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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

M-O-O-Ving Thru’ The Mud with Landon May 17, 2014 March 17, 2014

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This fun mud run – in it’s third year – for ages 4 – 14yrs benefits Hope for HH and is an awesome good time!

Support research for treatment of hypothalamic hamartoma!

For more information click on the link below.

http://www.mudwithlandon.com/

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 Great Kindness Challenge February 27, 2014

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Twenty-nine Arizona schools are now participating in the Great Kindness Challenge, a global program that inspires students to make a lifelong commitment to service and kindness. Dignity Health is cosponsoring the event, which encourages classes and schoolchildren to work together to perform 50 kind deeds that create positive change.

To learn more, visit http://www.greatkindnesschallenge.org. Dignity Health has also created a challenge list for employees who would like to participate. If you are interested in taking part, the list is attached. Participants are encouraged to tweet or instagram their kind deeds using #DignityHealthGKC and #hellohumankindness. You can also e-mail them to Kimberly.Lodge@DignityHealth.org.

 

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

Recent Advances in Pediatric Epilepsy February 19, 2014

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Barrow Neurological Institute at Phoenix Children’s Hospital and the Epilepsy Foundation of Arizona invite you to a free conference for parents of children with seizure disorders.

When: Saturday, April 12, 2014 - 8:00am to 12:00pm

Where: Phoenix Children’s Hospital Rosenberg Building – Mel Cohen Conference Center

Free Admission  (Sorry, no respite care provided)

Free Parking

Enter the campus off 20th Street and Cambridge Avenue, two blocks south of Thomas Road. Free parking is available in the Cambridge visitors’ parking garage.

Further Information

Please contact EFAZ, (602) 406-3581 or email info@epilepsyaz.org

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

Getting Better Care – Message from the National Rare Disease Day 2014 Partners February 12, 2014

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 “Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.”

Learn how this event aligns with the mission of Hope for HH in Lisa Soeby’s blog post @ http://hopeforhh.org/blog/2014/02/getting-better-care/ 

 

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

Bret Michaels at Barrett Jackson Auto Auction January 27, 2014

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While some people might think the Barrett-Jackson Car Auction is all about the cars, others say it is about bringing people together.

Musician Bret Michaels was among the enthusiasts at the Barrett-Jackson opening gala.

Michaels came to reconnect with Glen Schallman, who suffers from an inoperable brain tumor. The two met over Christmas when Schallman was in the hospital. To read more and watch the video click here.

Please note that a correction is needed in this reporter’s description of Glenn’s tumor. As he openly discusses, he lives with a Hypothalamic Hamartoma malformation; not an inoperable brain tumor.

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

Hello Human Kindness January 15, 2014

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Sometimes, good health care goes beyond making sure you feel better when you leave the hospital.  Please click on the link below to watch videos that touch upon one or more of the humankindness tenants: listening, empathy, respect, and kindness.

 Hellohumankindness.org 

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

Running for a Rare Disease! January 9, 2014

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Hope for Hypothalamic Hamartomas has been contacted by Genzyme – a major Boston based corporation.

Their employees run the Boston Marathon to raise awareness for rare diseases and they are considering hypothalamic hamartomas as their cause this year.

For event details click on the links below.

 http://runningforrarediseases.org/ 

 http://runningforrarediseases.org/2013/11/10/wanted-passionate-patient-partners/ 

You can also watch the following short video about the program  http://www.youtube.com/watch?v=t7Qh0JfaFr8.

If you are interested in learning more about this opportunity please contact Ilene Miller at (240) 205-4807 or ilenepennmiller@gmail.com.

Thanks all and hope to hear back soon! This would be a huge fundraising and awareness raising opportunity.

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

Lennox-Gastaut Syndrome: A Subset of HH Patients December 18, 2013

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Matthew Troester, DO, leading epileptologist at the Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital, co-authored “Lennox-Gastaut Syndrome Symptomatic to Hypothalamic Hamartoma: Evolution and Long-term Outcome Following Surgery” in Pediatric Neurology.

Lennox-Gastaut syndrome is a type of childhood epilepsy that  can be caused by a hypothalamic hamartoma. As this article points out, children with this syndrome often have a better prognosis when the cause is a hypothalamic hamartoma, but a worse prognosis than HH patients in general. Click here to read the abstract and full article.

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

Parenting My Emotional Child December 5, 2013

Posted by mvarlan in Uncategorized.
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Join us at Phoenix Children’s Hospital on December 7, 2013 for a free conference for parents and caregivers of children with emotional challenges. Learn effective tools for successful parenting. Parenting my Emotional Child – Click for details.

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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