AVM of Rt. hip,thigh pelvic & back - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
  #1  
Old 02-26-2005, 04:12 AM
maryditz
 
Posts: n/a
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.
Reply With Quote
 


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
My story of living with a Giant Hairy Nevus on my back!! ocongr Living with a birthmark - my story 16 08-08-2014 09:43 AM
9 month old Hemangioma on Back Dawn and Baby Presley Help and Resources for Hemangiomas 17 03-08-2010 03:59 PM
Hemangioma on the back of the head bleeding.. synthesis2 Help and Resources for Hemangiomas 17 09-02-2008 03:05 PM
faded bruise-looking marks on back of spine at waistline w/ "leaking" from hip to hip bryandylan AVM Help and Resources 6 07-13-2006 12:25 AM
PWS on back of right leg. Please Help!! ncwh Port Wine Stain Help and Resources 1 07-08-2004 05:09 AM