AVM of Rt. hip,thigh pelvic & back - Vascular Birthmarks Foundation Forum
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Old 02-26-2005, 05:12 AM
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Default AVM of Rt. hip,thigh pelvic & back

Hi all. Im a "newbie" and very happy and relieved to find others that are going thru the same as I am, allthough I am very sorry you are all suffering as well. I was diagnosed at 20 with an extensive avm. I was told i had 6 months to a yr. to live because my heart was overworked. Of course I was devastated to say the least but the worst part was that I had just given birth to beautiful boy & was in no way ready to leave him yet! Well the good news is.. I'm stubborn, I turn 40 this year. So dont give up hope!!! I have had over 40 embolizations, high output heart failure, "mini" strokes, unbearable pain, seisures, miscarriage,divorce, seen countless dr's and tests, and more. Mostly alot of deppression. But I am lucky to be here and I was able to have a beautiful baby girl and remarried and have 3 gorgeous step sons. I'm determined too get thru this and when I am ready to give up, which is often, all I do is start thinking of my family and find strength to go on to be the best mom and wife I can be for them, my goal is to see each of them graduate and become independent and all this hard work would be for a great reason. Ive read some of the posts and the most important thing I can tell you is get INFORMED ask any and all questions you have, if you dont agree with the dr. dont give up, keep looking and researching dont settle for less. I have made to many uninformed decisions and I am paying for them now. I was told if I didnt have my rt hip and leg removed within a couple months that I would die, and that same day a diff. dr. said if I had that surgery I would die on the table because it was to extensive and there was no way to control the blood flow and I would bleed to death. Needless to say I still have my hip etc. I finally found a dr. at John Hopkins who took a chance on me and saved my life and is still continues to keep me going. Most avms never go away they just keep growing but you can control them.If I can help anyone please let me know. I have also been thru pain management clinics and that is another place you need to be Informed about because sometimes "quick fixes" arent always the best way to go. God bless you all and the best of luck.
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