Have you ever wished that your Mom had cancer?
Well I did.
Doctors know more about cancer. They can give you timelines and flow charts and support groups. People hear the word "cancer" and they instantly feel bad for you. Your fate, or the fate of your loved one seems to be sealed in their eyes. They may not understand how you are feeling or what you are thinking, but they know that cancer is not good.
This thing in her brain, this AVM, no one gets it. I say "My Mom has an AVM" but no one understands. They don't give me that look. That "cancer" look. But sometimes I feel like I deserve it.
It has been a long painful year of unknowns, of second-guesses, of grieving and anger. And where are we? We are left with a stamp that reads "un-treatable". I have seen my Mom suffer from this abnormality in her brain more ways than I could have imagined. It has taken everything from her. Her job, her comfort, her education, her perfect speech. But most painfully it has taken her faith and her hope.
I don't want to hear one more person tell me it will be alright. No one knows that. They said things would be alright in October, but then she had a stroke. I lost parts of my Mom that day. Parts of her that no one else understood. Parts that no one else wants to talk about. I'm thankful to still have her, but everyday I wake up knowing that I might not always.
"Un-treatable" Words that a doctor should never tell you.
While her brain is un-treatable, I fear that her heart, my heart, is un-treatable as well. When will things get better? Will they? Do other people understand?
I need to know I'm not alone in this because you can tell everyone you know, but unless they have been there, you stand singled out. You are alone, whether you want to be or not.
I hear you and I understand. Know you are NOT ALONE.
When I was first diagnosed with and AVM I didn't even know what an AVM was. Only after many many hours of research and a barrage of questions for my neuro-surgeon did I finally come to a realization of my condition.
I used to tell people of my AVM but was looked at with a ,...huh?....what's that? Now I just attempt to explain that I had a "brain bleed" or an anuryism (sic). People can relate to that explanation it seems.
My AVM is treatable, but I have decided, and made a conscience choice of no treatment at present. (please my page for details)
Megan, I know this reply might sound somewhat shallow, but I guess what I am trying to say is this; You found this site, we are hear for you and your mother, we will do what we can to support your family in whatever ways we can, we understand, we hear you, we know,,...and please know,...you and your mother are NOT ALONE ANYMORE.
Megan,...I for one will keep you and your mother in my thoughts and prayers.
Hi Megan. AVMs only occur in about 1% of the population. So unless a person works for a neurologist… it’s unlikely you will find anyone who knows that AVMs even exist. This is a quote from the actor Christopher Reeve…“Once you choose hope, anything’s possible”. I am sending positive thoughts and prayers your way!!!
I also know exactly what you mean!!! Not that I want cancer anymore than I want this avm but it would certainly be easier to explain and people would get it and not make you feel like an avm is nothing!!! Plus I hate having to describe what it is and everything I have to give up and what my family anfd I have gone through. You are def not alone with this Remembe one day one step at a time <3
Hi Megan. You made me curious so I looked up the phrase "never heard of an AVM" on here...
It almost looks like everyone on here starts with that phrase.
Hi everyone, I really appreciate your kind thoughts and words. It is so strange how knowing that others understand what you are going through makes you feel just a bit better. The rest of you struggling with the same questions and issues obviously doesn't change my family's situation, but it certainly makes me feel less alone.
What exactly is being done to raise awareness of AVMs? I'm still pretty new to the whole thing and I don't really know what exactly is being done.
Where is the AVM in her brain? Could they not even reach it with radiation?
I have gone through this with my wife for the last two years or so at this point. 2010 being the worst by far. Bleeds, seizures, cronic back pain due to the blood in her spine. I won’t tell you it’s going to be alright, as people such as you and I, really have no idea. I will just tell you, you are not alone…not at all.