Hey everyone, hope you’re all doing good. I’m 18 years old and I was diagnosed with a facial avm less than a year ago. It’s located on my right cheek and touches the nerves in my brain. Because it’s defuse, it’s impossible to remove it. Ive had two surgeries on it (one embolization and one incision to cut out a growth from a wound as my skin does not heal properly on top of it). I suffer from two problems: asymmetry of the face and hearing the pulsations of the avm when it’s quiet. The facial disfiguration is a huge confidence killer. The sounds that it produces (as it’s right next to my ear) often keep me awake at night. When I look closely in the mirror, i can see my cheek moving. I’m not looking for any advice but it would be nice to hear from some other people who also suffer from this condition. Thank you all
Hi Z, When I was 14 I had a AVM burst in my brain and had 2 craniotomies to remove it. The scar tissue has caused gran mal seizures ever since.
The operations were old school cutting open the skull and stapling it back together. Shaved head, black eyes, bruising, swelling-- let’s just say I was not a pretty picture and for a 14 year-old wanting to be attractive to girls it didn’t do wonders for my self-esteem/confidence.
I’ve got scars from ear-to-ear-- physical and emotional.
You seem nice and intelligent and it’s okay to ask for help/advice. (I’m not going to offer you any because you said you’re not looking for any.) Welcome here and best wishes, Greg
Welcome to our group! Like Greg, I’m a brain guy who had gamma knife, so a completely different situation for sure but we do share of the challenges of dealing with these things. I think you will hear from some of our facial AVM folks, with many varied experiences. I hope their stories will help you out some. I would suggest that when and if you are comfortable with us here, don’t be shy on asking for suggestions. Many of us have been through the medical wringer, have had a lot of challenges as it is often difficult to navigate. Take Care, John
I definitely didn’t word that right- I honestly don’t know why I wrote that haha. I would appreciate any and all input/advice. Thanks for responding Greg
It’s good to have you join us. I know of at least a couple of guys in a similar situation to you. I hope they may reach out to you.
I can relate on the pulsation front. My AVM was in the back of my head (and actually was strong enough to lift my fingers if I pressed to the back of my head ) but it was flowing into my right transverse sinus and then the sigmoid sinuses past my ears, so I could hear a “whoosh, whoosh” once a second, as you say especially at night.
Initially it was quite quiet and I didn’t think anything of it. Then it clearly got louder. It was through the noise that I became concerned enough to ask the doctor if I had wax in my ears (and was therefore hearing more internally than usual). He said no. But over the ensuing months, it got louder. About 6 months after first noticing the noise, I found an article online about AVMs and went back to see the doc! Mine got noticeably worse over the subsequent year (mine is classified as a Dural Arteriovenous Fistula). By the point a year after I first asked the doctor, I was getting dizzy. Over the final 6 months prior to having surgery, the noise got to the stage where it was properly loud and it was like trying to sleep with the washing machine constantly on pump-out right next to you. Not good at all. Plus, lying down made me even more dizzy. I was about 50 when all this happened.
Hopefully, yours won’t develop at anything like the pace that mine did (I get the impression that mine was unusually rapid) but if you find it getting really loud or giving you other effects, it may be you need the doc to have a further look.
Both of the guys I’ve got in mind have a facial AVM and I’m sure it knocks any of us for six confidence-wise. You’re very young and being your age is difficult anyway: kids pick on people for just anything out of the ordinary. So a couple of thoughts that I hope might help.
There’s a whole bunch of people out there who get picked on in the same way. You might think you’re alone but my experience is that bullying etc happens to most people. It’s definitely really difficult when you have a facial disfigurement of any kind. It gets a lot better as soon as you finish school, especially if you mix with more intelligent folk.
It took me until I was 40 to decide that I didn’t need to earn respect from other people but that I was their equal and I could do anything, hold my head as high as any of those I knew.
The trick, in my view, is to do (2) much sooner than your forties. It takes time to rationalise with yourself that you stand as tall as anyone else but to leave it until you are 40 to decide so is crazy. So don’t do that. Know who you are and what you’re good at. Know the kind of person you are, the standards you set yourself for work or sport or taking care of people or whatever and be confident in yourself that you’re as good as anyone. And see if you can do that somewhere in your twenties because anything else is just a waste of time.
It’s good having you on board!
I don’t have any advice, but just a suggestion. Contact the Boston Childrens Hospital Vascular Anomalies Clinic. I know they have a hematology team that is experimenting with drugs that inhibit the growth of AVM tissue. They do a DNA analysis to match the right drug. Since yours in your face and hard to remove, it might be worth looking into to. I think they even do telehealth for some appointments.
Best of luck.