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Follow up to Holly’s Story! July 10, 2014

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Learning about another person’s HH journey might help you on yours.

Watch Holly’s recovery since undergoing surgery at Barrow Neurological Institute with Peter Nakaji, MD. She shares her positive outlook on her experience and her future.    

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

Family’s Loved Ones Take Ice Baths to Raise Money for HH Treatment June 26, 2014

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Acts of kindness may often seem too small to make much of a difference, but in actuality can move mountains.  Watch this video of one HH family’s friends & co-workers banding together to help raise money for treatment at the Barrow Hypothalamic Hamartoma Center.

 

 

Regards, Maggie Bobrowitz, RN, MBA

Neuroscience Program Coordinator

Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital

Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

Why Experience Matters June 13, 2014

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Subspecialty programs like the Barrow Hypothalamic Hamartoma Center unite several areas of medical expertise.

The collaboration of these sub-specialty programs provides a sense of encouragement and comfort to those patients seeking a collection of qualified individuals within different specialties in one location. Barrow is one of the few institutions in the country that can offer such comprehensive services to the members in the local community and worldwide.

Through numerous clinical analysis and research studies a great deal of effort is placed on designing a clinical pathway which reflects the practice in the care of patients with HH.

Whether you are seeking a second opinion or primary care for your condition make sure you are engaging a team with a proven strategy. This graphic can help you find your way through the treatment process.

Algorithm fullpage

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

Barrow Neurological Institute on Prime Time! June 5, 2014

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Barrow Neurological Institute was mentioned last week in the series premier of The Night Shift, a new medical drama series on NBC. This show is comparable to Grey’s Anatomy and ER. Barrow is credited in the episode for our surgical innovation during an internal decapitation case.  We have received a lot of national news coverage in the past couple of years about this procedure; and a Phoenix toddler, Micah Andrews, was saved at Barrow and made headlines. Now, it is primetime!

The Night Shift

Transcript: You’re going to need to attach the skull directly to the spine.
What keeps it in place?
A titanium loop. use the wires to secure it to the base of the skull and remove a piece of his rib to fortify it. They’ve had success with the procedure at barrow in phoenix. I observed it at a seminar there last spring. It will work. It’s our best option. 

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

A Compassionate Mother May 30, 2014

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Compassion has been defined as the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering. Many of us feel compelled to help our family and friends when we see them work through challenges in their lives.  There are others who extend this act of kindness to those outside of their inner circle.

A couple of years ago I met a woman who continues to serve people she will never meet.  She is the mother of a young boy who is recovering from his second HH surgery.  Rather than focus on what others can do for her son, she reaches out to families coming to Barrow for treatment and offer her support.

Kathy builds gift bags full of snacks, reading materials, and warm fuzzy slippers for HH patients and their families.  I pass them on to the families to maintain their privacy. The bags aren’t just full of comfort food & other goodies. They send a message of compassion to families who may feel isolated and scared.

We have two patients coming to Barrow next week for the laser thermoablation procedure. Although Kathy’s son is recovering from surgery done just last week, she has already dropped off gift bags for these patients.

Our mission at Barrow includes delivering compassionate, high-quality patient care. Employees who demonstrate compassionate behavior are often featured internally through our recognition programs. If we had a program to recognize family members, Kathy would be at the top of my list!

Kathy doesn’t behave out of a need for recognition or praise.  She simply just cares about others and what they are going through. I’m not going to mention Kathy’s last name or her son’s name in order to maintain her privacy. She wouldn’t want it any other way. J.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

The Role of Magnetoencephalography (MEG) in the Presurgical Evaluation of Epilepsy Patients May 23, 2014

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Barrow Neurological Institute offers continuing education conferences every week that seek to expand knowledge about neurological disorders including epilepsy.

“The Role of Magnetoencephalography in the Presurgical Evaluation of Epilepsy Patients” was presented on March 7, 2014 by Richard Burgess, MD, PhD.

Dr. Burges is the Director of the Magnetoencephalography Laboratory, Head Section of Clinical Neurophysiology at the Cleveland Clinic Epilepsy Center, and the Director of Neurological Computing Program at Cleveland Clinic. Keep in mind this was intended for an audience of medical professionals, so if you don’t understand some of the language used in the talk you can post your questions here.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

Research on the Horizon May 16, 2014

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Has the lack of available information on hypothalamic hamartomas left you frustrated?

Our HH specialists recognize that patients can have a hard time finding information on the treatment, symptoms, and diagnosis of a hypothalamic hamartoma.  That is why we place such a high value on research studies pertaining to various treatments.

Dr. Oliver Oatman of Barrow Neurological Institute at Phoenix Children’s Hospital is taking the lead in studying the effects of HH on the endocrine system before and after treatment. Under the direction of Drs. Padmaja Bollam and Raymond Bunch, we are also investigating the relationship between HH and various psychiatric disorders.

We’d like to hear from you! What are your biggest concerns about behavior, mood or other psychiatric diagnosis as they relate to HH?  If you have been treated at Barrow and have experienced psychiatric disturbances before or after treatment, your feedback is invaluable. If you were treated at another facility and would like to be included in this cohort of patients, please contact me directly.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

 

St. Joseph’s Medical Group Gets a New Name May 6, 2014

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Some of our local HH patients have made St. Joseph’s Hospital their medical home and see a multitude of specialists for their care. This notice is to inform this group of patients about a physician practice name change  to avoid confusion about their doctors.

St. Joseph’s Medical Group is changing its name to Dignity Health Medical Group. The new name better reflects the group of employed physicians who serve Dignity Health’s Arizona health care organizations, which include St. Joseph’s Hospital and Medical Center, Chandler Regional Medical Center, and Mercy Gilbert Medical Center. The Dignity Health Medical Group employs more than 250 providers and 400 support staff covering a wide range of specialties and more than 70 subspecialties.

Please comment any questions to this blog or directly to my email.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

 

New HH Support Group in Phoenix April 24, 2014

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The Hypothalamic Hamartoma Center at Barrow is partnering with Hope for Hypothalamic Hamartoma to establish a local support group in Arizona. We will begin hosting social gatherings at St. Joseph’s Hospital & Phoenix Children’s Hospital to offer a centralized location and have convenient access to the HH experts.

The get-togethers will be fashioned around the needs of those affected by HH in Arizona. That means hosting formal or informal events as requested by the attendees. From time to time we will invite our HH experts to talk about research on the horizon or other compelling HH topics as desired by the group. Please contact me for more information.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

Does Having a VNS Prevent Me From Having The Laser Thermoablation (LTA) Procedure? April 11, 2014

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I have had many patients inquire about this procedure who currently have a Vagal Nerve Stimulator (VNS) in place. There have been concerns about the safety of this procedure due to metal in the electrodes.

The short answer is no. Having a VNS doesn’t mean you are not a candidate for LTA. It does depend on whether the generator is still in place and if not, how it was disconnected from the electrodes.

  • If the full system, including the generator and leads (electrodes), is in place and the system is turned on the only step we need to take is turn the generator off for the surgery and any subsequent MRI scans. The generator can be turned back on after surgery.
  •  If the full system, including the generator and leads (electrodes), is in place and the system is turned off we do not need to do anything except notify the MRI department of the device. Some radiology departments will only perform the 1.5 Tesla MRI scan rather than the 3 Tesla on patients with this device in place. The 3 Tesla is a stronger magnet.
  • If the generator has been removed and only the leads (electrodes) remain in place, documentation must be available that describes how the generator was removed. If the generator was disconnected from the leads the treatment can proceed. If the leads were cut the LTA cannot be performed. In this situation, heating of the lead may cause damage to the vagus nerve and surrounding tissue.

The take home message here is to obtain documentation from your surgeon when the VNS is initially placed in order to identify the materials used as well as when the generator is removed. Having this information in writing will save you time and stress if you pursue additional treatment.

 

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

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