Diffuse Microvascular PAVMs

Has anyone been diagnosed with many micro avms that cannot be embolized?
I am scheduled for a CT Pulmonary Angiogram in September to see what’s going on. My shunt fraction increased from 11% to 19% in the past 2 months, and I’ve been symptomatic (shortness of breath) on slight exertion for 6 months now.
I’m hoping something can be done, but not sure what…
The only things I can find in researching, is a lobectomy. Anyone else experience this?
Thank you so much!!

Hi I had an AVM in my brain 2mm does that count as micro? now Im worried there are more in my brain!

Yes, anything less than 2 mm is micro.
Have they done an MRI recently??? I hope you ask for another soon!

Hi, I recently had my 10th procedure which have included embolizations and angioplasties. Not exactly the same issue with any shortness of breath but my neurosurgeon has gotten to the point where he is contemplating gamma knife or opening me, based on symptoms, bc it’s getting more dangerous. I have many AVMs and he said at this point he is 85% done. He won’t do anything unless necessary now. So I’m waking around with active AVMs just to small and to deep to unnecessarily operate on. I don’t know if this even helps but thought I’d share. Good luck!

Paris, there are a lot of different situations here; not all of them will apply to every member. Multiple microavms generally happen in the GI tract or in the lungs, not in the brain. It is not a typical scenario for our members here. You have already been scanned, I believe, so this is not something you should be worried about.

Thank you Jennifer!
It’s good to know that not all avms HAVE to be operated on

I have similar symptoms and my hands turn blue and arms and legs purple and mottled and I will frequently pass out or get very close to it. I have thousands of micro avms bilateral (no hht or liver disease) and have never had symptoms until 18 months ago after a prolonged infection. It is debilitating. I use to be a distance runner and now have difficulty walking a few blocks. There is no treatment for me at this time. Have you found any answers?

Hi thank you everyone Abigail was your micro avms in your brain I had a CT scan my nerosurgon told me on paper there was no avms but it said that there is a metallic clip also there is encephalomalacia I read that that means that part of my brain is dead Im very scared and confuse if she was sure how come she didn't explain pictures of my CT scan she also put a question mark at the end of when she is talking about this? PLEASE HELP ME BECAUSE I REALY DONT WANT TO HAVE ANYMORE SURGERY ON MY BRAIN thank you

Paris, Abigail does not have brain avms. This discussion is about lung avms. Encephalomalacia is the medical term for localized softening of the brain, often due to a hemorrhage. Are you seeing a neurologist these days? I do not think you should assume that more surgery is indicated.

Abigail, thank you for your response!
We are kind of at a stand still… My pulmonologist put me on beta blockers to slow my heart down, and it helped for about 4 months or so- I was able to walk my daughter to the bus, I could do more, I wasn’t in a brain fog, not as dizzy or tired…
But now, they think I’m developing asthma too- I think they are just clueless what to do now…
Have they seen any of your avms? My dr isn’t giving me much hope for recovery…

Hi Paris, If you have already been scan then this means your doctors are fully aware of what's up there and they will already be working on how to "deal" with it. I'm not 100% sure but I think from my experience the smaller the better :) , So the fact its only 2 mm is good :) . Thanks and take care , Try not to worry as this will only cause stress which is not good for you. Just have faith in the doctors that are managing your case and try relax :) .

Ivy, how are your symptoms now? I just had a ct scan done of my lungs and the avms are ‘nonspecific nodules scattered throughout’, so they could see them. The doctors say there is no treatment for me bc I have thousands in my lungs. Lately my oxygen dips to the low 70’s, my heart rate is high and my hands turn blue. I was stumbling and couldn’t conversate the other day, so I was taken to the ER. My dimer was high and ekg abnormal. They said the ddimer was probably the avms. I wheeze at times, but don’t have asthma. I take albuterol when it is bad. I take birth control to prevent progesterone release (progesterone increases with ovulation and progesterone dilates your blood vessels). I have tried beta blockers, but my blood pressure drops at times, so I cannot tolerate it. My heart rate drops 40 beats at a time suddenly and it hurts and makes me dizzy and I have a lot of chest pain. Do you have chest pain? Mine is excruciating. I would love any advice and I am learning as I go. I am staying positive, but the doctors just cannot tell me how this is going to go, moving forward. I would so appreciate any information.