the type and size of a pituitary tumor but not all pituitary tumors cause symptoms. Many pituitary tumors are not diagnosed until symptoms appear. Some pituitary tumors are found incidentally on brain imaging obtained for a reason unrelated to the pituitary. Certain symptoms may develop when pituitary tumors grow so large that they exert pressure on surrounding structures.

Such symptoms include:
• Changes in vision (particularly loss of peripheral/outer edge vision)
• Headache

Other symptoms are related to either deficiency or excessive production of certain hormones. Common symptoms caused by such hormonal disturbances include:
• Menstrual cycle changes (irregular or lack of menstrual periods
• Erectile dysfunction or loss of sex drive
• Weight changes
• Production of breast milk by a woman who has not given birth
• Accelerated or stunted growth in a child or teenager
• Growth of the hands, feet, forehead and jaw in adults
• Development of a round face, a hump between the shoulders or both

How is a pituitary tumor diagnosed?
Dr. Kravets: An endocrinologist will ask you about the symptoms you are experiencing, and about your personal and family health history. He or she will perform a physical exam and order tests of your blood and urine. A magnetic resonance imaging (MRI) scan or computerized tomography (CT or CAT) scan may also be ordered to obtain detailed images of the brain and the pituitary gland. In rare instances, a biopsy (surgical procedure to remove a small sample of the tumor for examination) is required.

What treatments are available?
Dr. Davis: Treatments may include surgery, radiation therapy or medication. Transsphenoidal surgery is surgery performed through the nose and sphenoid sinus (located in the very back part of the nose, just beneath the base of the brain) to remove a pituitary tumor. It can be performed with an endoscope, microscope or both and is a team effort between neurosurgeons and ear, nose and throat (otolaryngology/ENT) surgeons. Radiation therapy uses high-energy x-rays to kill the tumor cells and is recommended when surgery is not an option, if the pituitary tumor remains, or if the tumor causes symptoms that are not relieved by medicine.

Why choose Stony Brook?
Dr. Kravets: Our Pituitary Care Center provides access to all of the coordinated expert care you need in one location, close to home — which can make the course of your treatment easier. Our team includes specialists from endocrinology, neurosurgery, otolaryngology (ENT), radiation oncology, neuropathology, neuroradiology, neuro-ophthalmology, and patient education and support.

To make an appointment with one of our Pituitary Care Center endocrinologists, call
(631) 444-0580. To make an appointment with one of our Pituitary Care Center neurosurgeons,
call (631) 444-1213. To learn more, visit stonybrookmedicine.edu/pituitary.

All health and health-related information contained in this article is intended to be general and/or educational in nature and should not be used as a substitute for a visit with a healthcare professional for help, diagnosis, guidance, and treatment. The information is intended to offer only general information for individuals to discuss with their healthcare provider. It is not intended to constitute a medical diagnosis or treatment or endorsement of any particular test, treatment, procedure, service, etc. Reliance on information provided is at the user’s risk. Your healthcare provider should be consulted regarding matters concerning the medical condition, treatment, and needs of you and your family. Stony Brook University/SUNY is an affirmative action, equal opportunity educator and employer.

From https://www.stonybrookmedicine.edu/patientcare/pituitarytumors

Cushing’s Syndrome Treatments

Medications, Surgery, and Other Treatments for Cushing’s Syndrome

Written by | Reviewed by Daniel J. Toft MD, PhD

Treatment for Cushing’s syndrome depends on what symptoms you’re experiencing as well as the cause of Cushing’s syndrome.

Cushing’s syndrome is caused by an over-exposure to the hormone cortisol. This excessive hormone exposure can come from a tumor that’s over-producing either cortisol or adrenocorticotropic hormone (ACTH—which stimulates the body to make cortisol). It can also come from taking too many corticosteroid medications over a long period of time; corticosteroids mimic the effect of cortisol in the body.

The goal of treatment is to address the over-exposure. This article walks you through the most common treatments for Cushing’s syndrome.

Gradually decreasing corticosteroid medications: If your doctor has identified that the cause of your Cushing’s syndrome is corticosteroid medications, you may be able to manage your Cushing’s syndrome symptoms by reducing the overall amount of corticosteroids you take.

It’s common for some people with certain health conditions—such as arthritis and asthma—to take corticosteroids to help them manage their symptoms. In these cases, your doctor can prescribe non-corticosteroid medications, which will allow you to reduce—or eliminate—your use of corticosteroids.

It’s important to note that you shouldn’t stop taking corticosteroid medications on your own—suddenly stopping these medications could lead to a drop in cortisol levels—and you need a healthy amount of cortisol. When cortisol levels get too low, it can cause a variety of symptoms, such as muscle weakness, fatigue, weight loss, and low blood pressure, which may be life-threatening.

Instead, your doctor will gradually reduce your dose of corticosteroids to allow your body to resume normal production of cortisol.

If for some reason you cannot stop taking corticosteroids, your doctor will monitor your condition very carefully, frequently checking to make sure your blood glucose levels as well as your bone mass levels are normal. Elevated blood glucose levels and low bone density are signs of Cushing’s syndrome.

Surgery to remove a tumor: If it’s a tumor causing Cushing’s syndrome, your doctor may recommend surgery to remove the tumor. The 2 types of tumors that can cause Cushing’s are pituitary tumors (also called pituitary adenomas) and adrenal tumors. However, other tumors in the body (eg, in the lungs or pancreas) can cause Cushing’s syndrome, too.

Pituitary adenomas are benign (non-cancerous), and most adrenal tumors are as well. However, in rare cases, adrenal tumors can be malignant (cancerous). These tumors are called adrenocortical carcinomas, and it’s important to treat them right away.

Surgery for removing a pituitary tumor is a delicate process. It’s typically performed through the nostril, and your surgeon will use tiny specialized tools. The success, or cure, rate of this procedure is more than 80% when performed by a surgeon with extensive experience. If surgery fails or only produces a temporary cure, surgery can be repeated, often with good results.

If you have surgery to remove an adrenal tumor or tumor in your lungs or pancreas, your surgeon will typically remove it through a standard open surgery (through an incision in your stomach or back) or minimally invasive surgery in which small incisions are made and tiny tools are used.

In some cases of adrenal tumors, surgical removal of the adrenal glands may be necessary.

Radiation therapy for tumors: Sometimes your surgeon can’t remove the entire tumor. If that happens, he or she may recommend radiation therapy—a type of treatment that uses high-energy radiation to shrink tumors and/or destroy cancer cells.

Radiation therapy may also be prescribed if you’re not a candidate for surgery due to various reasons, such as location or size of the tumor. Radiation therapy for Cushing’s syndrome is typically given in small doses over a period of 6 weeks or by a technique called stereotactic radiosurgery or gamma-knife radiation.

Stereotactic radiosurgery is a more precise form of radiation. It targets the tumor without damaging healthy tissue.

With gamma-knife radiation, a large dose of radiation is sent to the tumor, and radiation exposure to the healthy surrounding tissues is minimized. Usually one treatment is needed with this type of radiation.

Medications for Cushing’s syndrome: If surgery and/or radiation aren’t effective, medications can be used to regulate cortisol production in the body. However, for people who have severe Cushing’s syndrome symptoms, sometimes medications are used before surgery and radiation treatment. This can help control excessive cortisol production and reduce risks during surgery.

Examples of medications your doctor may prescribe for Cushing’s syndrome are: aminoglutethimide (eg, Cytadren), ketoconazole (eg, Nizoral), metyrapone (eg, Metopirone), and mitotane (eg, Lysodren). Your doctor will let you know what medication—or combination of medications—is right for you.

You may also need to take medication after surgery to remove a pituitary tumor or adrenal tumor. Your doctor will most likely prescribe a cortisol replacement medication. This medication helps provide the proper amount of cortisol in your body. An example of this type of medication is hydrocortisone (a synthetic form of cortisol).

Experiencing the full effects of the medication can take up to a year or longer. But in most cases and under your doctor’s careful supervision, you can slowly reduce your use of cortisol replacement medications because your body will be able to produce normal cortisol levels again on its own. However, in some cases, people who have surgery to remove a tumor that causes Cushing’s syndrome won’t regain normal adrenal function, and they’ll typically need lifelong replacement therapy.2

Treating Cushing’s Syndrome Conclusion
You may need one treatment or a combination of these treatments to effectively treat your Cushing’s syndrome. Your doctor will let you know what treatments for Cushing’s syndrome you’ll need.

From https://www.endocrineweb.com/conditions/cushings-syndrome/cushings-syndrome-treatments

Interview with a Doctor on Trans-Sphenoidal surgery

Dr. Julius July: Neurosurgeon at the Neuroscience Center of Siloam Hospitals Lippo Village Karawaci 

A SIMPLE AND QUICK WAY TO REMOVE TUMORS VIA SURGERY THROUGH THE NOSTRIL

The mention of the word “surgery” evokes images of lengthy and elaborate procedures that involve delicate acts of cutting, abrading or suturing different parts of the body to treat an injury or disease.

This widely-held perception has led some to develop an irrational fear of surgery–especially if an operation involves a critical organ, such as the heart, or in the case of trans-sphenoidal surgery, a procedure used to remove tumors from the hormone-regulating pituitary gland located at the base of the brain.

Though the procedure has been around in different forms for the past three decades, individuals who may be in dire need of it might fear or avoid it.

To demystify this specific method of surgery, J+ spoke with Julius July, a neurosurgeon at the Neuroscience Center of Siloam Hospitals Lippo Village Karawaci. He has performed hundreds of trans-sphenoidal operations on patients throughout the country since 2008. Below is our interview, edited for length and clarity.

Tell us more about trans-sphenoidal surgery.

The goal is to extract benign tumors of the pituitary gland that are called pituitary adenoma. The pituitary gland controls different secretions of hormones. If there is a tumor and it grows large, one of the consequences could be that a patient goes blind. It can also lead to symptoms manifesting in other parts of the body due to excess hormone production, depending on the type of hormone affected by the tumor.

What does a neurosurgeon do during the procedure?

As neurosurgeons we use an endoscope with a camera attached to it and insert the instrument through the nostril. We go through the right nostril and through the sinus to reach the tumor and remove it. Once that is done, we add a coagulant to prevent bleeding. The operation takes only an hour to 90 minutes to perform and is minimally invasive. People come in and expect the surgery to last five or six hours. They hear “surgery” and fearfully assume that. But modern trans-sphenoidal surgery is simple, only lasting one to two hours.

What’s the prognosis after surgery?

In 80 percent of cases, all it takes is one surgery to remove a tumor. However, some need repeated intervention, while others require radiation. Some tumors want to invade their surroundings. In these cases, the surrounding area is a blood vessel. We can’t totally remove that type of tumor. But such cases are rare. If a patient needs more than two operations, we usually recommend radiation, because who wants to have a lot of operations?

What are the symptoms of pituitary adenoma?

Symptoms depend on whether a tumor affects hormone production or the optic nerve. The principal complaints are related to a patient’s field of vision becoming narrower. If there is a tumor in the pituitary gland area, the eye can’t see too widely. The tumors would press on the optic nerve, which leads to the periphery of your vision getting blurry.

If the tumor affects hormone production, the symptoms depend on the specific type of hormone that the tumor has affected. Different hormones have different roles. Excess prolactin hormones can lead to women–or even men–producing breast milk. If a woman who isn’t pregnant is producing breast milk, they need to be checked. The basic ingredient of milk is calcium. Without treatment, the woman will have porous bone problems. It also leads to reduced libido. If men have an excess of these prolactin hormones, they cannot get erections and will become impotent.

How does these problem develop in the first place?

Mutations lead to the creation of these benign tumors. Some things make mutations easier, such as smoking or exposure to radiation or specific chemicals. It could be anything. You could have eaten tofu and it had formalin or some meatballs with borax. Preventing it obviously requires a healthy lifestyle, but that’s easier said than done.

It’s not just one thing that causes these tumors.

Who does this pituitary tumor affect?

It affects both genders equally, more or less. The risk of pituitary adenoma compared to all other types of brain tumors is 15 percent. Children are also affected, though the condition is statistically much more likely to afflict adults. Of my patients, two in 70 would be children.

How is it diagnosed?

The doctor will check your hormones after a blood test and identify the problem. For example, if the condition affects growth hormones, a person can grow to two meters or more in height, which leads to gigantism. Alternatively, a condition could lead to horizontal growth–a bigger tongue, bigger fingers and changing shoes each month. The tongue can become so big that it causes breathing problems. Growth hormone overproduction is like a factory with the machine working overtime. As a result, a person’s life span can get cut in half. The heart works overtime, they keep growing and they die prematurely.

How many operations do you perform a year?

I’ve been doing these operations since 2008. I handle 60 to 70 such surgeries a year.

Any notable success stories to share?

One patient from Central Java came in blind. I examined him and said that there was no way we could save his vision by removing his tumor. He was crying. He had been blind for a week. But if no action was taken, the tumor would keep growing and would lead him to becoming crippled. At the end, he decided that he still wanted the operation. Surprisingly though, after the operation, he was able to see. Three months later, he was driving and reading newspapers. It was a fascinating case.

From http://www.thejakartapost.com/news/2016/07/30/well-being-trans-sphenoidal-surgery.html

%d bloggers like this: