My Experience with my Lung AVM

Types of Avm's Pulmonary AVM, Heart AVMs & HHT
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As I have searched this support group, I have not seen a lot of info regarding lung AVM. I wanted to share my story with everyone to possibly help those with lung AVMs.

A year ago today, I went under the knife. I did not go under the knife for cosmetic reasons but for a more frightening reason a lung mass. In March 2010, I went to the emergency room for abdominal pain. Although the pain went away, the CT scan revealed abnormalities to my lung. I was to follow up with my doctor and have a full chest CT scan. I met with my doctor who assured me that it was probably nothing, but ordered the chest CT scan nonetheless. This CT scan revealed the same lung abnormalities and a mass about the size of a fifty-cent piece in my lung. Iā€™ll be honest I was scared. I thought the worst thing immediately ā€“ Cancer. I kept envisioning myself dying and leaving my husband all alone.

I made an appointment with a pulmonologist at the Mayo Clinic in Jacksonville, Florida. I was happy that such a great hospital was located in my town. I met with the pulmonologist who assured me it was not cancer, but probably something fungal since I have had bronchitis and pneumonia several time throughout my life. He scheduled a bronchoscope the next day.

The bronchoscope procedure was not too bad. They numbed my throat and stuck a tube down it with a camera to view the mass and take a biopsy. During the procedure the mass appeared to be surrounded by inflamed blood vessels so they could not take a biopsy. Instead they swabbed the mass and waited for cultures to grow.

I had to wait several months before learning that the results were inconclusive. This left me with several options. I met with an infectious disease specialist the Doctor House of Mayo Clinic and the pulmonologist. Their thoughts were to wait and see if the mass grew or meet with a cardiothoracic surgeon to have a lung biopsy. J and I decided we would meet with the surgeon and make a decision after that. After meeting with Dr. Richard Agnew, we decided that the surgery was the best option. We would learn what the mass was and I would not be so stressed any more. There was still a concern with the surgery 1) it was surgery which brings a lot of risk and 2) I could lose a portion or my entire right lung depending on the type of mass.

On the day of the surgery, July 23, 2010 my husband, mom, dad, step mom, and aunt arrived at Mayo Clinic for the surgery. The nurse took me back for the surgery prep alone. As I sat waiting for the iv and epidural, I started to get scared. What if I didnā€™t make it out of the surgery? Had I said my proper goodbyes? Was I happy with my life?

Luckily, I made it out of the surgery just fine (I guess you realized that). The mass was removed and I got to keep my entire lung! That was a shocker. I was diagnosed with arteriovenous malformation (AV Malformation). I spent 6 days in the hospital recovering and another month and half really healing.

I was left with a 7-inch scar on my back and a scar on my stomach from the chest tube. I use to be the girl who got bronchitis 3 or 4 times a year and this year I never got it. I am the healthiest I have ever been.

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Hi Alicia! Just read your story & itā€™s very interesting-on this site I havenā€™t heard much of AVMā€™s outside the brain actually either-I donā€™t know if theyā€™re more rare-or just if they donā€™t have as many issues than in the brain or what. The only reason I found out about my AVM was from a car accident. I sometimes wish I didnā€™t know about it & I read so many stories of how brave everyone is to go through surgery! That is great news that you are healthy & living life normal now! i wish you the best!

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My son just was diagnosed with a pulmonary AVM. He had his coiled on July 8th and has been fine since. You are correct that there isnā€™t a ton of information about pulmonary AVMs out there. I assume that you were advised to get yourself checked for HHT? We are awaiting genetic test results.

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Hi,

I was diagnosed with a lung AVM in 2005, it was a horrendous experience, almost out of a dream that you would never imagine. It started in jan 05, I remember waking up to go to work, went in the bathroom and suddenly my right arm just flopped to the side and went completely numb, i was terrified. I managed to go into work but the whole day it felt weak and was a struggle. I decided than to go into a&e (im based in UK, London btw) the doctor at the hospital diagnosed me with carpal tunnel syndrome and gave me a wrist support band. So anyways I was using this for some time but my symptoms were not improving, instead it kept getting worse. I started feeling extreme fatigue, some times breathless, lacked in energy, so I decided to pay another trip to the hospital and they did a chest x-ray and the doctor was saying how they x-ray looked abnormal and they could see a black dot and thought it could possibly be pneumonia or tb. I was than referred to the chest clinic where they did further tests but it came negative for tb. The doctor than recommended a CT scan of the lungs and thatā€™s when they discovered I had an AVM in my lung. When the doctor told me this I felt terrified, I had no idea what this meant, the doctor said I would need to be treated for it and it was nothing to worry about. This reassured me only to go onto realise it wasnā€™t very reassuring as it was something to worry about as the next few months proved. My condition became much more worse, the countless times I went to a&e, only to be told I was ok and came back home feeling even more depressed. It was probably the lowest time in my life, I felt extreme depression, lonely, hurt, angry, lots of emotions mixed into one, I just wanted to feel better, normal. I couldnā€™t concentrate, my condition was debilitating, I felt disabled, I didnā€™t like going out, wanted to stay indoors in bed. I was suffering from chronic fatigue, weakness of the muscles, pain in my chest, couldnā€™t walk much, everything felt a struggle. I was devastated, than one day I suddenly felt very sick than usual, I was gasping for breath, and kept telling my mom Iā€™m going to die call the ambulance quickly, luckily my brotherin-law came to my house and he took me to hospital, this time the doctor took blood from my pulse which was very painful and said my oxygen was very low and they decided to keep me in. By than it was September, I went onto stay in hospital for 3 weeks, they had embolize me twice as they couldnā€™t do it the first time, I had a coil inserted in my right lung. I had to stay lying flat for 6 hours after the surgery, it felt like my whole life had been turned upside down. After the procedure my oxygen improved dramatically, I came home after a 3 weeks ordeal. So life went on but I was still feeling unwell, I was than referred to another hospital and there they specialize in HHT, the condition that I have, I wish I had just been there from the start as the other hospital were quite clueless on AVM and gave me misleading information. I saw Dr. Shovlin and she is a great doctor, she comforted me loads and her words were very reassuring, she was an expertise in this field. I had to have another embolization as there was still avm left, so I had to stay for 2 nights and get that embolized. After this procedure I did feel better but some time my right lung hurt, and it feels heavy, I can feel something there, I know life may never be the same and my body may never feel the sameļŒ. So skipping 6 years on im married and expecting my first baby, and I am very scared, I broke down yesterday and cried my heart out, Iv read on several websites that lung AVM during pregnancy can be life threatening, some women have died from it, im soooo scared now and praying nothing happens, its horrible living in constant fearļŒ

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Hi,
I had a stroke because of a lung AVM. My 3 out 4 children have it too.

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Hi Rose,

I have just read your story ā€¦ wow. I was diagnosed with PAVM back in Nov 16. I too have just been referred to Dr Shovlin and Dr Jackson. I am waiting for an appointment, iā€™m scared but sort of excited that at last something is happening. Reading your words of how Dr Shovlin was great has helped also. Youā€™re right it is horrible living in constant fear, I have the same, any aches and pains I wonder if it is due to the AVM, it is beginning to get me down, I try to stay positive but it is difficult sometimes. I just wished people understood how dangerous these AVMs can be. Take it easy, have a good day. Mandy