New Member PAVM / HHT?

I’m brand new to this site and am technologically challenged, so we’ll see how this goes :slight_smile: I’m 59 and they discovered pulmonary AVM’s when I was 25. I had my third stroke at 27, so they removed my right middle lobe and left lower lobe of my lungs. All was terrific until just a few months ago; I had another stroke. I have lots and lots of questions, but I’m from Idaho and there aren’t any doctors here that know anything about PAVM’s. I’m going to Mayo in Rochester, Minnesota in three weeks. Everywhere I look, I don’t seem to find anyone that has AVM’s in their lungs?
Terri K

1 Like

Hi Terri K and welcome to our group. I had a brain AVM so can’t pass on a lot of similar experience, but can tell you I have heard noting but amazing things about Mayo in Rochester. I’m not that far from there but north of the border. We have a few @PulmonaryHeartHHT members here and have a specific group Pulmonary AVM, Heart AVMs & HHT - AVM Survivors Network which I have attached the link. Also if you see the magnifying glass in the top right, you can search there and will find quite a few discussions. Once again welcome and hope we can help out. Take Care, John

Terri. Welcome to the group. A couple of thoughts…

I haven’t had any AVM’s in my lungs, but the lower half of my left lung no longer works because my AVM basically severed or at least destroyed the phrenic nerve that controls my lower left diaphragm. While it is not the same thing, it’s in the same area…

I have been a patient at Mayo in Rochester three times and every single time the place and its people amaze me. Yeah, the doctors are great, but all the way down the corporate heirarcchy and even in local businesses you can tell that everyone is very observant of the people who look like they might need assistance. It doesn’t matter whether it’s their job or not, they are walking down the hall at the hospital and someone passes them going the other way really slowly and looking at all of the signs, more often than not, they’ll stop, give them directions if that’s what they need and if it is confusing, we’ve even had them walk with us to make sure we got there. I don’t know if you’d have the same doctors, but I’m going to DM you the name of mine - if you do see him, tell him I said Hi.

Looking forward to hearing from you when you get back and if you have questions before you go.


I’m hearing terrific things about Mayo!!! I have had several medical issues that could possibly be linked to other AVM’s, but I can’t get any answers here because none of the doctors in Idaho have any clue about it, nor can they answer any questions. After my stroke, the Nueroscientist here said he was concerned that I had HHT disease, but no one hear has even heard of it, and he said that was a far as his knowledge about it extended… so I’m very excited to go to Mayo. I’m going to bombard them because I have a whole list of questions! LOL!!

1 Like


I was first diagnosed in 1978 (no that is not a typo) and no one in Michigan even knew what it was. Now, more people than not at least know a little bit about it.


I had a PAVM which caused a stroke nearly 5 years ago. I had no idea what a PAVM was and after testing it was discovered that I had HHT. This can be confirmed via blood test, but the results take a few weeks to get back and confirm. Do you get frequent nosebleeds? That is the most common sign of HHT, although I never get nosebleeds and yet still have HHT. Based on my understanding, I believe that the majority of people with PAVMs end up having HHT, but the two are not always connected. There are many HHT Centers of Excellence in the U.S. and Mayo Clinic is one of them. You may want to schedule an appt with an HHT expert while you are there - or at least get tested for HHT. The treatment of PAVMs is fairly straight forward these days - I had mine coiled and was in and out of the hospital on the same day. I wish that I had known about my PAVM prior to my stroke since it was very treatable.

After I had my third stroke, they figured out it was caused from the multiple PAVM’s. I have had nose bleeds for years; not just frequent, but they are full on “run with your hands cupped because I’ll ruin the carpet” type. Had no idea that wasn’t normal until I had one in front of someone that totally freaked out! LOL!!! I wish they had known about the coil, as I had almost half of my lungs removed, but I’m relieved to know if I have another one, that it can be a much easier fix!!! Thank you so much for the advice, as I would definitely like to know if I have HHT so I can caution my sons.

1 Like

If you have PAVMs and nosebleeds like that then my guess is that you have HHT… but a blood test can tell you for sure. If you have HHT, then there is a 50/50 chance that your children have it as well. It is passed down from parents and does not skip a generation. Did either your mother or father have nosebleeds? After I learned that I had HHT, my brother also tested positive. He then got scanned for PAVMs, etc. and he has no PAVMs. My two boys also tested positive. One has PAVMs that will be treated once he is past puberty. HHT is a strange disease as the symptoms can be wide ranging and vary considerably from person to person. If I didn’t have my stroke, I would still likely never know about HHT as I have no symptoms and it never really impacted my health.

I’m very thankful for your information and recommendations because I think it’s important for my kids to know; especially if it’s that likely I could pass it down. I don’t remember my parents having nose bleeds, but they’ve both been gone quite some time. I remember the lung surgeon in Seattle telling me that it was refreshing to see someone with PAVM’s that was alive and breathing because so many bled out before they found diagnose it. But that as almost 35 years ago. It sounds like they know do much more now!!!

Yes, I believe that the medical technology has come a long way in this area. I had two PAVMs coiled and was awake and could watch the entire process happen on a TV screen above me - pretty amazing. As both of my parents are deceased, I did not know which parent I inherited the HHT from. As a result, I made sure all aunts and uncles were tested as well. If there is any history of nosebleeds on either side of your family that could be the giveaway as to where the HHT (assuming you have it) came from. The CureHHT website has a lot of great info. Here is a link:

Signs and Symptoms - CureHHT

Thank you so much!! I’m not sure if anyone else in my family has bloody noses. I know my son doesn’t because when he saw that, out of the blue, my nose started bleeding badly, he freaked out…and he’s 43!! It was a bit of a shock as I had always just assumed that was normal and it happened to everyone. Lol!

A post was split to a new topic: Hi I’m Matthew

Hello, @ToughCall and @TerriK it’s good you found us and even better that you found each other.

As John said earlier, we have an area where we have quite a collection of PAVM and HHT stories / members and I hope that by clubbing together you can help each other. I do think the HHT site that is linked above is also very helpful.

By the way, I agree with @ToughCall that nosebleeds + multiple PAVMs seems almost inevitably HHT to me.

Very best wishes,


This group has been more helpful than the 11 doctors I’ve seen in the last three months! I’m very thankful for this site!!! I don’t mean any disrespect to the doctors, but none of them know anything more than what a PAVM is. I checked out the website above and realized that I have been diagnosed with every issue that the website shows are the most mis-diagnosed! It makes me feel more confident (normal?) about my healthcare than I have for years!!!

Thank you so much!!!

1 Like

Thank you all so much! I wish I could convey how much being able to connect with others has helped my emotional health! The information and support here has done wonders for my psyche!!! I wouldn’t wish this on any of you, but I don’t feel so alone, or frustrated because of the lack of medical care and understanding. Again, THANK YOU!!!

Best wishes to all of you!!!