My daughter was diagnosed Nov 2019 and we’re now embarking on radiostatic surgery on 12/12. MRI/MRAs over time have shown some vascular changes of her large, diffuse cerebral AVM. Unfortunately, last week’s angiogram to update images further caused a tiny stroke. She’s completely fine, but it was an unwelcome surprise to what was supposed to be somewhat routine procedure. My daughter has no symptoms of her AVM as it was discovered incidental to “unrelated” headaches. We have held off as long as possible to give her a normal childhood. She’s now 14 and, well, a typical teenager. I am nervous about the radiation treatment, mostly because I don’t want her to lose the quality of life she’s had until this point, recognizing the even scarier risk of a bleed. I guess the possible bleed seems so abstract against being prescribed Ativan and Keppra for the radiation treatment. That’s all for now, just needed to put this out there. I hope to have good news to share in coming weeks/months. Be well!
As a follow up, I’m grateful to the folks who ask how I’m doing. However, when I check in with myself when asked that question, I find the answer is, “I don’t know.” I’m numb. I’ve carried the emotional load of this for a few years now. I say “load” because the “burden” is what my daughter carries. All the “watchful waiting” has been, for me, “constant worry”–is this headache “the one”, is the shaking a fever or a seizure, is the dizziness something more. Once we decided to move forward with radiation, there was a sense of relief, in a way, but the stroke after angio has reminded me that this brain stuff is very risky. So, I’m trying really hard to have faith in her medical team(s), in their expertise, in their guidance, in their hopeful outlook. The skeptic in me says, “They won’t be the ones standing by every day watching my daughter suffer with a bleed, or seizures, or frequent headaches because we chose to treat.” I’m acutely aware that an untreated AVM can rupture at any time, in any physical environment, at any age with a very high rate of deficits and death. But, again, that seems so abstract for me right now compared to risks of treatment. I guess this is all a very long way of saying, I’m scared. Thanks for being ‘out there’ for me to write to.
I’m sorry she’s needing treatment now. It’s so hard to watch our kids go through these challenges. It’s very challenging to weigh out the risks and benefits, but this one sounds like the decision has been made by her current status.
In terms of the meds, it’s better to avoid seizures and that’s why they’re being proactive with them. Big hugs. This was the same age that my daughter was diagnosed with both epilepsy and idiopathic juvenile arthritis
Sharon from ModSuppport