Patient update

AVM's are considered congenital, we are born this way.  In extremely rare cases Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) or HHT. 

In July 2011 I was referred to a doctor who researches HHT at St. Michael's Hospital in Toronto.  Given I have an AVM in my brain, some unexplained deaths and other members with AVM's in my family it was deemed necessary.  While at my day long appointment I had several tests searching for more AVM's in my liver, lungs, extremities and heart.  Though no more AVM's were found, during a ECHO Bubble Study they found something wrong with my heart.  Since then I have been under the care of a Cardiologist.  For eight months I have had several tests investigating the possibility of having Cardiomyopathy. 

Yesterday was results day.  I am very pleased to report I do not have it.  Happy dance!!!!  I met with my Cardiologist and he told me that during rest the left ventricle of my heart beats at the lower end of normal.  During activity it beats normal.  He told me I rocked my very awful fitness challenge.  You know the test where I rode a bike, sideways, breasts exposed, having an ultrasound with a cheering section present.  Fun times.  My heart muscles look healthy according to my MRI, the gold star in imaging.  I have been discharged from his care.  Deep cleansing breath. 

HHT testing continues.


Next stop of the day was to spend some quality time with my Neurosurgeon.  I had an appointment with Dr. S but my Neurologist Dr. C decided to join us.  Wow -  two members of my team giving me there undivided attention.  I thought for sure I would have the answers I desperately need.

Be warned this is were I begin to struggle. 

Though I am experiencing regular seizures, joint stiffness or weakness, confusion, vision loss, loss of speech etc etc etc  Dr. S is thrilled.  He believes that treatment is working.  Maybe, just maybe, my AVM is even gone already!  Of course we won't know for certain until we see my brain again in June, but maybe.

Now don't get me wrong if my AVM atrophies and is completely gone that's great. Less chance of a  homorrhotic stroke.  Right?  But when I questioned them further about my seizures and other side effects they seemed a little puzzled.  When I asked them about alternative measures to reduce or eliminate my side effects I was told to continue taking my anticonvulsants and maybe within time we could try and wean me off them and see what happens.  Those would be the same anticonvulsants that are not working now.

Thus lies my frustration.

My doctors measure success by the prospect I will, in time, be AVM free.  Therefore, their treatment plan was successful. Yeah them.

I measure success by the quality of life I am going to live post AVM and Gamma.

Next stop.... Naturopath.  YES, it's true :)
Now that's something I truly am excited about. 
Someone who will treat all of me;  not just my parts.

Sending love from the hill xo