An introduction

Hi everyone,

My name is Kayla and I’m pretty new to all of this… I was just diagnosed in October, though my AVM is a problem that’s been plaguing me all my life. It surfaced when I was very young, showing itself as a red blotch below my left eye. My doctor said it was just a birth mark and not to worry, but it got progressively worse as life went on, and eventually morphed into this bulging and swollen pulsating vein in between my nose and my eye, curling around the eye and trailing down the left side of my face. The redness and puffiness also increased and expanded with the vein.

I saw many doctors and it took months before I finally found a doctor who could give me a diagnosis. Now, I’m having a hard time finding a doctor willing to treat it. As of now, I have an appointment for a consultation with a plastic surgeon next month, and a CAT scan this Friday. =/

I’m not sure where this will all lead to, but I’m hoping for the best. :slight_smile: I am very happy to have found this website, reading all these stories makes me feel less alone in the world and it’s good to have people who understand.

Welcome to the group.

It would seem to me that the Drs would need to fix the source of the AVM before doing plastic surgery, but what do I know…

I wish you well.

Ron, KS

Now that they have finally diagnosed the problem, there’s hope for fixing it! :slight_smile: I never knew that I had an AVM on my brain until it bled…so it’s good that you know how to proceed. Good luck to you…I will keep you in my prayers. And if you have any questions as you go through this, count on the folks on this site to help you out. If any of us have experienced what you’re going through, we always try to help. Welcome to the AVM Survivors family.

Kayla my daughter is 13 and has a facial avm…you cant just consult with a doctor that doesnt treat these conditions on a regular basis or they could make it much worse…please go slow and dont listen to a plastic surgeon at this point…there is a few doctors that deal with facial avms…dr mulliken in boston…dr. waner in new york and dr yakes in colorado…please find shalon on here and speak with her…im sure she will back what i am saying…hang in there…you will get through it all…sherri

Thank you all for your comments. I am definitely trying to find the best options at the moment, but they are so limited due to my insurance. The consultation with the plastic surgeon is simply that - a consultation. If he doesn’t know how to treat it, maybe he knows someone that can. :slight_smile:

Hi Maddysmom

I think I’ve seen one or two of your posts on birthmark.org…here saying hi and Happy Thanksgiving from Cyprus…totally agree with your advice to Kayla and would like to add Dr James Suen at University of Arkansas to your list of capable and experienced doctors , he taught Dr Waner…this is such a great site…like yourself everyone is so supportive…trusting Kayla will find the doctor she feels comfortable with…just sent her a message…take care for now Maddysmom :slight_smile:

Maddysmom said:

Kayla my daughter is 13 and has a facial avm…you cant just consult with a doctor that doesnt treat these conditions on a regular basis or they could make it much worse…please go slow and dont listen to a plastic surgeon at this point…there is a few doctors that deal with facial avms…dr mulliken in boston…dr. waner in new york and dr yakes in colorado…please find shalon on here and speak with her…im sure she will back what i am saying…hang in there…you will get through it all…sherri

Hi Kayla

It’s Soteris again, I added to your discusion on 24th Nov…I am 48 British male born with avm on right cheek and lip…only a few centers/doctors have the skill, knowledge and experience to tackle facial avms such as Dr Wayne Yakes (Interventional Radiologist) in Colorado … Dr James Suen (surgeon) at University of Arkansas Medical Services… Dr John Mulliken (surgeon) and Dr Darren Orbach (Neuro/Interventional Radiologist) both at Boston Children’s Hospital. (they see adults)… Dr Berenstein (Neuro/Interventional Radiologist) and Dr Milton Waner (surgeon)in NYC, who I both saw…Dr Patricia Burrows in Texas and Dr Orhan Konez in Ohio who are both IInterventional Radiologists…and there are a few more experts in the USA… http://www.novanews.org/resources/physicians/physicians-and-centers-in-the-usa…http://birthmark.org/node/47… as per my earlier discussion with Laura regarding her brother, as a lay person I am not in a position to say who to see because your choice of the surgeon and/or radiologist will usually be determined by your financial/insurance situation and of course who you feel comfortable with…my advice, as it was to Laura, is to contact all or some of these experts mentioned with a set email explaining your case with photos for them to either advise and/or recommend an expert in your area… or even for them to agree, on your request, to see/treat you themselves…those I mentioned are all avm experts and experienced…USA is so far ahead of the UK in dealing with these conditions…best wishes, Soteris

I would only add to Soteris post that if you have a one page diagnosis letter from your local doctor or Neuro-whatever, I would include that. When the teams have a medically written diagnosis, it gives them more to work with than “I have a big AVM in my head”.

Or if you want, simply refer to the Dr’s name and extract what he said about your AVM.

Hope this helps.
Ron, KS



Soteris Christodoulou said:
Hi Kayla

It's Soteris again, I added to your discusion on 24th Nov....I am 48 British male born with avm on right cheek and lip.....only a few centers/doctors have the skill, knowledge and experience to tackle facial avms such as Dr Wayne Yakes (Interventional Radiologist) in Colorado ... Dr James Suen (surgeon) at University of Arkansas Medical Services.... Dr John Mulliken (surgeon) and Dr Darren Orbach (Neuro/Interventional Radiologist) both at Boston Children's Hospital. (they see adults)... Dr Berenstein (Neuro/Interventional Radiologist) and Dr Milton Waner (surgeon)in NYC, who I both saw....Dr Patricia Burrows in Texas and Dr Orhan Konez in Ohio who are both IInterventional Radiologists...and there are a few more experts in the USA... http://www.novanews.org/resources/physicians/physicians-and-centers............ as per my earlier discussion with Laura regarding her brother, as a lay person I am not in a position to say who to see because your choice of the surgeon and/or radiologist will usually be determined by your financial/insurance situation and of course who you feel comfortable with...my advice, as it was to Laura, is to contact all or some of these experts mentioned with a set email explaining your case with photos for them to either advise and/or recommend an expert in your area.... or even for them to agree, on your request, to see/treat you themselves.....those I mentioned are all avm experts and experienced...USA is so far ahead of the UK in dealing with these conditions....best wishes, Soteris

Absolutely Kayla, I agree with Ron to add any written medical/diagnosis/pathology reports from the doctors you’ve seen…or, as Ron also says, if you want, simply refer to the Dr’s name and extract what he said about your AVM. Even though the new doctors usually like to and will do their own tests/scans investigations these earlier reports they find helpful - Soteris :slight_smile:

Hey Kayla,

It would appear that we have the same thing although mine is presented on my left eyelid. It started over 7 years ago when I experienced bleeding from what i thought was my left tear duct. over the years the area became progressively more discoloured (red) and swollen to the point where the shape of my eye is completed distorted ( I can post some pictures if you would like to see these). my lump also has a pulse and is solid to touch. I am receiving treatment under a interventional neuro-radiologist who has already done one embolisation. my lump is fed by two main arteries which he discovered by doing a cerebral angiogram. one of the arteries has been blocked using glue and there was a noticeable difference after the first embolisation. although this has since swollen again my surgeon thinks that once the other artery is blocked then the lump should go without the need for any cosmetic work.

I think it would be useful for you to explore this from a radiological perspective rather than a cosmetic one.

I hope this info is of some use to you

:)

Hi Kayla,

I’m in the same boat as you right now. I’m a 42 year old woman from England (now resident in Canada) and I have had problems for nearly 20 years that have only now been taken seriously because it’s causing a problem with my left eye. I am still waiting on neurosurgeon and neuro-opthalmologist appointments and have no idea what the future holds - it’s all a bit scary. It’s only by chance that I noticed a problem with my eye after years of going backwards and forwards and being told it was my sinuses - and I was very recently diagnosed by an ophthalmologist, who luckily had seen the symptoms once or twice (!) before.

Good luck with any treatment, the advice on here is invaluable but at the end of the day go with your gut and if you aren’t completely sold on one treatment then find out about others!! I really hope that you find someone who can sort out the problem. Take care.