This isn't generally something I do,shareing my private life, but it seems to give me some comfort knowing I'm not the only one fighting a battle like this, and I can only hope my partisipation on this board will do the same for someone. The support members of this board have given me has been very touching and greatly appriaciated.
The world of AVMs is very new to me. I'm 46 years old. Last Wednesday, 12-22-2010, my wife rushed me to the ER thinking I was having a stroke. Luckily ( I think ) I wasn't. Instead it was discovered that I had a large ( 5.2cm x 4.1 x 5.1cm ) left middle cerebral AVM. The good news ( great news actualy ) is that it wasn't bleeding.
The neuro-surgen said he couldn't remove it and sugested I seek alternative treatments.
Yesterday I took the first step. I sent the hospital reports to the University of Michigans' Department of Neurosurgery. Now I wait to hear back from them.
Meanwhile I'm trying my best to keep the glass half full. I do realize how lucky I actually was. Its tough not to be scared and even harder not to feel sorry for myself, but I know thats not going to help.
Again I want to thank all of you for your support, I will keep you updated as I wander down this new path, hopefully some of the knowledge I gain will help give you insight to help fight your own personal battle. Thanks again,
Hi Sandy! Thanks for sharing the start of your journey. And yes, getting diagnosed with an AVM sucks plain and simple. And sure their is "good" news that it didn't bleed. That's great and totally important. But it doesn't take away the fact that you now have to deal with this, that all of a sudden your totally normal life has this very important and concerning addition. It still sucks. But you are already taking control of it, you are already fighting it, and you ARE doing what is best for you and with a healthy and realistic attitude. So feel proud of yourself for that. All of those other feelings of being scared, sad, overwhelmed...they get a tad bit easier each day and every step that you become more knowledgable, determined, and in control is a huge step in making those other feelings stay only a small part of this.
I hope you hear back soon and that you continue on with this awesome strength knowing that this group is totally here to help and support in everyway!
Good luck with everything :)
There is a group on this site called Inoperable AVMs. Those folks might have some great info for you. Please keep us informed as to your progress!!!
Hi Sandy we all know what you are dealing with. My avm is/was also large (5 cm) i had 2 embolizations and 2 gamma knives. My avm is located in the left temporal lobe, i just had my 2 nd gamma in 11/17/10. It is a long tough road but we all get through this! Its ok to have bad days and feel mad and “why me” moments. Then you will have the days where you are thankful that your alive and have not had a bleed. I hope the best for you and please keep us posted!!! Good luck when you get your results or treatment plan!!! Keep your head up and stay positive Also let your wife know how you feel dont shut her out it makes things harder on both of you trust me!!! And have her share all her concerns and stuff with you.
Well Sandy I think it is a very good thing your AVM didn’t bleed and it wasn’t a stroke. And it’s even better you are here. This is a scary and at times a lonely journey. I know that since the discovery of my AVM and in turn discovering this site my life has changed in every way. I received so much wonderful support and honestly feel the people here are my family. I don’t think I would’ve been so strong in the face of this monster if it wasn’t for the virtual high 5s and love that so many gave to me. This may be a personal battle, but know you are never alone in your thoughts or fears. Wishing you the best news from the University of MI. As you travel your path we will help light your way and when you need it to hold your hand and walk with you. It might be in the virtual sense, but as I found out it the feeling is the same.
Sandy, I found out about my avm in 1991. It scared the living daylights out of me at first. When I met with the surgeon a few months later, (the hospital I had to go to was a 4 hour drive for me) I turned down the treatment (gamma knife). In 2007, I started to have seizures and I made an app't to see my surgeon and to schedule gamma knife. When I got out to the hospital, I found out that I was a talk of the office. My doctor told me that he never thought I would have lived as long as I have without having it bleed. My original diagnosis was a 50% chance of being dead or disabled within the next 20 years. That was in 1991. I never thought that a 50 - 50 chance were bad odds, at least not in my book. Now, my avm is smaller than it once was but, I still have it. My point is, It's been 20 years since mine was discovered And I'm still here. You and I are close to the same age.... trust me - Stubbornness pays off. :)