More late breaking medical news...

Last Sunday we left our cozy home on the hill at 4am and drove three hours to Toronto so Brenden could have his annual MRI.  The purpose of the MRI is to monitor the lesions (yes more than one) in his brain.  Of the three known lesions there is one "of interest" in the left frontal lobe.  The same place my AVM aka Monster lives.

We spent the rest of the day being silly at the Science Centre, eating good food, playing in the arcade and swimming in the pool at the hotel.  By the time 9pm hit all three children were exhausted from our very early start.

On Monday we met with a Neurosurgeon who needs to consult a Radiologist to look at the MRI (Brenden's brain) closer and discuss their findings.... He is suppose to call me by mid February to discuss the results. If he forgets to call me then I should call him.  Yes, he really said that.  The best part of that particular appointment was Brenden playing "games" with the Neurology Fellow during his assessment.  He is also being scheduled for an EEG to check for the possibility of seizure activity.

Next stop of the day was the Chest Clinic to meet the doctor who will be testing our family for HHT.  If you want some quick facts about HHT click here.  I have already have been examined at a different hospital in the quest to find other AVM's or telangiectases.  I, thankfully, did not present any more than the one in my brain.  Brenden is known to have one in his nose and one in his mouth.  His heart is clear.  We know that because his cardiologist did an echo bubble study before heart surgery last spring.  His lungs should be X-rayed though we never discussed that... Not to self - make that happen sooner than later.

I think it safe to assume that Brenden and I do have this genetic disorder. Brain AVM's are extremely rare.  For both of us to have one without HHT would be extraordinary.  HHT is uncommon but not rare.   Telangiectases are basically an abnormal connection between small arteries and veins.  They can show up anywhere in the body but are most worrisome in the brain and lungs because if they rupture they will cause stroke or death. 

After answering endless questions at the Chest Clinic we were sent to the blood lab. They will first isolate the markers for HHT in Brenden and I then look for the same marks in the girls. Their blood has been banked for the occasion.  If they do not have it then their children will not inherit it.  If they do have HHT then their children will have a 50% chance of also having it. And so on and so on.

Every family with HHT is unique and it often goes completely undiagnosed generation after generation.



So what does all of this really mean?

More waiting. More questions. More living.

Sending love from the hill.

Steph