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AVM Survivors Network

Any one with lung AVM's?

#1

My sister has AVM’s in her lungs and her brain but she doesnt have HHT…is there anyone on here that has them in their lungs?

#2

I was diagnosed last year with a avm (1.6 x 0.6 cm) in my lower left lung… but they still dont’ know if i have HHT or not.
I had a coil embolization done to treat it last year… it initially shrank a small bit after 6 months, however is still shunting (which leaves the risk of stroke, and bleeds open). I had new scans (chest Ct and echo with bubble study) just done this month and it hasn’t changed at all in 6 months, nor has the shunting gotten any better since they found it. I’m seeing a pulm MD tomorrow to discuss surgery options. From what i’ve read and been told, most pulmonary avms are easily treated and obliterated with embolizations, however mine seems to be resilient. What is the plan for your sister?

#3

just curious do they know why she has AVMs? does she not have other symptoms of HHT? I was told just because you get a negative or inconclusive test result form genetics doesn’t mean you don’t have HHT. Just wondering we are in the middle of just finding out we have HHT? 7 of us getting MRIs now

#4

Hey, they have never actually done a test to see if she does or doesnt have HHT, they came to the conclusion because she doesnt have any of the characteristics associated with HHT. (Apparantly she is just very unlucky) Her Lung Avm’s have a habit of re growing or she develops more… which is worrying, and is something that her surgeons are worried about. When she had one of her brain AVM’s removed they said that they were going to take it for DNA testing but so far we havent heard anything about it, she has a meeting with her neuro surgeon in the next week, so i will let you know what they have found. I wish they would just figure it out already!!!

#5

Hi Helen - I have multiple avm’s in my lungs. They have all been embollized through three separate procedures and for now anyway - all of them are behaving. I have HHT though, so at least they knew what they were dealing with (why I had them). There is a family history of similar problems. I am currently in the process of having genetic testing done, and then will have my kids tested to see if they have the same gene, and then see if they have avm’s hiding in their bodies too.
It sounds like you have been through SO much…I’m glad to hear that your sis is improving, but I can’t imagine how difficult it must be. You and your whole family are in my thoughts and prayers! A ‘rogue gene’…gad!

#6

HI I have multiple Lung AVMs in both Lungs! I have been genetic tested and did not test positive for the kNOWN Genes! BUT I DO HAVE HHT!!! so does my 8 year old daughter who have Lung AVM.
JUST because you tested negative for the KNOWN genes doesn't mean you don't have HHT because they are still searching for more mutant genes that can cause HHT! PLEASE anyone with Pulmonary AVMs or Brain AVMs needs to be seen at a HHT center! you can visit hht.org for a list of centers and to speak to one of the patient education liaisons! BECAUSE if you do that means more family members or your children could have HHT as well and no one wants to see anything Horrible happen because a local doctor said you didnt have it! I have read many heart breaking story's from new born to adults getting misdiagnosed that cost them there life!!PLEASE I beg of you to consult a HHT center!!!

#7

By the way if you have LUNG AVMs you also need to be sure to have a bubble filter on all IVs and also antibiotics before any dirty procedure such as dental cleanings/work and tattoos!!! If you dont do these things it could cost you your life! also no scuba diving EVER!!!

#8

Hi Tina,
I went to an HHT centre, and even though I tested positive on their bubble echo, (but negative on a different one); and I tested positive on an oxygen shunt study (but negative on another…
They didn’t think I had HHT, so that’s what made them believe I don’t have a lung avm… The dr actually said I must have had 2 false positive tests done… lol
What tests have you taken that were the “diagnosing tests”?