Hi I have AVM over my left ear and neck. I’ve had several rounds of alcohol embolisations. During one of the procedures a part of my skin was wounded. It took a while to heal but after few months it got infected. It’s been around three years since and wouldn’t just go. It has spread into some 5-6cm’s over my AVM. It itches most of the time especially when sweating and has even bled few times at public. I’ve taken several rounds of medication but it only stays suppressed. Do you guys have any idea how to treat this one?
I just want to say “hi! and welcome to our group”. Albeit your AVM is on your head, the treatment you’ve had is more akin to a facial AVM or even an extremity AVM, so you may find things in common with those groups of people (mine was inside my head, for the most part).
It sounds like your treatment has had some side effect that deserves attention. If you’ve not done so this far, I would go back to your family doctor and ask whether a vascular specialist or dermatologist or even a plastic surgeon needs to have a look at what is going on. Your doctor can take a look and decide who is best to have a look at it.
I have a seborrhoeic keratosis that is near my ear and does some of what you describe, so you may have something like that. It isn’t, so far as I know, related to an AVM at all but is something I have. Your treatment may have exacerbated your skin there for a SK to form.
Talk to your doctor about it.
Hope this helps. All the best,
Hi Richard, thank you for your welcome. In fact, I was also confused by the content of this website as to whether I belong here. Most threads are about cranial AVM while mine is much more superficial. I decided to join the community anyway to see how it works here. It’s great to see so much people supporting each other:)
Answering you, the last time I visited a doctor, he advised us to stop visiting dermatologists and start to consult a surgeon. However the fact is that my treatment has been done by radiologists under the counsel of vascular surgeons. My vascular surgery doctors has explained to me the risk of doing a surgery on my AVM. They shared my MRI details with plastic surgeons and they too you said it was too much of a risk. So the fact is that surgical intervention seems kinda impossible for me.
I was also worrying last night that if your AVM were pretty shallow, that it would be unsafe to tinker with it or near it.
My SK is a bit itchy and so I scratch it, which is when it bleeds, though it is quite brittle, so I think it might bleed of it’s own accord sometimes. I’ve not tried anything to make the skin less dry. Have you tried emollients to keep the skin more supple? Does that help, in terms of itchiness, at least?
Everyone is welcome here. I would always encourage people to join and we do have facial AVM people and extremity AVM people… just not so many. It just means you’re a bit more unique.
Very best wishes
Well actually even sprinkling water could help in resisting the itching. But I apply a cream suggested by my dermatologist twice a day. It does give relief. But the AVM part has a higher temperature than the body temp. So this part always sweats and the ointment would go with it unless I stay indoors. And also, it only has a temporary effect and merely suppresses the issue. So I was hoping for something to treat and cure this infection.
I understand. I’m sure we all want a permanent fix.
I would say a couple of things. 1. Skin creams really do help, so if you’ve got one, I’d use that and get the benefits of it. 2. Skin creams containing paraffin can lead to danger if you smoke and don’t change clothes or bedclothes often enough. There have been a few examples in the UK where people using significant amount of skin creams (e.g. to treat psoriasis) who smoke and who didn’t change/wash either clothes or bedclothes regularly enough have managed to catch fire from their cigarette or pipe. So creams are excellent but there is a care to be had about them that until recently was not warned of.
I’ve used skin creams for years and it is a faff but they are effective, so I feel better when I can be bothered to use them. I do understand it might be much more difficult in a hotter country than the UK!
Very best wishes,
I’ve said I’m already using an ointment(Mupirocin & Bromelaine) so when you say skin cream I hope this would be fine as it probably have some medical advantages over a cream.
I understand the subtleties of your first sentence. I’m sorry if I seem bit impatient for a complete cure, I just believe it to be very less complicated (because it seems epidermal) than the AVM underneath it. But most probably it should be the presence of the AVM that makes this healing impossible. I’ve actually come to a stage where this side-effect of my AVM treatment causes me more concern than the AVM itself. I am more worried that currently I’m having a vacation and I have to join a college for my PG soon.
Also, now I gotta tell you how grateful I’m for your concern in me. I know my issue doesn’t seem very severe, it’s just that I don’t know how to deal with it. Thanks a lot for extending your support Richard:)
I feel you. I have a facial AVM on my nose. One of my surgeries ended up with me having a severe infection.
Here is what worked for me. I cleaned the infected area three times a day and then applied a prescribed ointment. If i started to sweat, whenever I got the chance I would wipe it down again and dry it and apply ointment. I never allowed it to “scab” over, instead kept it wet with the ointment as it allows the skin to grow back. I always kept ointment on me in case I was out and needed to reapply. You could also use gauze on top of the ointment that might help absorb some of the sweat before you get the chance to clean and reapply.
Hope that helps.
I’d like to welcome you to our group. We are here to support and encourage you in your journey. As you can see, we are more than willing to share our experiences with you. Your AVM situation may be different from mine, but we are all AVM Survivor’s and we try to help when and where needed. I wish you the best and once again … Welcome.
Hi Parneish, thanks for your reply. Good to hear that you’ve got over a similar situation. Gives me hope that this wouldn’t be a chronic issue. So you’re suggesting me not to make the skin dry and scab over. I’ll take good note of that. Also, how did your surgery go? Are you still in treatment?
Hi Sharon it’s great to know that you’ve come here to say hi. I’m sorry I didn’t make a good introduction to the community. I feel I should’ve taken to know you guys before discussing my issues. Should I have created a thread to introduce? Should I do it now? How does a new member begin? Please advice me here because I haven’t spent much time to learn this website.
Its absolutely fine how you’ve arrived. You’ve got a pretty rare problem that I’ve no experience of, so I apologise for stating the bloody obvious but I am glad you understand it as comradeship / support rather than the most useful advice. I was trying to encourage you in the use of whatever cream you’ve been recommended. It sounded like you avoid it to some extent because of the heat.
If you want to introduce yourself a bit more, do so in here. If you’d like us to introduce ourselves back, let us know and I’ll start. Part of my view on life is to just encourage others.
I hope you’ll settle in and I am SOOOO glad that @parneish came by and gave you some more useful advice.
Very best wishes,
Yes don’t allow it to dry out, that is causing the itching because it is irritated (which is also why a little water can help the itching as it allows the skin to stretch a bit). Keeping a wound moist, but clean! allows cells to spread and heal. I would wipe clean with cause and then a few drops if the ointment and spread it around cover with gauze when I could.
My AVM will never go away, but I don’t actively seek treatment for it. It is a little bit of an eyesore as its just a largish red bump, but some makeup and sass make up for it. The surgery left me with a large scar and my AVM continued to grow significantly after. In 2013, I had a large amount of the AVM removed and its been good since. Its still growing, but super manageable. I will maybe do another surgery in the next few years. Let me know how keeping the wound moist goes.
Alright Parneish, that’s something I gotta try now. At least as long as I stay home till the vacation is over. I’ll check out and follow up with you. Thank you so much:)
Now as Richard suggested, I’ll say about me. I am Melvin from India. I’ve been through several rounds of embolisations since 9th grade with a few years of break in between. We stopped the procedure last year and I have been taking Sirolimus tablet. But everything we’ve done till now seems pretty much ineffectual. I forced my family to stop treatment because I’m concerned of the rest of my body. I started to believe I’ll have to live with my condition. I used to smile at every inquisitive look since childhood but then it started to overpower me. By the time I reached college I lost a good part of my confidence. Nothing much improved from there and I dread being in a strange community even now. I remember how I used to want to go out and meet new people, but not anymore. I’ve become extremely self conscious among others and would start acting weird. I know I gotta get over it but I’m still in the middle grounds. However, I gotta say I’m blessed with a great family that understands my situation and I know they pain much as I do. But I guess there is nothing more that can be done.
Well I guess that’s it. Anybody wish to join?
It’s good to hear from you!
My experience is completely different, so it shows that where we have these things drives how it affects us.
My AVM is a dural arteriovenous fistula, which simply means that it is in the dura mater covering of my brain – not deep – and I would say it first showed itself in about Sep 2015, when I was nearly 50. I could hear a very faint whoosh with my head on the pillow at night. By the January, it seemed louder so I started Googling to see if it was anything to worry about and all I could find was people being told “tinnitus, put up with it”, so I ignored it. By April 2016, it was definitely louder and I was spurred into more Googling. That time I found “pulsatile tinnitus” and AVMs and frightened myself with my self-diagnosis but everything fitted with how I was.
I went straight to my doctor and she referred me to an ENT man for “tinnitus” initially. He did a bunch of tests of my hearing and said, “so, Mr D. how long have you had tinnitus for?” and I said “oh, I’ve had tinnitus for years. [Like 20 years!] I’m not bothered about that. It’s the pulsatile tinnitus I’m bothered about.”
“Pulsatile tinnitus?” he confirmed.
He went to find a stethoscope and came back and plotted over my head with the stethoscope. When he reached my right transverse sinus, he just stopped and listened. I know you’ve found it, I thought, because you’re not moving. Come to think of it, I had managed to press my phone to the back of my head and record the noise before getting to see him, so I knew I wasn’t imagining the sound.
“Well, Mr D.” he said "You’re my last patient of the day, but my most interesting patient of the day. "
“I’m not sure I want to be your most interesting patient of the day” I replied.
“You have what we call an arteriovenous malformation” was his confirmation and that changed the course of life for the last few years.
I crashed emotionally and as I had to wait for scans and referrals to neurosurgery and then for an embolisation, it got louder and louder and started to affect my balance. It got very noisy, like a washing machine on pump-out all night.
Fortunately, I had an embolisation in Apr '17 and it seems to have fixed it. My head still feels weird sometimes and I’ve got pulse noises at night that I didn’t used to have but I’ve decided to ignore anything else unless I get stronger symptoms showing. The people I met on here helped me to go through the “change curve” and I try to help others as they arrive, just as disturbed by life’s strange and unwelcome turn of events.
In regard to your shyness, I understand that having a big, visible mark is a big deal. It really is, so I completely get that it is a really difficult thing to deal with. But I was a pretty shy person until the age of 40, when I decided I was old enough by then for my opinion to count for something. I decided I was old enough, senior enough and experienced enough to share my views with just about anyone. You know what? I should have thrown those self-imposed shackles off years before.
So, put out of your mind what anyone else thinks and just live your life how you want to get on with it.
I’m very, very ordinary. I don’t stand out anywhere, except when I travelled to India once, and in Antigua, where my skin & hair colour made me the obvious foreigner, so I have no real experience of standing out. But throw off the shackles if you can and as early as you can. Grow your own confidence and make of life what you want. Don’t let your view of others alter how you want to be.
Hope these thoughts help. That’s what I mean by them.
It is good to make your acquaintance!
Good to know your treatment did go well and I hope you don’t have to go through any of it again. You are lucky that you didn’t have to worry of your condition for more than a year. That’s a relatively short span considering you’re in your fifties. But I’m sorry I don’t know much about brain AVM so I have no idea what you guys had to go through. But I sincerely hope you’ll never have to know it again.
I definitely get your advice to me. I’m sure you know I’ve already been having the same feelings. While its easy to imagine such a life, the practical side falls far behind. Infact, if everyone lived a life as they wanted it, how beautiful a world would this be! But there are all types of people and some have to fight their weaknesses harder than others. I never had the determination to excel at anything and all I expected of my life was to be happy and keep my close ones happy. I never learnt to go beyond that. All I’m trying to say is I’d love to get over my mind’s weaknesses but its a terrible battle. I’m sure you getting over your shyness was something you wanted ever since you realised you were shy. Your success wasn’t just due to a sudden thought one random day. The same is with me. I’d love to behave like a normal person but the things that weighed on me really had its toll on me. Won’t saying I’m giving up is the best I can think of now.
Funny thing about the voices in brain that still give you company. I too can hear the blood gushing if I close my ear because of the AVM around it. I’m sure the body can be bit noisy at times and sometimes its good to listen to it and at other times you gotta bear with it. But if it gets too noisy, do complain to a doctor, won’t you?
I feel completely blessed that I didn’t worry about my health until I was 50. That’s an amazing thing that I guess lots of people take for granted. Since your AVM has been present (and worrisome) from an early age, I know you’re in a different situation and it makes life hard. However, if you’re worried about how people look at you, I would encourage you to put such worries to one side if you can. They’re not worth it and simply believing that you are just as good as anyone else (and you are) may be the first step to being more confident.
I’m not saying any of this is easy. I just want to encourage you that these things can be cast off.
Wishing you a great week!
Hi, I might as well introduce myself as well. I am Indian, but I was born in the UK and raised in Canada. I have a AVM on my nose, it is quite noticeable. I know how hard it is when people look at you and stare, I have lived with it all my life as well. I know its can be particularly hard in India. I love staring right back at people until they look away. I shouldn’t be ashamed of who I am and people need to understand that staring is very rude. When possible, I try to tell people what I have, especially little children. They are so innocent, but they LOVE to ask whats wrong with my face lol. I know its difficult, but try not to cut yourself off from the world. There are amazing people out there who will support and love you for you. People used to say things like, “who is going to marry her?” etc. BUT I am happily married to a man who loves me for me, went against everything people said and 10 years later, we are still together. My husband is so Indian typically attractive (he is super tall, very fair etc.), but he fell for me. I have friends that have supported me and been there for me through everything. Try not to give up on people!
Hi friends, thank you again for being here for me. Richard, I clearly understand your advice. I was only trying to say that its a heavy task for me to build my way up, not impossible though. Yeah my self esteem has dipped much over the years and it’ll take time to find myself comfortably placed in a group. I am beginning to work on it because I have no future if I go like this. Your concern in me feels like an elder brother because you’re the first person I got to talk so much here. And btw Richard, I should say you’re a man brimming with humility. I’ve gone through enough threads here and found you desperately trying to extend help almost everywhere. You must be a very contented person in life… That’s the best anyone can ask for.
Dear Parneish, even though you came late I’m happy for your support. Also like Richard you too have fought your tough times and got a lovely family. I hope you don’t have to look back anymore now. You definitely get my issue completely as you know enough of our society. Infact, its more acute in my place. Once I went to mumbai, I was really surprised how noone cares about anyone else and doesn’t even bother to look when they bump into each other. Back here everyone wants to know everything. I too have these inquisitive eyes that keep searching for something that catches the eye when taking a walk. Lot of people keep asking about my condition which is natural to their instinct and perfectly fine. As you suspected I never hate people. In fact, I love to talk with strangers in a one on one situation. I don’t hesitate to explain my condition or anything else. Its when it becomes a group of people that I get overwhelmed. Too many inquisitive eyes and I suddenly feel powerless. I cannot satisfy everyone with an answer so I pretend not seeing them. It actually puts me in a very weird position. Well I don’t really have to look at anyone, but I try to be nice as possible.
Well, despite that, I have few things in mind as the first step to a change. I hope something better happens within one month’s time:)
You’re very kind. I’m just the same as you: an ordinary person. I was welcomed into this community when I was shocked by my diagnosis and encouraged that it was going to be ok. So I just extend the same welcome I received from others. I feel the world could be a better place if more people (outside this community) spent a little time speaking positively to each other each day.
Mumbai is a unique place in many ways but it is the same as London and probably most other metropolitan areas across the globe in that there are just so many people in one place that you cannot stop to take an interest in someone: youd be doing it all day and never actually make it to wherever you were heading. Outside of London, if a person sees you approaching a shop or office door that they’re just passing through, they’ll wait and hold the door open as a small courtesy but that just doesn’t happen in London: as I say, you’d be there all day. Such small courtesies have to be let go.
So I’m happy to encourage you, and anyone else, in the way I know, which is through the magic of the written word. I can’t better what @parneish says. It is wonderful that we are such a wide and diverse community that we can so often find another person who has been through the same things.
Very best wishes,
Thank you Richard. Its great to hear about life elsewhere. I don’t really know enough about people outside my social circle so what you said was enlightening. In fact I hardly know even about India because this is such a diverse country. So like you said it feels good to meet with people globally. Im getting the feeling that what keeps this community together is not our condition but the concern in everyone here. I’ll keep updated of further events.