MRI/MRA results with Dr Metry

The lovely Dr Denise Metry

Tuesday was our last appt at Texas Children's Hospital and to us our most important with Dr Metry.It was the most pleasant Dr's appt we have ever had and Dr Metry is just wonderful.The appt was about 2hrs and many things were discussed.So we will start with Jayda's Hemangioma.

Dr Metry said that her H is looking really good and that she does not need to go back on Propranolol for now.She said that our PHACE kids H tend to grow a bit longer and if we see a big change then put her back on it.She said Jayda is definitely a good candidate for laser at about 4yrs of age and that her skin type will do well with the laser.Now to her aterial anomalies.

FINDINGS:ANTERIOR CIRCULATION.Portions of her internal carotid arteries are tortuous.Her left ophthalmic artey is not visualized and her left carotid terminus is more posterior than is typically seen.The left A1 segment is hypoplastic but present.The right A1 segment does not originate from the internal carotid artery but rather an artery coursing around the temporal pole.No evidence of stenosis or aneurysm is seen.

POSTERIOR CIRCULATION:We will cut a fair bit out and give you the more important bits.The basilar artery is complex and tortuous predominately on the left.A linear defect due to fenestration and or loop is seen left of the midline slightly proximal to the left superior cerebellar artey origin.A right posterior communicating artery is not well visualized,the left P1 segment of the posterior cerebral artery and the left posterior communicating artery is not visualized.No evidence of stenosis or aneurysm is seen.Given the complexitity of the region of the basilar artery terminus and that the exact anatomy is difficult to deineate a follow up CT angiography can be performed if desired.

Texas Children's Hospital

We spoke about the CT angiogram and Dr Metry called Dr Clark to see if we could be scheduled in for one.He said that because of the radiation we can just wait and do follow up MRI/MRA every six months.He told Dr Metry if there were any big changes or any talk of surgery he wants us back in Texas.The MRA of her neck showed the dominant right vertabral artery is mildly tortuous.There is a small caliber vessel to the left carotid artery that may represent an anomalous ascending pharyngeal artey.There is early bifurcation of the left common carotid artery at the C6 level.The distal cervical internal carotid arteries are tortuous with loop formation left greater than right.No stenosis or aneurysm is seen.So on the whole things are looking good,but we are still not out of the woods.The biggest relief was no stenosis or aneurysm was seen anywhere.

Dr Metry gave us the big folder that was given out at the 2008 PHACE Conference along with the consesus statement on DIAGNOSTIC CRITERIA for PHACE Syndrome and the Clinical and Laboratory Investigations(we have a lot of reading)She was also going to take all our blood for the registry but needed a consent form from Dr Siegel,she has given us her email and she said we can get blood taken back in Australia and have it FEDEX to Dr Siegel.

She is writing up everything from the appt as well as Dr Clarks findings and emailing them to us so we can give them to our Dr's at PMH.She wants us to continue sending her every test that Jayda has, as she is now on the PHACE Registry.

The hospital was enormous!

CONCLUSION:Tuesday was just one of the best days we have had and to now know that the chance of stroke is less likely than what we knew a couple of months back is a huge weight lifted from our shoulders.The scans were extremely informative and without them we would never of known that what we had been told previously was incorrect.She still said the next 9mths are still critical for Jayda as this is usually the highest time for a stroke to occur if it is ever going to occur.