My Journey (Im new here) :)

Well I would first like to introduce myself. I’m Ryan and I came across this website to talk about my AVM, and all of the things I’ve been through. I guess Im just interested in seeing what everyone else has been through, and also I’d like to give a different perspective to the issue. I have cruised the site a little bit and it seems most of you have AVM’s in your brains. Mine is located on my left external ear, and it is quite rare to my understanding, so here is my story. I’m 19 now, but my AVM started becoming visible after birth. It was a red spot that continued to grow with time. Around the age of 7 when I hit my first growth spurt my ear grew to a huge size. It stuck out very far, and it turned a purplish color, and started to “bubble up” for lack of a better term. My pediatrician told my parents that it was a birth mark, and that it would go away with time. At the age of 10 as it continued to grow it became very clear something needed to be done, so my parents were told to take the “laser” route as it was not yet clear it was an AVM. I did this about 10 times and nothing had happened in fact it had gotten even more swollen, and now with all the cuts from the surgery it started to bleed. My bleeding is different then a lot of yours. I feel no pain or headache, and it will just randomly bleed without warning or if a scab is touched. At this point it was rare, but when it bled it was very hard to clot. So, my parents were given a different doctor who specialized in radiology and embolization. My first surgery taking this route was at the age of 14, and when all was said and done it looked a lot better. I had forgot to mention earlier the thrill that came along with this. I heard a constant whoosh of blood before this surgery in my ear that was quite disturbing. It was very loud, and if you looked close enough you could actually see the pulsation as the ear moved with the woosh if I was sitting still. After this surgery the thrill was gone, and the size had been reduced greatly. Needless to say I was very pleased, but after a few months the thrill kept returning, (but at a much lesser state) the size of my ear continued to grow, and the bleeding was getting worse. The bleeding is what had my parents and I were more worried about than anything. The avm luckily does not enter the ear canal. At a younger age the ear was very uncomfortable the amount of wax and gunk that built up made it hard to hear, because the external bubbles started to cover the canal. From the constant picking of the ear that was inevitable with q tips I had developed cuts in the canal. The amount of blood flow coming to the ear made the cuts harder to heal and very weak so they could easily be taken off, and thus would result in the bleeding. Bleeding lasts all of about 20-30 min, and the intensity would usually be that of a nosebleed but it wouldnt stop. My second to last embolization was the night after an emergeny room trip. I had a random cut on the outside which had never happened unless after surgery, and I had happened to rub against the scab with my finger in my sleep, and my ear started shooting blood. It was as though I had been stabbed, and the blood loss was a lot, but not enough to warrent a transfusion. It wouldnt stop so an ablulance too me to the emergency room where it was wrapped it in a thick gauze, and it helped clot the scratch, but as soon as it was removed the bleeding would start again. All and all I had about 4 more embolizations and 3 embolizations with sclarotherapy. The final embolization involved a new treatment with a substance called onyx. This was supposedly the final solution, and according to my dr. would eliviate any chance of having any other embolizations, and would control the bleeding. It’s been about 2 years since my last embolizations, and the thrill is gone, but the bleeding remains. Since then about a year ago I suffered blunt trauma to my ear which has hardened the puff soft tissue around the ear that bubbled, the back of my ear which was puffy but uneffected by the avm has hardend and it caused numerous damage to the ear through giant scabs and infection. The thrill is completely gone now, but the infection and scabs make it very easy to bleed, and quite benign to deal with on a daily basis. Before the trauma my ear still bled, and it was a very strong bleed compared to the priors, but not as strong as that one night. But one positive is the bleeding since the trauma has been very weak although more common and stops with about 30 seconds of pressure. This made me want to explore my options, and see if anything could be done. I did my research and found a man by the name of Dr. Wolfe. He comes highly accredited and experianced in dealing with external AVM’s and is located in Miami. These AVMs are quite rare so many Drs. are unaware with how to treat it. I am aware of a doctor in Boston, and a few other places out west who are just as recomended, but as I live in Tampa he is my closest option. His name was given to my by Mayo Clinic in Jacksonville, and I visited him about 6 months ago. My surgery is scheduled for June 11th so just a little less than a month from now, and it will be the complete exicision of the AVM, and will leave me with three possible options, but I will not know until after surgery #1 how this will play out which is quite annoying lol. The options are as follows:

1.If he can totally get rid of the AVM I can possibly keep the ear, and have a follow up surgery three days later for a skin graft which would be the ideal situation and allow me to keep a close to normal ear at about an estimated month full recovery.

  1. I might lose the ear, but have one reconstructed. If this is the case this will be a long and painful road, but at the same time much better than my current situation lol, and about a six month recovery which could possibly result in numerous surgeries, and a covering I was told I’d have to wear for about six months.

  2. I will lose the ear and if the reconstructed ear doesn’t take prosthetics will have to be the road I will have to take. Although this bothers me it is still better than my current situation, and might prove to be the longest recovery rate, and difficult to keep up with being that I will need a new prosthetic every few years, and during activities i’ve researched that it can pop off, and some people lose them. Being as im already not one of the most organized people in the world this may be a problem.

I will be sure to update to anyone interested in how the surgery turns out how everything goes and the process/things to deal with. Through all of this I have learned a lot of things most people will never, and I completely empathize with anyone in a similar predicament. I wrote this in order to spread my knowledge on the subject for those who have an AVM in a similar spot or around there face since I haven’t found much info on the subject. I’m glad that I found this site, and my prayers go out to all of you. My next post will be about what I’ve dealt with growing up like this, and how to deal with certain things. I really want to help anyone out there who might be dealing with the same thing so if after this surgery I will have inspired or informed anyone out there whose curious then i’ve done my job. I will also post pictures that I have as soon as I get access to my other computer in a day or two, and in my other discussions.

Thank you,
Ryan Brown

Please read, and share any similar stories or feedback if you have been through this process. I want to help but could also use some if you have seen anything similar.

Ryan, thank you so much for sharing your story with us! I will be praing that your surgery goes wel and that you have as quick and painless a recovery as possible!

By the way,the “thrill” that you’ve been hearing is called a bruit. I have it too. I used to call it my
’heartbeat in my ear", which it basically is…with all those arteries and veins tangled up on your ear and next to mine, we are hearing our pulse!

That was very interesting. You’ve done a great job in helping others and you have a great attitude about it all. These AVM’s are so complicated and the more information we have about them, the easier it is to cope with. What always scares me is the lack of knowledge about them that some doctors have. Definitely one of the most important factors in choosing care!
Good luck with your surgery.

Hey Ryan, I also have an AVM on my left ear and the surrounding scalp. I had it spontaneously hemorrhage a couple of times. Scary. I had a 5 hour embolization and surgery 6 months later. I lost the top half of my left ear and all the tissue surrounding my ear. I also had the whooshing (bruit) sound which successfully drove me nuts. I just had a CTA and 2 years post-op found out the AVM is back all around my ear and in front of my ear in the parotid gland–not good news. I don’t know what I’m going to do. My surgeon doesn’t want to do further surgery because it’s so near the major facial nerve andd because he’s removed so much skin, etc around my ear already. I hope you are doing great. I only know one other person in the US with an ear AVM and we send each other e-mails so I’m glad to hear about you. Kimberly

Amazing story, Ryan. My avm’s are in my lungs and one in my brain. You are an incredibly brave person and I am glad that you shared your story with all of us. You are in my thoughts and prayers - I’m looking forward to hearing how things go…all the very very best of luck with your surgery. /pat