Hi there,
we are very new in the AVM world and ours hasn’t yet been treated.
It’s grade 2-3 in the left parietal lobe.
Now over the last two months since the first big seizure, my son has had two nose bleeds. One very small, one bigger (after a sneeze). He does also have Covid at the moment so it may be connected to that (we are also pursuing HHT testing just in case) but I wanted to check just how frequently people with active AVMs have nose bleeds on the same side. Thanks.
P.S. Our neuroradiologist didn’t think the nosebleed would be connected to the AVM.
I haven’t heard anything similar associated to a brain AVM, I would certainly think the neuroradiologist opinion is sound. Hopefully the COVID is not bad for him, it seems to be having quite the variation in severity to many with the current variants. I know a number of people with minor symptoms who are all vaccinated. Take Care, John
But, in my case the pressure build up caused spinal fluid to come out of my nose < I didn’t know what it was at the time. But, explained my whole symptom time line to the neurosurgeons & they agreed it was from built up pressure on the left side of my brain.
It’s definitely possible for nosebleeds to be connected to an AVM. I don’t know whether a parietal lobe AVM would be in the right area for it to be likely.
As I think you suspect already, one of the signs of HHT is regular nosebleeds. However it could be neither of these and be completely unconnected.
We do have a couple of members here with Wyburn Mason syndrome, one of whom I know has regular nosebleeds and I would say members with a facial AVM are more prone to nosebleeds.
I would think investigations will show up whether there is anything further than the AVM you already know about. We do have a good contingent of HHT members if it does turn into that. But these conditions with AVMs associated are getting rarer and rarer: it is best not to worry about the ridiculously rare before you get a diagnosis.
Thanks John. I haven’t been able to dig out any research or proof on the subject but I have heard from a handful of other parents about it. Whether it’s a coincidence, comorbidity or a link to AVMs located closer to the nose (than my child’s)… I have no clue.
Thanks, Richard. I would like to eliminate HHT though if I am perfectly honest, it’s more for my own peace of mind as we have no reason to suspect it on either side of the family so fingers crossed that it is just “one of those things” (hopefully never to happen again).
I’ve not heard of the Wyburn Mason syndrome before, I will check it out, thanks!
Wyburn Mason is ridiculously rare (like one in 70 million) so very unlikely. So far as I know, I’d expect vision deficits to be linked to it, so I think you would know about other issues already.
When my daughter was a toddler she would get crazy nosebleeds. When we asked the ent he said he didn’t think there was any connection between the avm and nosebleeds
Now that I think about it, when I was young(12 and under or so), I did get quite a few nose bleeds - fairly heavy ones from what I can recall. I remember going to the nurses office for em a solid handful of times or more.
It’s all history now - I never even had a clue that I had an AVM, let alone of it somehow was the cause.
Just to tag on here, Ms. Marianne Clancy, President of CureHHT, (www.curehht.org) runs the orgination which is a patient support forum for those with HHT (hereditary homogenous teleglantsia). In speaking with her and her organization, those who have HHT, have AVM. But not all who have AVM have HHT. It is a type of disorder but not all AVM posessors have HHT. If you have HHT, might check them out. If not, at least you found AVM Survivors! Also, check out the Brain Aneurysm foundation (https://www.bafound.org/). For the United States, they have a state by state organization that may be of help to you. Blessings as you continue!
I had the same question nine years ago when my AVM in my brain ruptured causing a brain haemorrhage. I had nosebleeds for 50 years. As soon as my AVM ruptured and for the last nine years I have had no nosebleeds!! The medics all gave me the same advice but there was no connection between AVMs and nosebleeds,But it is very clear to me that that is not true. My AVM was in the lower left of my brain, and that controls for my occipital lobe, and I have been left visually impaired.
Oh wow, that is super interesting and it feels like it might be worth someone doing research on the subject as it appears to be more common that doctors seem to realise. Same nostril as side of brain where your AVM was?
Sorry to hear that you are visually impaired and hope your AVM is gone now.
Don’t consider this a medical advice because I am certainly no doctor, but in “Malformation: when bad things happen to the right kind of people” I wrote about this. Its available on Barnes and Noble, Amazon, and other websites. I wrote it as a sort of compilation of over 20 years of information on all the things I wish I had known for the next generation of folks. Its also available from www.mymalformation.com (my website). This isn’t so much a sales plug as it is one beggar telling another beggar where to find food! Blessings as you continue!
Hi Random beggar,
Yes it’s really interesting isn’t it, that none of the numerous medics I have seen, want to admit there might be a connection? It’s very odd if you ask me?
Yes I’m AVM clear now after 2 lots of Gamma knife surgery at Sheffield RHH, Praise the Lord!
No major worries being visually impaired, on the down side I walk into things and I’m no longer able to drive, on the upside I’m rather enjoying being chauffeured around like the Queen of Sheba …
I haven’t actually remembered which side my nosebleeds used to be, but I do recall 4 days before my brain haemorrhage I had a huge nosebleeds , bleeding out of both nostrils and one eye, following a visit to A&E they sent me home without a brain scan sadly, hence a brain haemorrhage 4 days later🙄. Hope this info helps folks .
Kind regards
Smiler Di
Interesting conversation for sure, I’m still not sure anatomy would support the connection. In incidents with traumatic tbi bleeding can sometimes be seen through the ears, and less common the eyes. I’m also a show me the evidence person and listening to personal stories here also reminds me that I don’t really believe in coincidences! I hear multiple folks drawing some potential connections and I take pause of my original opinion! Great conversation, thanks, John.
Embolizations & GK have been just started being used in the last decade or so
Before that, you were signed up for a resect when/if it was caught
It’s like the bleed from my left ear when I was born - were they related? No one knows - back in 1980 USSR, no one even checked
But, after this thread - I do recall fairly heavy nose bleeds prior to 15. Out of nowhere I’d just have a bloody running nose on my desk at school. Like my extreme migraines when I was growing up - they just happened
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