AVM of the lung

Hi everyone,

I am new here and trying to find my way around so I apologize if I am posting this in the wrong place.

My story...

a few days ago I went to the ER with pain on my left side, we did a CT scan and it "accidently" picked up something in my lower right lung. The doctor came in and said this like it was no big deal (i am pretty frustrated with doctors) and said we could do another CT scan but this time with the contrast to make a better diagnosis (they already suspected it was an AVM) So i got that done and same results "most likely an AVM 2x1 collection of tubular structures in my lower right lung.

I quickly made an Pulmonary appointment the next day and was lucky enough to get right in due to a cancelation.

I had that appointment yesterday, he agreed it looks like an avm due to the arteries or whatever coming out of the lesion. and said lets schedule an angiogram to be 100%then we will start planning on closing it with coils.

so that is where I am at right now. The doctor i seen yesterday did not seem very familiar with lung AVM. when i asked him questions he was even looking up the answers on his computer as i was asking. not very comforting. So ive been online searching for a doctor familiar with this. I cant find half as much info, doctors or anything as AVM in the brain. Which is frustrating to me.

I just want to know the right thing to do. So far Ive had no symptoms related to the AVM, and I am so nervous messing with it will make it worse. I dont know if i could find a doctor who may want to just watch it for a while?

By the way, I am 28 years old. mother of 3 small kids. I am scared to death.

I feel like I dont know how to go on from here. I know I am probably being dramatic, but I just feel trapped. Like touching it might make it worse somehow (maybe thats not logical) but leaving it alone puts me at risk to have a stroke, or bleed and need some lung removed!!!

Can anyone tell me is 2x1cm large for an avm? Can anyone offer me any opinions?

Also, I amin the Boston area, if anyone can suggest a doctor familiar with AVM, particually ones in the lungs it would be amazing.

Thank you so much for your time,

Kelly

Welcome Kelly.



Folks with AVMs other than the brain are most welcome here. A higher percent of the the member probably have AVMs of the brain, but there are some with it in the lungs. You might also go to the search box on left of the main discussion page and type in “lung” (without the quotes). There are quite a few posts about them, but I didn’t read all of them (grin).



It’s 100% normal to be scared. If you are like most of us, you’ve never heard of AVM before the DR said that’s what you have!



Being in Boston, it’s a good place to be for treatment of an AVM.



Most likely, you’ve had this a long time, if not forever, so you should be good until they get an angio, determine a course of treatment, and get started with it.



Keep us posted.

Ron, KS

Hi Kelly Elizabeth. Anytime you find out that you have an AVM…it’s scary! I do not know about specific doctors but Boston’s Mass General has a good rep in dealing with AVMS. As far as having a lung AVM…my first cousin had one. The doctors removed it and he was just fine!!!

Kelly, I had an AVM in my brain, but I was saved by Dr. Christopher Ogilvy at Mass General. He is a teacher at Harvard and is an AVM guru. I wish you the best…Let us know how you make out! I will keep you in my prayers.

Ron thank you so much, I really apprecaite it!



Ron, KS said:

Welcome Kelly.

Folks with AVMs other than the brain are most welcome here. A higher percent of the the member probably have AVMs of the brain, but there are some with it in the lungs. You might also go to the search box on left of the main discussion page and type in "lung" (without the quotes). There are quite a few posts about them, but I didn't read all of them (grin).

It's 100% normal to be scared. If you are like most of us, you've never heard of AVM before the DR said that's what you have!

Being in Boston, it's a good place to be for treatment of an AVM.

Most likely, you've had this a long time, if not forever, so you should be good until they get an angio, determine a course of treatment, and get started with it.

Keep us posted.
Ron, KS

Barbara,

Thank you also. I apprecaite it. It really does help to know your not alone in a situation like this. I hope you (and your cousin) are doing well.

Barbara H. said:

Hi Kelly Elizabeth. Anytime you find out that you have an AVM...it's scary! I do not know about specific doctors but Boston's Mass General has a good rep in dealing with AVMS. As far as having a lung AVM...my first cousin had one. The doctors removed it and he was just fine!!!

Louisa,

Thank you so much! I am going to try to contact Dr. Ogilys office tomorrow. I wonder if he treats lung AVMS also? I have read a lot of doctor reccomendations on the site and seems like I found a few great doctors but then I look them up and it says they are NEUROs so it probably puts them out for helping me since mine is in my lung? I need to find a good doc! I am going to have a busy day tomorrow determined to find one with experience in lung avms in my area.

:) thanks again, I hope you are well,

Kelly

Louisa Cicillini said:

Kelly, I had an AVM in my brain, but I was saved by Dr. Christopher Ogilvy at Mass General. He is a teacher at Harvard and is an AVM guru. I wish you the best..Let us know how you make out! I will keep you in my prayers.

Hi Kelly. I am doing great and so is my cousin. My guess is Dr. Ogilvy can recommend a great pulmonary specialist for you!

Kelly, I totally agree with Barbara… Even if Dr. Ogilvy’s department doesn’t treat lung AVM’s, he is the most helpful, caring person (not just doctor’s, but people) I’ve ever met in my life. He will send you in the right direction. I am a huge fan of Mass General. If you would like to mention my name and that Dr. Ogilvy saved my life, please feel free. Please keep in touch and let us know how you make out. Keep the faith!

Kelly,

I am sad to welcome you to this group, but glad you were able to find it! The people on this site were able to offer great comfort following my dx.

As Ron mentioned, it is understandable to be scared -- just try and keep a positive attitude and refuse to let your fear control your decisions ;-)

The world of AVMs is small, so I am confident that if you speak with Dr. Oglivy he will point you in the right direction . . . I was fortunate enough to get a pro form the Mayo Clinic to do my embos.

Please keep us updated, and take care,


Joshua

Kelly,

I know you posted this a while back but I wanted to check on you. A year ago I underwent a lung biopsy to remove my AVM. It was 2.5 cm in size. I live in Florida and went to the Mayo Clinic. They were very helpful. If you need anything please let me know.

Alicia