Sunday 28 August 2011

My on going medical drama...


For the past several weeks I have been experienced some unusual side effects from radiation. According to the website, doctors and nursing staff side effects are extremely rare. I could expect to return to my regular daily activities within 48 hours - Hmmmm.

Considering only 1% of the general population have an AVM, even fewer have one in the left, posterior, frontal lobe of their brain. Even fewer still have had Gamma Knife to fix it; so how do they really know what the side effects will be??


First day post op I had three focal/partial seizures in my mouth and the most amazing technicolour light show.  One week post op I was losing sensation in my hands and feet and continued with the regular light shows.  I spoke my Neurosurgeon and reminded me to listen to my body and get lots of rest.  I listened and things were feeling better so I decided to go back to work.

In the past 5 weeks the focal seizures in mouth have increased.  It started once or twice a week and has now progressed to twice within an hour.  It is the oddest sensation.  At first it kind of feels like having freezing in your mouth. It twitches and tingles but it gets really scary when I can no longer talk.  Even more scary when I know what I want to say, write but the brain to mouth connection is gone completely.  Each seizure leaves me feeling exhausted.  Each one gets worse than the one before.

I am beginning to feel like the medical community has dropped the ball with my case.  Many phone calls have not been returned from the TWH, Gamma Clinic. I've heard every excuse  going; most recently they have had no record of me calling and maybe I was calling the wrong number.  SIGH

My doctor here has been wonderfully supportive but she doesn't know how to help me because I am her only patient with an AVM who has had this treatment. The wrong medication to help the seizures could be deadly.  She is also trying to connect with my Neurosurgeon.

Last night I decided to take myself to the emergency room after two back to back seizures.  Just going to ask for help is a big deal because the reality is I know more about AVM's and GKS than any of the doctors in the emergency department (they are that rare).  Dr. A was great. He listened and respected that I knew exactly what was going on.  At my insistence he called the On Call Neurosurgeon at TWH to consult about anti seizure medication. The Neurosurgeon told Dr. A that "he does not support Dr. C's patients!" then rudely hung up on him.  So where does that leave me?

I have tried to go back to work and been unsuccessful.  In fairness to the people I support and my employer I will take a leave of absence until the side effects from treatment subside. I will continue to harass the the TWH GK Clinic and find the answers I need to live seizure free.  I will carry on. 



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