I better stop and smell the AVMs

Coming to this site has made me aware that I am in somewhat of a denial regarding what has happened to me. I posted on a blog that I am trying to get started about the night that I discovered my AVM. Funny, I didn’t even know anyone but me ever read anything on that thing until tonight. And there it was a note from Shalon that directed me to this sight. Up until now I have been trying to take this rather lightly as is my character, which can be good for some things and bad for others. In reading a few of the many posts here I have come face to face with my existence. I need to take this more to heart and not regard it as a moment in time that I will just run through as I have done in some many facets of life.

I must admit thinking about it is making me feel somewhat overwhelmed. I just had my AVM treated by gamma knife on July 7, 2009. I was told that the AVM is located near the brain stem, which made craniotomy a less desirable treatment solution. I don’t know the size in centimeters, but I was told it is small. I am back at work now and find that I do still have tenderness on my scalp and I also have occasional headaches.

What gets me most is the waiting game. I also hate the thought of calling the doctor for every ache and twinge so right now I am waiting for the four month follow up. I am not a “woe is me” kind of guy, like I said earlier I typically run through things only pausing briefly. Somehow coming here has made me think I better stop and get a good whiff of this AVM thingy…

Sorry if I posted this in the wrong place…

Greg- posting here works just fine!

And taking this lightly to some degree…well it’s probably a good thing. You can get all together too caught up and “woeful” with these AVM’s if you let yourself. But it sounds like you aren’t the type of guy that will let that happen.

Be a little overwhlemed, call the doc if you need to (I’m totally high maint w/ my doc) and let yourself get comfortable with what you have gone through and the journey that still may lay ahead. Give yourself the opportunity to figure out how you feel about all of this. It sounds like it won’t take you very long to decide you are one lucky guy! :slight_smile:

And ya, I totally feel for all of you “brainers” that play the waiting game after radiation. It would drive me crazy too!

Good luck with everything and let us know how you are doing.
Shalon

Hi Greg,

Welcome to the group. Everyone here is wonderful and know that we are always here to listen and try to help from our own experiences.
It sounds like you are a go getter and don’t let things get you down.
I wouldn’t start now.
Let the AVM take it’s course and adjust your life accordingly but don’t let it keep you from doing the things you really want to do.

Let us know how you are doing,
Susan

Greg, welcome to this site. I’m glad you found it even just to know that you are not alone in your journey. There is a wealth of knowledge from everyone’s experiences. Living in oblivion tends to be the way I used to look at life too and that’s not a bad thing sometimes. Try not to get too overwhelmed by the “AVM thingy”. One day at a time. Good luck to you!

Well apparently we are all supposed to “get on with our normal lives” so I guess that is what you are doing! And good for you to be that type of person to roll with the ups and downs of life. Everyone handles this condition differently. You need to do what is best for you at the time. Maybe at some point you will need this site more and then you can lean on us to help you thru. My son also had Gamma. I wish you the best.

Hi Greg.
The waiting game is incredibly difficult. You find you can put it out of your mind for much of the time, but then suddenly, WHAM, you start thinking of the “what ifs”: what if I have a hemorrhage anyway? What if the radiation did harm to my brain? What if I have a hemorrhage but don’t know I’m having one because I don’t know what one feels like? and so on. But just keep reminding yourself that worrying about it during the wait won’t change anything, so you might as well just put it out of your mind. But never be afraid to call the doctor for ANYTHING. They know that it is all new to you, and you never know when a symptom you are having could be important. And if they say it’s nothing to worry about you’ll have peace of mind.

Good luck. I hope the final results are great.

Hi Greg
I defo put my head in the sand when I had my bleed, never spoke to family or friends abou it
It was the old 'Well you look fine so you must be fine and all better’
This was the only place I ever mentioned it and thank God Connie found me out there lost
Waiting for results is a real pain I got the all clear about a year after my embo but hey I got it so yeehaa
Whatever way works for you go with it, we can only take it one day at a time, I’ll keep my fingers crossed for your 4 month follow up, take care.

Hi Greg,

It is tough waiting it out. Having the support of this network is great. There are a lot of social, smart people , who make you feel very comfortable and have a lot of information about AVM’s.

Mine was diagnosed when I was twenty. Unfortunately twenty five years ago, there was only the proton beam treatment available. It didn’t work, but I didn’t have a bleed for twenty five years! The technology is great now and I hope you have good luck.

I know it’s hard not to react to every ache and pain, I know I get into that place at times, But I found I had to live my life too and I have. While the AVM is a worry, don’t become consumed by it. There are a lot of people here that continue leading their lives and deal with the limits that come with it. You sound like you have a good way of looking at life because something like this can make some people immobile. It doesn’t seem like you’re one of them.

Good luck and if you have any questions ask.

Mike