I’m curious about the connection about nosebleeds and AVMs. I’ve read the nosebleeds/HHT posts on the site, but still have some questions. For anyone who had a brain AVM, did you have frequent nosebleeds as a child? My 11 year old son (who recently had a AVM rupture and subsequent successful craniotomy) has them almost nightly in some periods and at least once a week in other periods. I also as a child had frequent nose bleeds. We have an appt with a geneticist to test for genetic/hereditary conditions that may have contributed to the AVM. The neurosurgeon doesn’t think its likely that we have something like HHT, but I want peace of mind. And in the instance we do have it, we can be proactive and get they family checked for AVMs and have a plan for treatment rather than being caught off guard by a AVM rupture.
Hi.
I’d say it is uncommon for brain AVM patients to suffer nosebleeds. Basically, it depends on the location of the AVM. If it is near the nasal cavity then those people may have nosebleeds instead of a rupture (i.e. it is bleeding out through the nose rather than into the cranium) but I’d say it would be rare – as rare as any of us having a haemorrhage from our AVM.
Facial AVM patients, patients with the AVM near the naval cavity and the one or two patients we have with Wyburn Mason syndrome are more inclined to nosebleeds.
HHT is different. It is a condition which brings bleeding telangiaectasia – which are in the mucous membranes like the lips, the nose, the gums and other places. The bleeding from these may be more frequent: I don’t understand HHT enough: but my observations in this forum are that HHT often brings with it multiple AVMs and quite often AVMs in the lungs. HHT has the complexity of bringing AVMs with it but most people with an AVM do not have HHT, if you follow.
The presence of nosebleeds is an indicator perhaps that investigation for HHT is relevant: it is a genetics test.
I hope this helps a bit. It is wholly my understanding from reading others stories on here and getting a feel for statistics rather than having any qualifications at all, so do not take it as gospel.
Having a diagnosis of HHT is definitely unlikely – it is very rare, rarer than AVMs – but it is good to get checked out.
Best wishes,
Richard
Hi @MW11
I’m so sorry to hear about your son’s experience. I hope he is healing smoothly and sending lots of love to your family as you navigate this uninvited journey. I had a similar experience to your son’s back at the end of 2020/beginning of 2021. I had to have two craniotomies after my AVM ruptured but they were eventually successful in resectioning and obliterating my brain AVM. In the whole ordeal, I was diagnosed with HHT, as was my mom. I had pretty regular and sometimes serious nosebleeds as a young person. Interestingly enough, they stopped in my early 20s (I’m 40 now). My mom on the other hand, at almost 70 yo, has dealt with them nonstop all her life. HHT can present itself in many ways. In our family, my mom doesn’t have any visceral (on tissue) AVMs except for in her nose, which causes the nosebleeds. I, however, had the brain AVM, have a low grade pulmonary AVM, and have plenty of skin telangiectasia. Some of our other family members are pursuing diagnosis as well and have a combination of HHT symptoms. I would highly encourage you to investigate a genetic test for HHT. It’s a simple 5 or 6 gene panel that simply requires a blood draw. In my experience since getting diagnosed, almost all providers (even neurosurgeons!) don’t know much about HHT nor are they eager to provide the disease as an answer to a set of symptoms. www.curehht.org is an AMAZING resource for learning the steps to diagnosis, questions to ask, see latest research. They have been hugely helpful for my family in understanding HHT and getting the right care. I am treated at UCSF which is a “center of excellence,” and my team is super supportive and kind. My family has been participating in some interesting genetic research because we don’t have one of the known HHT genes; they are investigating new genetic sequencing techniques that might show a more detailed look as to what the genetic causes of our family’s HHT might be. Cure HHT helped to connect us with this study, so super super helpful resource! I’m happy to answer any and all HHT questions and can offer my support to you and your family as you move through this next step. Take good care. - Savanna
Thank you so much for your reply. This is very helpful. I’m sorry that your family has this condition and that you had to go through an AVM rupture and craniotomy - it’s so scary, but glad to see you on the other side of it!
Regarding the telegiectasias - did you have them as a child? From what I’ve researched on the internet sometimes the telegiectasias from HHT often don’t show up until you are an adult. Also, what kind of doctor diagnosed your mother’s AVMs in the nose? Was that a geneticist or ENT? Thanks!
Happy to share! Yes, I did have the skin telangiectasia on my hands and probably my mouth when I was a kid. For as long as I can remember they’ve come and gone. For example, I currently have a couple tiny ones (they’re usually just pinpoint or pen tip sized) on my lips, and a few on my fingers. As far as the other visceral AVMs, I don’t know if I had them when I was a child because I wasn’t diagnosed with HHT nor was my brain AVM known to me until I was an adult. My care team assumes they were always there, if that’s any help. In theory, my lung AVM will continue to grow, but unless I have symptoms like shortness of breath, breathing issues, pain, there’s no action needed. My mom was diagnosed by a geneticist and has seen an ENT since then. She had her full diagnostics (MRI, bubble ECHO, bloodwork, GI ultrasound) in 2021-22 and her only presentation of the disease is the nosebleeds. Hope this is helpful and I want to reiterate, I’m more than happy to share and support. You mentioned the most critical piece in your first post, it’s really important for your whole family to have all the information they can have so that an AVM rupture or other complication can be avoided. As you can imagine, I would have loved to have had my health information before I did!