Wednesday was clinic day for both Brenden and I. I had postponed both of our appointments to July to help ease some of the craziness surrounding the previous month. John and I have the trip down to a fine science as our confidence grows regularly travelling to, around and from Toronto. Who knew?
This week we are pleased to share that B is no longer a heart patient. Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare. He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome. Thus dropping WPW from the long list of acronyms that follow our names.
It has been absolutely amazing to watch this young man change before our eyes. He has become so much more active, strong and confident since surgery. We are very proud of him. We celebrated with a cake.
My Neurology appointment marked my one year anniversary of Gamma Knife Surgery. Dr. S was positively beaming when he seen me. As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM. It appears to be working therefore the clinic can claim success. The draining vein is occluding and eventually will seal off completely destroying the AVM. When the AVM dies my risk of stroke diminishes. That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.
When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."
Why am I losing my vision in my left eye?
Why am I still having so many seizures (daily in varying degrees)?
Why are they changing from partial focal to absent?
Why are the seizures starting to cross the mid line?
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia? (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side?
When will it start to get better???
"I don't know." Dr. S
Is there going to be permanent brain damage? Sadly, yes from radiation. Approximately 1 cm around the AVM in my left frontal lobe. How significant, we don't know. Once brain cells die they can not regenerate; it's forever. Yet the brain has an amazing ability to make accommodations. Will the seizures ever stop? We don't know, hopefully. We are optimistic that they will be better controlled by medication eventually.
In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic. Will I be looking for a new job anytime in the near future? No.
Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.
