Hi I am so hopeful to have found this group. The area under my daughter’s right eye started swelling about 3 months ago. It got huge and swollen and then the eye got black. There was bleeding into the eye. That swelling went down but never completely away and has recurred every 1-2 weeks since (although never quite as “bad” as the first time). It is painful and my biggest concern is that it gives her constant double vision and headaches. Blood tests negstive. Biopsy negative. MRI shows something but no one seems to know what.
I have heard AVM as a potential diagnosis from multiple doctors. I am trying very hard to educate myself and AVM makes sense to me. I’ve heard three reasons from doctors who don’t think it’s an AVM. I’d like to know if they’re true.
- 15 is not s normal age to have this show up.
- It can’t be AVM because the radiologist didn’t diagnose it on the MRI.
- AVMs don’t “come and go” like this.
My sense is that most doctors know very little about AVMs. Some will tell me it’s not an AVM but they don’t know what it is. (Irs definitely something!) Othrs say they think it’s an AVM but won’t diagnose it yet.
We are currently scheduled for in-person grand rounds at University of Miami and I have sent all info to Boston Choldrens Hosputal for their remote conferencing.
Any thoughts are appreciated. Thank you!