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AVM Survivors Network

15 year old...No diagnosis - trying to get info on facial avms


#1

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.

  1. 15 is not s normal age to have this show up.
  2. It can’t be AVM because the radiologist didn’t diagnose it on the MRI.
  3. 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!


#2

I am a 33 year old woman living in Philadelphia and was diagnosed with a facial AVM while I was 25 weeks pregnant. My right temple started to swell. It was diagnosed after a night in the hospital by a ENT. He said any easy way to test for an AVM is to put a stethoscope to the area and listen for a “bruit” sound. It is the sound of high blood flow. You should take her to a neurologist. What kind of doctors are looking at her MRIs?


#3

I would think someone other than a radiologist should be looking at her MRI. AVMs don’t just show up. Mine was always there since birth but we don’t know about them until hormones caused by (in my case pregnancy) or possibly in your daughters case, puberty, help them to grow.


#4

So far it’s been radiologist, oncologist, dermatologist. The pediatric dermatologist yesterday suggested a neurologist. As well as a rheumatologist. They will be our next steps. No one has put a stethoscope next to it yet. I will ask about that when we follow up with the pediatric dermatologist. Thank you. :slight_smile:


#5

Right…I have read that hormones can bring it out. So whenever a doctor tells me 15 is an unusual age (that we should have seen it before), I question their knowledge about AVMs. I’m hopeful that more doctors will review the MRI and be able to tell us something. (Maybe at U of Miami grand rounds?) I’m trying to get her to the right doctor. Thank you!


#6

My daughter was born with a facial AVM. She is only 11 month old now. I am so glad you will be talking to Boston. We live is Denver. Dr Orbach from Boston talked to me for 20 mins two weeks. I was told he was the only pediatrician specilized in interventional radiology and neurology in the country. He is very knowledgeable. What I learn from my daughter’s case, everyone’s AVM is very different. I know you must be very worried especially you don’t have a diagnosis and want to do something to treat it but there is nothing you can do. We went through a lot in last 11 months from looking for diagnosis to embolizing after a severe bleeding episode. It is very hard on a mom. Send me messages if you want to chat.


#7

Happy holidays, R!iMoms! It shows you have done some research as you already know more about avms than some of the doctors you've come in contact. We went through the same thing in the beginning, many appointments with info that just didn't make sense. A lot of wasted time and money for on those appts. Don't waste any more time/money on doctors without avm knowledge. Even some ofnthe best hospitals do not have skilled avm doctors. When we arrived at the vascular anomalies Clinic at Children's & John hopkins in DC (top notch hospitals) we were still dealing with confusion. Then we sought Boston, New York, and Little Rock experts. Then the answers started making sense and we could comprehensively make a call on treatment. So you are on the right track getting Boston's opinion. I would also suggest Dr Suen in Little Rock because he is extremely skilled at working on avms involving optical vessels. I'll write more later... Be assured you are already doing well for your daughter. Please don't worry too much now. I've seen avms be gone (still gone after years) in one surgery!


#8

If you will be coming to Miami for an appointment at UM also try to get in with Dr. Italo Linfante at Baptist Miami Cardiac & Vascular Institute, its not far from UM Health systems. Have your daughters MRI sent over to him and see if he can help. When he looked at my CT-A scan, he could see a little something, but couldn't tell exactly what was going on, so he scheduled me for an "angiogram with possible intervention". The day of the angiogram they found 3 extensive AVF's, one dural, one scalp, and one face. They switched me over from from sedation to anesthesia to embolize the AVFs right after they found all three. I was under for 5 hours while he embolized with Onyx. He took great care of me. It was great that they didn't have to do the embolization on a different day from the angiogram. I'm 11 weeks out and feeling much better. Please consider having her scans sent to him. Sometimes it's difficult for them to see whats going on with just ct/mri scans, so they opt for an angio to get in there, see it better, and treat it same day if it can be treated.


#9

Hi and sorry for the delay responding but my computer crashed and I couldn't figure out how to respond on my iphone. I'm hoping to know more soon. I'm so glad to have found this group. Thank you!


#10

Thank you and I'm sorry for the delayed response, but I did see your reply and we have an appointment in Little Rock with Dr. Richter on January 18! I think you're absolutely right that we're wasting our time with doctors who don't know much about AVM. I need to find out if it is or isn't an AVM. "It might be an AVM" isn't getting us anywhere! Thanks for the advice!


#11

Thank you so much for this suggestion! This might be a good option for us. I'm so glad I found this site and others who have had similar experiences!