Discussions By Condition: Repiratory conditions

Lung avm

Posted In: Repiratory conditions 4 Replies
  • Posted By: Anonymous
  • September 4, 2009
  • 00:52 PM

I was diagnosed with a lung avm 6 months ago and my Doctor has yet to send me to a lung specialist it is a small one but from what i have read small ones have a better chance of a bleed! My doctor is not real familiar with these things.. HOW concerned should I be? from what i have read most AVMs occur in the brain or spinal cord, that a lung AVM is rare and usually caused from a genetic disorder called HHT but she hasn't done any testing on me for these conditions that can cause a lung AVM. The only thing she has done is wait 6 months and made me have another CT scan. I cant fine hardly any information for a Lung AVM most all information is about Brain AVMs.. so if anyone has any information or advice for me please,please contact me!!! these things can be dangerous from what I have read they refer to it as a ticking time bomb.......email me at perswinn@yahoo

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  • I was diagnosed with a lung avm 6 months ago and my Doctor has yet to send me to a lung specialist it is a small one but from what i have read small ones have a better chance of a bleed! My doctor is not real familiar with these things.. HOW concerned should I be? from what i have read most AVMs occur in the brain or spinal cord, that a lung AVM is rare and usually caused from a genetic disorder called HHT but she hasn't done any testing on me for these conditions that can cause a lung AVM. The only thing she has done is wait 6 months and made me have another CT scan. I cant fine hardly any information for a Lung AVM most all information is about Brain AVMs.. so if anyone has any information or advice for me please,please contact me!!! these things can be dangerous from what I have read they refer to it as a ticking time bomb.......email me at perswinn@yahooMy daughter was diagnosed 2 yrs ago with lung AVM She had a large one and we had it occluded with a procedure that they go in through the femoral artery and block the arteries feeding the avm. This one was 9mm so really big. She has 3 more in left lung but too small to worry about till they grow bigger.... less than 3mm. Since then the AVM came back(a new artery started feeding it), so a second procedure. and now she will go in again in OCT because it has a feeding artery AGAIN! We had a complete scan of Taylor (10yrs old) and found an avm in her brain also and had this sergically removed! You need to stay on top of this condition! She tested positive for HHT but both parents are negative... amazing. She gets scanned every 9 months and frankly is living a healthy life filled with soccer, swimming, etc. We are lucky but vigilant about these avm's.Phoenix childrens hospital has been great! The brain surgery was done by the foremost expert in the field of brain AVM's. His name is Dr. Spetzler and he is at Barrows in Phoenix! How lucky we were! He even created the Spetzler scale to judge whether or not the avm warrants surgery.Good luck,Frank
    Anonymous 42789 Replies
    • September 29, 2009
    • 06:14 PM
    • 0
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  • I was diagnosed with a lung avm 6 months ago and my Doctor has yet to send me to a lung specialist it is a small one but from what i have read small ones have a better chance of a bleed! My doctor is not real familiar with these things.. HOW concerned should I be? from what i have read most AVMs occur in the brain or spinal cord, that a lung AVM is rare and usually caused from a genetic disorder called HHT but she hasn't done any testing on me for these conditions that can cause a lung AVM. The only thing she has done is wait 6 months and made me have another CT scan. I cant fine hardly any information for a Lung AVM most all information is about Brain AVMs.. so if anyone has any information or advice for me please,please contact me!!! these things can be dangerous from what I have read they refer to it as a ticking time bomb.......email me at perswinn@yahooI was diagnosed a lung AVM 2 weeks ago. I had a car wreck and they found the AVM in my lung. In May of 2009 I had a CT scan done because I had trouble with my leg. I was in a wheelchair for a month because I could not walk. When I had the CT scan in 2009 it did not show the AVm in my lung. Now the doctor said it has grew to about the size of a pool ball. I have trouble breathing. Sometime i can be just setting and lose my breath and I have to fight to get it back. I cant sleep because i cant breath. My doctor is going to seen me to a lung specialist and go from there. I have read that the AVM can bleed and can be life treating. I will pray for you. Please pray for me. My God Bless You.
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed a lung AVM 2 weeks ago. I had a car wreck and they found the AVM in my lung. In May of 2009 I had a CT scan done because I had trouble with my leg. I was in a wheelchair for a month because I could not walk. When I had the CT scan in 2009 it did not show the AVm in my lung. Now the doctor said it has grew to about the size of a pool ball. I have trouble breathing. Sometime i can be just setting and lose my breath and I have to fight to get it back. I cant sleep because i cant breath. My doctor is going to seen me to a lung specialist and go from there. I have read that the AVM can bleed and can be life treating. I will pray for you. Please pray for me. My God Bless You.I to have avms in my lungs you all are in my prayers.
    Anonymous 42789 Replies Flag this Response
  • search for Hereditary Hemorrhagic Telangiectasia Foundation, there are 11 centers in the US that specialize in these AV Malformations
    Anonymous 42789 Replies
    • November 30, 2010
    • 01:58 AM
    • 0
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