I agree. Being a rare condition, it will be even more difficult to find any kind of connection (and unlikely to be a priority for researchers to investigate).
yes forgot to mention unique and “rare” and I will add since there is no money to be made by those research…
The real challange about this uncertainty starts about the risk of not doing any procedure at all, when there is no current imlications or while somone wants to become pregnant.
We do have a bunch of people here who have brain and/or pelvic/uterine AVMs who have successfully had one or more pregnancies but it does need the doctor, fully aware of the circumstances of each individual patient to be able to advise as to the risks.
It is a very difficult condition.
I also agree with you in particular about how much this site can support you, encourage you (with examples of good news) and also seriously worry you or discourage you (with examples that are clearly frightening). When I was untreated and worrying about just how big my brain AVM was – how much of my brain had been taken over by it – I found myself encouraged and frightened in about equal measure. So I think you’re right to learn things yourself and filter what you share with your daughter. I also think this is why doctors (neurosurgeons) are reticent to share much detail as well: it doesn’t always help to know some of the detail.
Very best wishes,
Richard
Thank you so much about your encouraging words of support.
I read all the posts on this forum that you mentioned about pregnancy, which indeed made me much more comfortable to come to the same conclusion you just mentioned.
Indeed, I just advised the same to someone in our community that his wife also has an AVM (ruptured twice, the second time during pregnancy, but did not know to be careful from stress and she had a very stressful day that day) and we befriended in result of the above. I did advise him to get an opinion of 3 famous well known neurosurgeons (known for being more lenient about getting pregnant) as well to go live near the hospital (where his neurosurgeon is practicing) during the year of pregnancy, this way he reduces even more the risk.
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Aren’t fathers the sweetest?
I lost mine while pregnant, I was 27 at the time and it was at the start of the pandemic .I was unaware of the AVM and all went well despite having anxiety etc…I did have an emergency C section so i didn’t have any problems with ruptures…Is your daughter thinking of a treatment?
@bettybo I’ve had Covid twice in the past 3 months. Like you, the first infection was tougher and, like the vaccines, it messed up my gut. Not for a day or two. For years after. The second infection was very light in respiratory symptoms, but my gut got even worse so I knew it’s covid again. Then about 6 days after onset of really light respiratory symptoms, my pelvic pain worsened drastically. I have a partially treated pelvic AVM. We did a CT scan and I’m still waiting to discuss this with my docs, but following imaging they said the AVM is dumping blood into my pelvis and we need a procedure. Some of the symptoms that had resolved on the first AVM embolisation came back so I know the AVM grew. Given that Covid wreaked absolute havoc on my body: gut destroyed, an autoimmune skin condition that had been in remission for over a decade, and now vaginal infections, I’m pretty sure it was covid that worsened my AVM. If you search for medical literature, you will see many reports of AVM bleeding on Covid infections. I suspect in my case an iron infusion that raised my low ferritin drastically might have caused oxidative stress and likely helped with covid viral replication. Maybe that’s why these many and serious long covid developments. Sadly, I’m not a candidate for vaccination in the UK. Vaccines also messed my system, although nowhere near the extent of Covid.
Hello so sorry for what you re going through…
I don’t know what we can do about the COVID thing,it really seems like it makes everything worse!
Let as know what the doctors told you when you have the chance