jump to navigation

What Does Stereotactic Mean? October 23, 2014

Posted by mvarlan in Uncategorized.
comments closed

A patient earlier this week mentioned that her surgeon recommended stereotactic surgery. I couldn’t be certain which treatment he was actually referring to. I thought this would be a good time to clarify some medical terminology.

The specialists at Barrow Neurological Institute offer stereotactic procedures for HH including biopsy, radiotherapy (Gamma Knife), and laser thermoablation. Because physicians often use acronyms, abbreviations, and medical jargon, patients are often confused about what treatment is actually being recommended.

Stereotactic surgery or stereotaxy is a minimally invasive form of surgical intervention that makes use of a 3-dimensional coordinate system to locate small targets inside the body and to perform on them some action such as ablation, biopsy, lesion, injection, stimulation, implantation, radiosurgery, etc. Basically, stereotactic refers to an approach to treatment rather than the type of treatment.  It requires special equipment and physicians with expertise in this area.

Often referred to as stereotactic radiosurgery, Gamma Knife (GK) treatment can be used to treat benign tumors (such as HH), malignant tumors, vascular abnormalities, and functional disorders such as trigeminal neuralgia. It manages these conditions noninvasively, allowing patients to go home the same day as treatment without the pain and risk of complications associated with traditional surgery.

Laser generated stereotactic thermoablation (LTA) allows surgeons to place a laser probe into the HH lesion to administer heat to that tissue. This is performed using intraoperative MRI imaging, which allows the medical team to visualize the administration of heat in real time. Although we often take a piece of tissue for biopsy during the LTA procedure, we don’t perform stereotactic surgery for the sole purpose of obtaining a biopsy.

In summary, if your surgeon refers to radiosurgery or radiotherapy he is describing radiation. If he talks about thermoablation he is referring to burning the lesion.

I hope this is helpful. We don’t mean to talk in code. Please any questions regarding this topic 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

 

Pediatric Grand Rounds – Barrow @ Phoenix Children’s Hospital October 17, 2014

Posted by mvarlan in Uncategorized.
comments closed

Barrow Neurological Institute offers continuing education conferences that seek to expand knowledge about numerous neurological conditions including hypothalamic hamartoma and epilepsy.

“The Basics of the Electroencephalogram” will be presented Dr. Korwyn Williams, neurology specialist on the HH team. Keep in mind this is intended for an audience of medical professionals and is designated for CME credit. All Barrow and community medical professionals are welcome.

Attend in person or get CME credits wherever it is convenient for you by using “Go To Meeting.”  If you would like to sign in using “Go To Meeting” please contact Sande Hogan at (602) 933-0462.

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

**Patient Conference in Houston Next July** October 7, 2014

Posted by mvarlan in Uncategorized.
comments closed

Hope for Hypothalamic Hamartoma is sponsoring another educational event for patients and families suffering from this condition. Here are the details available at this time. More information as speakers and topics are confirmed.

Official announcement:

It is official! We have a date for our 2015 HH Family Conference! It will be July 10-12th 2015 in Houston, Texas! The conference will include a full day of talks by top doctors on the latest in HH treatment and research! There will also be fun activities and events to allow families and individuals to meet and share! We would love to hear what topics you are interested in learning more about and get a feel for how many families definitely plan on attending! Please post your suggestions and let us know if you are serious about attending. We want to make this event something that we can all get excited about and create memories of Hope and Change!

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 Relentless Effort of One Mother Finds Care for Her Son at Barrow September 25, 2014

Posted by mvarlan in Uncategorized.
comments closed

Deanna didn’t know what was wrong with her son but she knew something was causing him to develop faster than his peers. They live in a remote region in Montana with limited resources, but that didn’t affect her determination to find answers. She was told time after time that nothing was wrong with her son.

Angelo’s primary care physician wasn’t familiar with hypothalamic hamartoma, but after identifying this rare malformation on his MRI scan, he researched medical journals to find the most experienced specialists to treat his patient.  Both Deana and Angelo’s doctor came up against insurance battles and logistical roadblocks but never gave up. Angelo was treated at Barrow by Ruth Bristol, MD, over a month ago and is looking forward to a greater quality of life.

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 HH Team Update August 29, 2014

Posted by mvarlan in Uncategorized.
comments closed

Many patients have asked me why Barrow Neurological Institute (BNI) can be found at St. Joseph’s Hospital & Medical Center (SJH) as well as Phoenix Children’s Hospital (PCH). Here is the reasoning.

 A few years ago the health care system St. Joseph’s Hospital operates under made the decision to transition inpatient pediatric care to Phoenix Children’s in order to concentrate the pediatric specialists at one hospital. Until that time pediatric care was somewhat disjointed as many hospitals offered pediatric care. A deal was struck, and Barrow pediatric physicians transitioned to PCH.

What this means for our HH patients is that the HH team now co-exists at both hospitals. Patients under 18 years of age are discussed at the adult HH conference and treated at Barrow. Our younger patients are reviewed and treated at PCH. Since the transition, our HH team at both hospitals has grown, which has increased our ability to offer greater clinical expertise and expand research opportunities.

8-01-14 HH group-1

Back Row from left: Matthew Troester, DO, Andrew Shetter, MD, John Kerrigan, MD, Peter Nakaji, MD, Ratan Bhardwaj, MD, George Prigatano, PhD

 Front Row from left: Laura Knecht, MD, Oliver Oatman, MD, Maggie Bobrowitz, RN, Ruth Bristol, MD, Laura Lehnhoff, MD,  Padmaja Bollam, MD

Missing are the following physicians: Drs. Randa Jarrar, Korwyn Williams, Raymond Bunch, John Fulton, Donald McClellan, and Erin Prenger.  

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

 

Ice Bucket Challenge for HH? August 29, 2014

Posted by mvarlan in Uncategorized.
comments closed

We have all seen many ice bucket challenges for ALS if not directly participated in them ourselves. If there was anyone unfamiliar with ALS before this internet sensation, I would imagine they are familiar with it now.

Why has the HH community not come up with our own compelling quest to raise awareness? We should take advantage of the enormous potential for exposure the Internet can provide.  The ice bucket challenge has saturated the market so we need to develop a unique campaign. Any suggestions?

Click here to watch an ALS ice bucket challenge from one of our HH patients treated by Peter Nakaji, MD.

 

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

Transitioning to Adult Medical Care August 14, 2014

Posted by mvarlan in Uncategorized.
1 comment so far

Transitioning into an adult model of care is challenging for those with chronic and/or congenital medical conditions. Exploring the unknown world of an adult health care system can be the harsh opposite of the warm and friendly pediatric doctors. Parents are already burdened with the daily challenges and often don’t have anything left to plan for the future.

Our (HH) young adults (18 years of age +) have varying abilities to lead an independent life. The intent of transition programs is to create an atmosphere which fosters their independence and empowers them to take control over their health care.

I am currently working on a pilot program for transitional care at Phoenix Children’s Hospital with Dr. John Kerrigan. I hope to develop a pathway which transitions those with multidisciplinary needs in a manner that interrupts the young adult’s life as little as possible. Adolescence is challenging enough period in one’ s life without the complexities of health care.

Lisa & CJ Soeby are participating in this pilot program, which we hope to wrap up in the next couple of months. If any of you out there have already transitioned (yourself or your child) and would like to share your positive or negative experiences with me I would be happy to include them in my recommendations.

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

 

Medtronic Acquires Visualase July 30, 2014

Posted by mvarlan in Uncategorized.
add a comment

In a statement provided by Bill Hoffman, CEO of Visualase, “The transaction with Medtronic is critical to ensure more patients have access to our beneficial technology. We are proud of the MRI-guided laser ablation technology and other products we have developed and their impact on the well-being of patients.”

The Barrow HH team will continue to work with this company to provide minimally invasive treatment options for our patients as we have done for the last two years. Our team is excited about the possibilities this acquisition can offer.

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

Black Tie Gala – Epilepsy Foundation of Arizona July 24, 2014

Posted by mvarlan in Uncategorized.
add a comment

Another great opportunity to raise awareness and funding for epilepsy research is coming soon!

The annual Black Tie Gala is a highly anticipated social event which bonds a community in support of a great cause.

The Epilepsy Foundation of Arizona has been established as a leader in epilepsy education and continues to strive to provide forward-thinking programs and resources.

Your attendance at the Gala makes a bold statement of your support of the individuals who live with this challenging disorder.

If you are interested in sponsoring the Epilepsy Foundation of Arizona’s Gala, please contact (602) 406-3581, email at info@epilepsyaz.org, or download the form below to complete and send to us.

Regards,

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

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

Posted by mvarlan in Uncategorized.
add a comment

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

Follow

Get every new post delivered to your Inbox.

Join 1,344 other followers