Cushing’s on the Dr. Oz Show!

Posted on December 19, 2012 by MaryO

More than 150 staff members will receive the BRAVO! Team Values in Action Award for their collaborative efforts when The Dr. Oz Show came to videotape an inspirational patient story at Ohio State’s Wexner Medical Center.

Lori Burkhoff (Cushings-Help board member cmondwn), a 34-year-old mother from Long Island, NY, who came to Ohio State seeking a cure for Cushing’s disease, will be featured on The Dr. Oz Show along with Neurosurgeon Daniel Prevedello, MD, and Otolaryngology (ENT) Surgeon Ricardo Carrau, MD.

With only four days notice, staff members at Ohio State’s Wexner Medical Center and James Cancer Hospital and Solove Research Institute collaborated to make this visit a success for all — the patient and The Dr. Oz Show video crew.

Along with Collaboration, the Ohio State team also demonstrated the values of Leadership and of Acting with Integrity and Personal Accountability, as they worked to ensure the patient’s safety while accommodating the video crew.

Staff directly involved with this project spanned a broad spectrum of departments, including Admissions, Ambulatory Surgical Unit, Anesthesiology, Housekeeping, Pre-Op, Operating  Room, PACU/Post-Op/ Recovery, In-patient recovery on 7 East James, Marketing and Strategic Communications, Nutrition Services, Patient Experience, Security, and Media Relations.

Each year, our Media Relations team routinely handles hundreds of media escorts and requests for interviews with our expert staff members. But there was nothing routine about this media request. For starters, TV celebrity Dr. Oz would be on site for the entire shoot, starting at 5:30 a.m. Sept. 17, chronicling Burkhoff’s efforts to be cured of a debilitating disease she has battled since she was a teenager. Media Relations staffers escorted the crew throughout the visit.

Cushing’s disease is caused by the pituitary gland releasing too much adrenocorticotropic hormone (ACTH).  People with Cushing’s disease accumulate an excessive amount of ACTH, and this stimulates the production and release of cortisol, which is a stress hormone. If left untreated, Cushing’s disease can cause severe illness and even death.

In Burkhoff’s case, despite three previous surgeries to remove benign tumors on or near her pituitary gland, the disease had returned with a vengeance, causing her to gain weight and putting her at risk for diabetes, stroke, high blood pressure and heart disease, among other complications.

In an effort to raise awareness about the often-misdiagnosed Cushing’s disease, Burkhoff had contacted The Dr. Oz Show.

In the meantime, she learned about the innovative surgical procedure performed at Ohio State. Burkhoff met with Prevedello, the Ohio State neurosurgeon who works in tandem with ENT surgeon Ricardo Carrau, to perform endoscopic endonasal surgery. This is a minimally invasive neurosurgical technique that gives surgeons access to the base of the skull, intracranial cavity and top of the spine by operating via the nose and paranasal sinuses.

Prevedello is one of only a few neurosurgeons worldwide trained in this approach that leaves no facial incisions or scarring, causes less trauma to the brain and nerves, has fewer side effects and results in quicker recovery times.

Burkhoff and the surgeons agreed to be videotaped “documentary style” — meaning that Dr. Oz wanted to capture everything that happened to Burkhoff leading up to and including her surgery. Cameras were rolling at 6 a.m. when Dr. Oz warmly greeted Burkhoff as she walked through the main lobby doors of Rhodes Hall.

Dr. Oz and his video crew remained with Burkhoff as she was admitted to the hospital and during a pre-op discussion with her surgeons in the Ambulatory Surgical Unit. They were with her during the 2.5-hour surgery in University Hospital OR 16, and they followed her into the Post Anesthesia Care Unit recovery area after surgery. By noon, Dr. Oz had departed and the video crew had called it a “wrap.”

During the surgery, Prevedello removed two benign tumors near the pituitary gland. However, Burkhoff did not respond as well as doctors had hoped.

Within a few days, Prevedello and Carrau decided to schedule an unprecedented fifth surgery on Sept. 22.

Even though Dr. Oz couldn’t make it back for the fifth and final surgery, his video crew arrived at 6 a.m. on a football home-game Saturday. The crew interviewed Burkhoff and the surgeons before the four-hour surgery, and the surgeons again after the operation. This surgery proved successful, and Burkhoff continues to improve.

Prevedello and Carrau, members of Ohio State’s Cranial Base Center, will join Burkhoff on the set of The Dr. Oz Show in New York City to share her inspirational story with an international audience during an episode slated to air on Thursday, December 20, 2012.

 

More information at http://oncampus.osu.edu/pdf/Insight10-18-12.pdf

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Magic Foundation Cushing’s Conference, 2013

Posted on November 30, 2012 by MaryO

Dates:
Friday, April 19, 2013 – Registration and exhibits-4 PM to 9 PM

Saturday, April 20, 2013 – Educational segments

Sunday, April 21, 2013 – Educational Segments

Monday, April 22, 2013 – Departure or visiting sites of Las Vegas

Registration: $155 for members $190 for non-members (includes 1 yr membership)

Registration fee includes: Thursday exhibits and refreshments, Friday continental breakfast, and lunch and Saturday continental breakfast and lunch. An optional dinner will be held on Friday night for $25.00 per person.

For additional attendees in your family there will be no registration fee but a $75 charge for inclusion of the segments and meals. (optional dinner on Friday night not included in the $75 fee)

Accommodations:
Tuscany Suites & Casino (Just off the Las Vegas Strip)

255 East Flamingo Rd

Las Vegas, NV

Guest room costs:

Friday and Saturday $105 per guestroom, single or double occupancy ($117.60 w/tax)

Sunday thru Thursday $65 per guestroom, single or double occupancy ($72.80 w/tax)

Reservations made after March 20, 2013 at noon will be charged the prevailing room rate if accommodations are available. To book your room you must call Tuscany Room Reservations, 877-887-2261 and ask for MAGIC Foundation group rates. You will be required to provide a major credit card for the first night’s room and tax deposit, which will be charged in order to guarantee accommodations.

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Happy Thanksgiving!

Posted on November 22, 2012 by MaryO

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A Quarter of a Century

Posted on November 3, 2012 by MaryO

I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it’s hard to get a diagnosis now – imagine how hard it was over 30 years ago – before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support – no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don’t understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn’t even believe you.

Finally, a doctor believes you…but he’s the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH – close by and free, Montreal – they speak French – and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

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Adrenal Insufficiency – Female Patient found Unconscious with Syringe Nearby

Posted on October 31, 2012 by MaryO

Crew’s misdiagnosis of drug overdose could have cost patient her life

Kimberly Doran | From the October 2012 Issue |

 

A call comes in to 9-1-1 dispatch. “Help” is all that’s spoken before the operator hears the phone hit the floor. The 9-1-1 dispatcher calls back only to get a busy signal. Police and EMS are dispatched for a well-being call.

On arrival, the front door is found to be slightly ajar. The crew knocks, but there’s no reply. They find a young woman  lying on the floor, naked, and in a pool of vomit. A syringe with an unknown substance is on the ground nearby. Suspecting a drug overdose, the EMS crew begins treating the patient for this condition. The patient is unconscious with emesis around her head and face. Her vital signs are blood pressure 60/45, heart rate of 130 bpm and respiratory rate of 10.

The patient shows no signs of waking. The crew clears the airway and administers oxygen. An IV is established, and the patient is readied for transport. As the crew leaves the scene, one of the medics turns to shut the door and sees a vial under a chair. He retrieves it and notes that the label says Solu-Cortef (a glucocorticoid). He bags it for the emergency department (ED). Following his instinct, he looks around the area for medications and finds two bottles. One is labeled dexamethosone and the other is labeled fludrocortisone. He takes his findings and rushes out the door into the awaiting ambulance. During transport, the patient continues to deteriorate.

The medic administers 0.5 mg of narcan and a 500mL bolus of normal saline with no response. He radios ahead to let the hospital know that they’re en route. Now questioning the original diagnosis of drug overdose, he reports the medications he found on the scene in hopes it will help the receiving physician determine the cause of the patient’s condition.

Arrival at the ED
On arrival to the ED, the medic hands over the loaded syringe containing 2mL of unidentified solution, as well as the empty vial of Solu-Cortef and the bottles of dexamethosone and fludrocortisones.

As the crew arrives at the hospital, the ED physician meets the crew and informs them that he’s familiar with the medications. He says they’re all used for people who have various forms of adrenal insufficiency (AI). The symptoms seen in this patient coincide with life-threatening adrenal crisis. The physician administers 100 mg of Solu-Cortef via IV and within minutes, the patient rouses. In 30 minutes, she can explain what happened in the desperate moments before her crisis.

Adrenal Insufficiency
Adrenal Insufficiency (AI) is a life-threatening in which the body is unable to produce enough cortisol to sustain life. In other words, their adrenal cortex is “asleep.” People suffering from AI take daily cortisol/glucocorticoid steroid replacement because whatever adrenal function is depleted. These patients are glucocorticoid dependent. In times of injury, dehydration, illness or surgery, they require an injection of Solu-Cortef. Solu-Cortef contains both glucocorticoid and mineralocorticoid properties, helping the body to compensate during a stress event.

The adrenal medulla (inside of the adrenal gland) secretes epinephrine and norepinephrine. The adrenal cortex (outer layer of the adrenal gland) secretes cortisol and aldosterone. Cortisol, a glucocorticoid, is often called the “stress” hormone. One of cortisol’s functions is elevating blood glucose levels in times of stress. It also functions as a mediator for several inflammatory pathways.

Absence of cortisol can result in hypotension, hypoglycemia and death. Aldosterone, a mineralocorticoid, is responsible for the regulation of sodium and water. Absence of aldosterone can result in hypotension and electrolyte imbalance. AI in the prehospital setting may be difficult to recognize in the absence of a good history, including medications, to point providers in the cause of the problem. Two life-threatening conditions associated with AI include hypotension and hypoglycemia.

If not managed, these two conditions are life threatening. Prehospital treatment should include management of the patient’s airway, vascular access and fluid resuscitation. If blood glucose levels are low, the patient should receive dextrose per local protocol. It’s important to complete a thorough physical assessment and obtain a complete patient history before treating patients with this condition. Providers may confuse patients having an adrenal crisis with drug overdose patients because of their similar symptoms. Although AI is rare, it should still be considered as a potential diagnosis.

Authors’ note: Parts of the above case are taken from a true story. However, the difference is that there was no syringe on the floor, no vial under the chair and no one found the medications. The patient was treated with charcoal and diagnosed as a drug-overdose patient. She likely would have died, but her mother charged into the ED and expressed the need for Solu-Cortef. Security was called, but luckily someone listened, researched and called the patient’s treating physician. The patient was treated and released. 

From Journal of Emergency Medical Services

 

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