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Multidisciplinary Approach February 28, 2013

Posted by mvarlan in Uncategorized.
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The diagnosis of Hypothalamic Hamartoma brings clarity to individuals as to why they or their loved ones are exhibiting a variety of seemingly unrelated symptoms. This is why treatment for this condition requires a multidisciplinary approach for diagnosis, treatment and on-going management of lingering symptoms. Click on the link below to view the multidisciplinary team at the Barrow HH Center. Feel free to post any questions to the blog.

Adult Team

Pediatric Team

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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1. Mark Pickering - March 1, 2013

Hello and Congratulations in your ongoing pursuit of treatment for HH.
My baby daughter was diagnosed with HH at the age of 18 months, she has undergone Stereotactic Radiosurgery at a hospital in Sheffield and Manchester – UK.
My wife and I have been told that the HH has completely disappeared – although the extensive medical team cannot say why this is. But, Liberty has been declared as only the second such recorded case.
My question is – is the tumour / lesion ever likely to resurface or grow again?

2. mvarlan - March 7, 2013

Hello Mark,
HH tissue is not known to grow back or suddenly grow larger. Left untreated, the lesion will remain the same size proportionately to the brain. When the brain’s development is finished (mid 20’s) the HH tissue will stop growing as well.

Some patients continue to have lingering symptoms even when a complete removal is thought to have been achieved by direct visualization during surgery and/or through MRI studies. MRI scans are not perfect so the possibility of a small amount of HH tissue remaining in the brain that remains undetected by imaging is felt to be possible in those who continue to have seizures or other related problems. Secondary epileptogenisis is a theory that suggests other areas of the brain start to cause seizures so in the event of complete removal of the HH tissue, seizures persist.

Our team reviewed the MRI scan of a patient who had GK radiosurgery to the HH at another facility seven or eight years before our review. We were unable to identify any HH tissue on the MRI scan. Unfortunately this patient didn’t have regular MRI scans so we don’t now at what time frame the HH tissue disappeared. Other patients who have been treated with radiosurgery at Barrow have demonstrated a decrease in HH tissue size after time. Whether there is complete removal or only a partial removal of the HH tissue, many patients become symptom free after some form of treatment. If your daughter is doing well I suspect she will continue to do so.

With continued research of this condition the Barrow HH team learns more about this condition and how to successfully treat those affected by it and improve their quality of life. We are currently working on three separate projects to unravel the mysteries of this disorder. Thanks for your question. I hope this addressed your concerns.

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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