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New HH Support Group in Phoenix April 24, 2014

Posted by mvarlan in Uncategorized.
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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

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

Posted by mvarlan in Uncategorized.
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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