Hi there. During an abdominal CT scan for diverticulitis, I had an incidental finding of a 5.6mm PAVM, located in the bottom, back right side, of my right lung. I was referred to a pulmonary specialist and then to a thoracic surgeon that has scheduled a lung resection for May 3rd. Now that I have had time to read and research, I am curious that none of these doctors have mentioned HHT or if I could possibly have multiple AVMs in other parts of my body. All of the doctors I have seen have littlle to no experience with AVMs. Can anyone offer experiences related to this? Do I need to find out if I have other AVMs before I have this major surgery? Also, is it correct that I am at a 40% risk of stroke with this condition? Thank you so much. It is all quite jolting and I’m grateful for this platform for education and support.
I do recommend looking for hht symptoms, such as spots of the skin and frequent nosebleeds - they are the most common. Not all avm patients have hht, but a good portion do. It is however common that if there is an avm in the lungs there may also be one in the brain. I have 2 in my brain and had several in my lungs. I do recommend seeing an hht or avm specialist, if you are able to do so. As for the surgery, it should all go well. the stroke risk isn’t as high as you think. I believe I was told 2% per year, not increasing, just 2 percent at the start of every year till the end. It’s more common to see a brain abscess however if you stay healthy that usually doesn’t happen. Your avm seems to be fairly small, which is good. I wish you good luck on the journey, feel free to contact if you have more questions!
Thank you SO much for responding. When you say spots on the skin, what kind of spots? We seem to have no HHT or AVM specialists in Nashville. I have reached out, just today, to a couple of specialists on line to see if I have any luck with response. Do you have any recommendations for specialists?
By spots on skin, I mean small red dots never bigger than a mm in size.
They usually look something like that.
As for specialists, I live in toronto and am still to be seen by the paediatric specialist, however the regular specialist would be Dr. Marie E. Faughnan.
Quite the trip and I don’t know if international care is the best way to go.
Without knowing all the details, a lung resection seems very extreme. PAVMs larger than 2-3mm can be embolized fairly easily. I had a PAVM (totally unknown to me at the time) that resulted in a stroke in 2016. Shortly thereafter, I had the PAVM embolized - it was a relatively painless experience and I was awake the entire time. You should definitely check with an HHT Center of Excellence. Even if you don’t have HHT, they can put you in touch with docs experienced with treating PAVMs. There is a Center of Excellence in Arkansas and Georgia (see link). Let me know if you have any questions. Good luck!
Please get a 2nd opinion. There are radiology interventionists who treat pulmonary AVMs without invasive surgery and removing a piece of your lung. I have HHT and have had 3 pulmonary AVMs treated by this method. I also had 3 cerebral AVMs (now 2, one was surgically removed).
If there’s an HHT Center of Excellence anywhere within your means to travel to, please go there - or at least go to a large medical facility that has specialists in AVMs.
90% of adults with HHT have chronic nosebleeds - that’s one of the five criteria used to help diagnose. I hope yours is just a solitary AVM. Keep us posted.
HHT.org is a good website.
The pulmonologist and thoracic surgeon here have consulted with their thoracic teams. Their reason for the lung resection as opposed to embolization is the location of the PAVM. Because it is so low and towards the backside of my lung, they say the location will require a long journey through my body and multiple times. They say because it is located on the peripheral of the lung, it will be more simple to go in and simply remove that small portion of the lung.
I would still feel much more comfortable if any of the 13+ doctors that have seen me or my radiology reports, would have mentioned HHT, an HHT Center of Excellence, or the possibility that I may have multiple AVMS.
I can’t thank you enough for your time and information! I will contact the Georgia Center of Excellence tomorrow.
OH! And one more question…is it common for fatigue to be a side effect of these AVMs?
Absolutely. With the thousands of avms I had in my lungs my o2 sats over the past 2 years were resting at 60%.
With low o2 sats you will get out of breath, fatigued, and will feel sick more often than usual. Very common side effect of lung avms, will go away completely when treated.
Glad to see you timed out on waiting for your other posts. The guys have jumped in and told you everything in 24 hours!
I completely agree: get a second opinion but I do understand the people you’ve been seeing have given a reason for the approach. PAVM is rare among rare, so you are definitely in the area of being liable to be less well understood by doctors. I would say not everyone with a PAVM has HHT but there’s definitely a degree of convergence, so when I created the groups on this site, I bunched them together. Definitely worth getting checked out and if you don’t need to rush into surgery, get a second opinion.
Really glad you decided to post again: well done!
I wanted to thank you all for for your insights. The lung resection was cancelled and I am currently scheduled for an embolization on June 2nd. I’m grateful that I found your site and was able to get help throught your experiences and expertise. I tested negative for HHT, so I’m a rare one with a large PAVM and no HHT.
Thank you again!
We certainly have other PAVMers here without HHT. And it’s really good news to pass the HHT test!
Embolisation seems pretty common for PAVM and I haven’t heard a lot of PAVM people saying further repeats etc were necessary, so hopefully it will sort you out.
Very good to hear from you!
Friends, I had my 5.6 PAVM embolized at an HHT Center of Excellence in Augusta, GA on Friday. It went very smoothly and I feel like my energy is back up. I’m trying not to get too excited, but, because of your recommendations, Fvdv, Toasterbowl, and ToughCall, I evaded a lung resection surgery!! I’m grateful! Hoping it sticks!
I’m so glad you didn’t have to have the more invasive surgery and, especially, that you tested negative for HHT!
I felt better immediately after my 3 PAVMs were coiled. That was in 2013. Lately, I’ve been experienced shortness of breath and am concerned others might have grown (I do have HHT). At least they are treatable. Take care!