Food frenzies and friendship

One of things I miss the most about my pre AVM/Gamma life is my ability to network at my own will. To jump in my van and visit friends, walk around head lake, go to the grocery store or even go to work. To talk to friends, family, acquaintances or colleagues face to face. To exchange information. Thank you Mark Zuckerberg for Facebook or I would be completely insane by now.

This past Sunday John and I enjoyed the company of eight other families at our monthly "Gluten Free Food Frenzy".  The group was established by my friend D and her daughter this winter in an effort to "simply share knowledge and build community around the gluten-free lifestyle by hosting a monthly feast. It is a family friendly fun and fabulous free of gluten (egg, soy,dairy, peanuts and other allergens) food fest."   Month to month the attendance and location varies but each of us come to enjoy fabulous food with like minded families.  Not all of us have food allergies but we all share the belief in healing our bodies with good food.

Sunday morning was rough for me.  I had continual focal seizures and I was exhausted.  Logic said I should stay home and sleep but I chose to go.  I am so  glad I did. 

My friends know that at times its difficult for me to string a sentence together.  To focus, collect my thoughts and say what I want to say (Writing is easier. Possibly because I can continue to edit over and over). After a morning of seizures I thought I would be a disaster.  I didn't plan to stay long.  We were the first to arrive and one of the last to leave.

Funny thing is my comfort level with this group was so relaxed that I never struggled at all.  Ok I did a little but it wasn't a complete disaster. I also knew that if I did have a seizure I was completely safe.  John was by my side to translate if necessary.  My friends wouldn't care if I couldn't talk, stuttered, stammered, or even drool.  We had the stage ready if we needed to play charades ;)

How refreshing and rejuvenating it was to have real conversations about the things that matter to me that wasn't completely AVM related.  How wonderful it is to have loving, caring, real friends, both old and new.

Thank you John for taking time away from fencing to support me.  ( thanks for fencing as well)

Sending love from the hill.

What ever happened to the holistic approach?

Given my brain is a little broken as I write this my point may not be immediately clear.
Bare with me - I have a story to tell.

I have been trying to get a hold of my Neurosurgeon for a while.  Since I had my last  MRI and consultation in December my seizure activity has began to pick up - again.  I am experiencing frequent muscle weakness and sore joints on my right side.  My AVM is on the left and the swelling effects movement, among other things, on my right.  I had sent a bunch of emails, made a few calls, left some messages all of which were not responded to.  The hospital where I received Gamma Knife Surgery is not the hospital my Neurosurgeon actually works at full time so sometimes it is difficult to track him down.  As it turns out he was away for a few weeks. I decided not to pursue the other members of my team because they are not as familiar with my "unique case."  (I now have his personal assistant's email address so I cc everything to her at her request :)

A couple of weeks ago I visited my Family Physician and had her run a bunch of blood work.  She humored me but said, "you know it will all come back normal". I smiled.  I requested the lab send the results to her but also to my Neurology team at Toronto Western Hospital and my Cardiologist at St. Michael's Hospital. "Normal or within normal" are her go to phrases.  I no longer know anything and nothing in my life is within normal.

While at my appointment I shared with her my increase in seizure activity.  She suggested that maybe I go off an anti depressant I have been taking because it may decrease the effectiveness of my anticonvulsant.  Interesting.  I had already independently decreased my dose from 60 to 20mg before I had surgery so stopping wasn't out of the question. Done.  The doctor who originally prescribed this medication told me that with my "AVM diagnosis I have much bigger things to worry about now".  I assume she meant bigger than mental illness that haunts my family at large.  (Keep in mind we only have one brain).

Last fall I was referred to a Cardiologist because my Geneticist accidentally stumbled upon "something very wrong" with my heart while looking for more AVM's in my heart and lungs. Not vascular (AVM), not electrical (like B) but muscular.  The left ventricle was beating 50% slower than it should be. New problem unrelated to everything else. Really?  Unrelated?! I have learned that when you look for something you may actually find it or something completely unexpected.  I have had four different tests on my heart over the past six months. The Cardiologist has been wonderful but he too believes my AVM is more important than anything else at this moment.  I will finally hear the results and prognosis on April 4th. Sigh...  I have so many questions... What caused this?  How long has it been going on?  Does this explain why I don't recognize my own body?

Since I am already making the trip to Toronto to see my Cardiologist I decided to touch base with my Neurosurgeon - one more time.  I sent him a quick email to let him know I would be in Toronto on the fourth which happens to be his clinic day.  I reminded him of my previous emails, the increased seizure activity and told him I was no longer taking Prozac.  Within minutes he responded. "Prozac is known to cause seizures.  Please discontinue and come see me on the fourth."  Interesting!  It's never been a secret I was taking this medication.  Nor has it been a secret that I have regular seizures.  So why the AHA moment now?

I would like nothing more to hand over my medical files for the past 15 years to an eager medical student and say. "Here!  This is a list of symptoms and though they may seem unrelated I feel like everything is connected.  I am of one body and mind.  Please do not treat a part of me.  Treat me as a whole."

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.