How to deal with the condition

Im Ryan Brown, and just found this site. I’m excited to be able to share my experiances with all of you as well as learn your stories. If you happen to stumble across this page I too have an AVM in a very wierd spot. Its visible in my external left ear fortionately it does not effect my hearing, but is still hard to deal with considering i’m 19 and in school. I have unfortainatly been misdiagnosed and treated with the wrong procedures over and over, and still not completely sure what is going to happen. For those of you who have been diagnosed i’m sure it was not like what i’m about to talk about, but if your experiance was similar then we both can learn from eachother. My experiances and what i’m about to talk about is mostly about dealing with the condition, how to stay strong through it all, and in the rare case your avm is visible how to deal with the ignorant rude people life can sometimes bring you.
I have had more than 20 surgeries met with countless drs, and got the run around more times than I can count. I was first diagnosed with a vascular birthmark and was told that it would go away. After it didnt I was treated with laser surgery which only seemed to worsen the condition while it would grow back, but my parents were told from the surgeons that they need to keep operating. After ten surgeries my parents looked around for new doctors, and we met with someone at the Emory clinic of Atlanta, where I was living at the current time, treated my ear by embolization and sclarotherapy. This really improved the condition of my ear and stopped the thrill of the whooshing blood sound constantly. Being an AVM on the outside of my head it was prone to bleeding. When My AVM bleeds its random and unprovoked. Little scratches would result in a large amount of blood loss and its benign for an active person to deal with. The bleeding would stop for a long time after these surgeries but sometimes avms, are hard to deal with and like cancer will go into remission but grow back. Overall, I had many of these, and it only seemed to be a temporary help, and the final surgery they used a relatively new substance called onyx. My dad relocated my junior year to Tampa, and we explored options down here. I talked with a new Dr. in miami who specializes in my specific condition, and he told me that embolization only should be used in my case as a pre operative thing to quiet the avm before excision, and now I’m going to have that surgery in less than a month.
After all this I learned a lot of things I wish I would have known then to get all that time back. That many surgeries is hard on anyone, and if you come across this my advice is to explore all of your options. You have time commit don’t rush into it. If a little more research had been done, and a lot of the surgeries could have been avoided. Explore all options, and never get discouraged. Drs. have openly told me they wouldn’t feel comfortable operating for lack of experience. Medicine is improving daily while some drs. might not know what they are doing now doesn’t mean someone won’t tommorow. The best mindset for a surgery is stay positive, but although doom and gloom expect the worst outcome that way you won’t be surprised, and like most things in life our fears make things out to be way worse than they really are. Now for those of you plagued by anxiety which is very reasonable just let it go. What’s going to happen is meant to happen and out of your control. You have to live your life no matter what.
The next thing is dealing with the deformity. If you are one of the few like me dealing with the deformity on the outside is hard, but it will make you or your children stronger in life. If you are around someone long enough your deformities arent thought about, and generally until pointed out forgotten. It’s easier said than done, but ignore the crap talk. I’ve gotten it from all angles: peers, teachers, coaches, autority figures etc. Those people are generally self consious themselves, or just very dumb and taken by surprise. Remember you aren’t obligated to answer any question you don’t want too. My ear has never held me back from talking to pretty girls, or making friends, because I didn’t let it. If a girl/boy isn’t going to give you the time of day or judge you because of it they aren’t worth your time.

I wrote this just from my experiences. At the same time I still deal with self consiousness to this day, but the best way to deal with that is to ignore it. As for the surgery process stay strong, and dont let yourself worry. "Worrying is like a rocking chair its something to do, but it won’t get you anywhere."
Like I said in my other post I will be posting pictures of my ear as soon as I get my other computer.

Wow Ryan, thank you for sharing your story/view with us. I believe that many people will gain strength and hope from what you have been through and at the very least the significance of staying positive. i wish you the very best in your upcoming surgery hopefully your last?

good on you well you sound a lot older than 19,q gosh I know also how frustrating things can get but your right you have to stay strong and focused, Im glad you found us all here, chat soon