Was your AVM located behind a birthmark?

Hi, I was born with portwine stain birthmarks on the right side of my head. I was never warned that they could be dangerous. My AVM was located directly behind the largest mark above my right ear. After my AVM hemorage and crainotomy my neurosuregon speculated that the birthmark and AVM were related but said there was no medical evidence of this. I have since found a website www.birthmarks.com that states that all birthmarks are AVMs. Now when i meet people that have birthmarks they get freaked out that they might have an AVM too. Has anyone in the group also got a birthmark in the same location as their AVM? I am speculating that my AVM bled in the womb and the birthmark is coagulated blood from this bleed but no one can verify this for me. I would be really interetsed to know if anyojne else has a visisble birthmark. Thanks and best wishes to all xo

My baby girl also has one on her fore head.

I have a ‘stork bite’ on the back of my neck (my birthmark). My AVM was located in the spinal cord at the T-1, T-2 level.

No one has ever said anything to me about there being a possible connection, but I have wondered about it.

One time my pain Dr. pointed the birthmark out to one of her PAs, and they both kind of nodded at each other. Looking back I can hardly believe I didn’t ask them what they were thinking about it, but there must have been a reason why I didn’t.

I’m always interested in research concerning AVMs and aneurysms, and the answer to the question regarding possible connections between these kinds of birthmarks and these malformations is one I hope our Drs. will be able to give us.

I’ll check out the link you gave Caroline - thanks.

I have a stork bite on the back of my neck and Telangiectasia all over my neck and some on my chest.
My AVM is located in the Right Frontal Lobe of my brain. I had a Right Temporal Lobectomy (6/02).
The doctor at that time Dr. Ingela Danielsson and the surgeon Dr. John Heiss both at the
NINDS at National Instutites of Health, they put in my medical records the patient has a RASH on his neck.
The doctors at the NIH-NINDS were wrong.

Here is a link: http://www.childrenshospital.org/az/Site648/mainpageS648P0.html

Hope this is helpful.

I have portwine stain/birthmark on my left arm and shoulder, my AVM is in my left arm and chest wall. Doctors told my mother that while in the womb I laid on my left side and that was why I had the birthmarks.

Hi Jeff, thanks for the link. this is really interesting. i wish someone had told me years ago that my birthmark was a sign of something more sinister.
thanks everyone for your comments. the doctors can never give you a straight answer so this has helped a lot. thank you.
xo

Jeff said:

I have a stork bite on the back of my neck and Telangiectasia all over my neck and some on my chest.
My AVM is located in the Right Frontal Lobe of my brain. I had a Right Temporal Lobectomy (6/02).
The doctor at that time Dr. Ingela Danielsson and the surgeon Dr. John Heiss both at the
NINDS at National Instutites of Health, they put in my medical records the patient has a RASH on his neck.
The doctors at the NIH-NINDS were wrong.

Here is a link: http://www.childrenshospital.org/az/Site648/mainpageS648P0.html

Hope this is helpful.

Hi Caroline,
My how freaky is that, about birthmarks? I went cold all over when I read your comment as I had a portwine birthmark removed from the back of my neck when I was a baby. I was never told a great deal about it by my parents, except that it was rather large & had to be removed. I will mention it to my neurosurgeon when I next visit to see what he says. I also have polycistic kidneys which my doctor said seems to be rather common with people who have AVMs. Don’t know if anybody elso has this disease also. I will definately check out the website you mentioned & read abou it. I just wish my mum was alive today for me to ask further questions.

I have a birthmark on the left side of my face, though I wasn’t born with it. As I got older, it just started growing from side of the cheek and now up to my forehead. I really didn’t think anything of it. Then last year I was diagnosed with an AVM on the left frontal lobe of my brain. My consultation with the neurosurgeon noticed the “birthmark”, nothing it for himself that maybe there was a correlation. Still I didn’t think anything of it. But today I was also at birthmark.com and the AVM was stated there. Oh my gosh, very weird for me. Realizing that maybe my birthmark was from my AVM is like a “eureka” moment for me.

My parents were told when I was born that my birthmarks were just coagulated blood under the skin and that the only way to treat it was to slice the skin and scrape out the dried blood but that would scar me so they said to wait til i was older and new procedures had been invented. they never said what could have caused the coagulated blood. it was obviously my AVM bleeding in the womb. I have several birthmarks down the right side of my head, face and neck. they are not connected visibily but I worry that there are more AVMs behind the others. I have my one year review wtih my neurosurgeon this month and that will definitely be a question i ask him. I visited a gp not long ago who told me ALL doctors know that birthmarks are AVMS! so why don’t they take precautions? I have had so many doctors look at my birthdmarks since i was born 35 years ago and not one ever suggested a scan. if only they had maybe I would still have all my vision today. but I am still alive and that is what I have to be grateful for when so many are not. I do know that if i meet someone with a prominent birthmark I will advise them to get a scan. thank you everyone for your feedback. wishing you all a happy and healthy AVM free life xo

Riley’s Mom said:

I have a birthmark on the left side of my face, though I wasn’t born with it. As I got older, it just started growing from side of the cheek and now up to my forehead. I really didn’t think anything of it. Then last year I was diagnosed with an AVM on the left frontal lobe of my brain. My consultation with the neurosurgeon noticed the “birthmark”, nothing it for himself that maybe there was a correlation. Still I didn’t think anything of it. But today I was also at birthmark.com and the AVM was stated there. Oh my gosh, very weird for me. Realizing that maybe my birthmark was from my AVM is like a “eureka” moment for me.

@Caroline : i didn’t think Drs knew about the birthmark = AVM’s. Just this one neurosurgeon i mentioned commented on it. Though he seemed unsure. Thanks for the info!

Caroline Viles said:

My parents were told when I was born that my birthmarks were just coagulated blood under the skin and that the only way to treat it was to slice the skin and scrape out the dried blood but that would scar me so they said to wait til i was older and new procedures had been invented. they never said what could have caused the coagulated blood. it was obviously my AVM bleeding in the womb. I have several birthmarks down the right side of my head, face and neck. they are not connected visibily but I worry that there are more AVMs behind the others. I have my one year review wtih my neurosurgeon this month and that will definitely be a question i ask him. I visited a gp not long ago who told me ALL doctors know that birthmarks are AVMS! so why don’t they take precautions? I have had so many doctors look at my birthdmarks since i was born 35 years ago and not one ever suggested a scan. if only they had maybe I would still have all my vision today. but I am still alive and that is what I have to be grateful for when so many are not. I do know that if i meet someone with a prominent birthmark I will advise them to get a scan. thank you everyone for your feedback. wishing you all a happy and healthy AVM free life xo

Riley’s Mom said:
I have a birthmark on the left side of my face, though I wasn’t born with it. As I got older, it just started growing from side of the cheek and now up to my forehead. I really didn’t think anything of it. Then last year I was diagnosed with an AVM on the left frontal lobe of my brain. My consultation with the neurosurgeon noticed the “birthmark”, nothing it for himself that maybe there was a correlation. Still I didn’t think anything of it. But today I was also at birthmark.com and the AVM was stated there. Oh my gosh, very weird for me. Realizing that maybe my birthmark was from my AVM is like a “eureka” moment for me.

Didn’t have a visible birthmark but the doctors described the avm to me as being like a birthmark in the brain, not sure if its related but I also have a small birth defect or opening between the nostrils. I was just wondering if anyone else with an avm has had this?or heard of it thanks:)

Hello, I have two daughters. Both of which have head or neck birthmarks. One has an AVM of the neck, check and brain stem. The other has a giant cyst in her brain and has had to have a shunt. The geneticist at UCLA is doing testing to see if it’s PHACE syndrome. If you have a birthmark and an AVM there is a possibility that is the cause.

OMG Caroline, I can’t believe that, that is amazing. I believe my AVM was caused at birth, by a traumatic one with my mum pushing with me for hours when she wasn’t fully dilated. Funny enough I had prominent birthmark that completely covered my nose and, with age, isn’t so prominent, unless I tan!! This has totally amazed me, and I am definitely going to mention it at my next appointment, the main reason being that I have visible drainage veins on the left-hand side of my nose, in fact, the bottom part of my nose sometimes looks entirely dark purple/black and I have always wondered if there is a connection with my birthmark, this could be an answer! Thanks for sharing.

My 7 month old daughter’s newly diagnosed AVM was first misdiagnosed as a Port Wine Stain at birth. After MRI and arteriogram last week, the interventional radiologist said it wasn’t a port wine stain, but indeed an AVM. I’m still concerned because my daughter also has multiple hemangioma birthmark’s (6) throughout on her external body (cheek, chest, belly, leg and bottom), and 3 of the 6 have shrunk/faded due to propranolol medication 3 X’s a day. I can’t meet with vascular plastic surgeon to discuss his “treatment plan” for her AVM until the end of July, but I’m going to ask if a MRI should be done of her entire body, in case she has more AVMs that are simply asymptomatic–but in the area of the other hemangioma’s, unlike the AVM on her ear which had glaring symptoms from birth (I knew it wasn’t a port wine stain by 2 months, because it became very hot, she pulled on it constantly and it had a visible pulse). Sometimes, after looking back on our journey to this diagnosis, it seem the obvious is right in front of us and our body’s are telling us “something’s wrong”…I’m trusting my instincts now regarding my daughter’s health—NOT her doctor’s which see her for a 5 minute window once every 3 months!

I'm so glad for you that you have your diagnosis for your daughter! I have a birthmark on my nose, I'm 42 now, and have an AVM in that same area. I've waited a long time to get diagnosed and am so glad for you that this has been spotted. Apparently AVMs quite commonly get overlooked as birthmarks. I hope that all her treatments progress well and she makes good recoveries.

God bless her.

For the love of Burkley said:

My 7 month old daughter's newly diagnosed AVM was first misdiagnosed as a Port Wine Stain at birth. After MRI and arteriogram last week, the interventional radiologist said it wasn't a port wine stain, but indeed an AVM. I'm still concerned because my daughter also has multiple hemangioma birthmark's (6) throughout on her external body (cheek, chest, belly, leg and bottom), and 3 of the 6 have shrunk/faded due to propranolol medication 3 X's a day. I can't meet with vascular plastic surgeon to discuss his "treatment plan" for her AVM until the end of July, but I'm going to ask if a MRI should be done of her entire body, in case she has more AVMs that are simply asymptomatic--but in the area of the other hemangioma's, unlike the AVM on her ear which had glaring symptoms from birth (I knew it wasn't a port wine stain by 2 months, because it became very hot, she pulled on it constantly and it had a visible pulse). Sometimes, after looking back on our journey to this diagnosis, it seem the obvious is right in front of us and our body's are telling us "something's wrong"....I'm trusting my instincts now regarding my daughter's health---NOT her doctor's which see her for a 5 minute window once every 3 months!

Hi, my 8 year old son suffered a haemmorhage due to an AVM on 1st April this year. It was located in the left temporal lobe. The doctors asked me about birthmarks etc. I pointed to the tip of his craniotomy scar, where he has a large round birth mark, called a sebaceous naevus. The doctor said it was interesting that it was right above the site of the bleed - but unlikely to be connected as it isnt a strawberry birthmark. I remain unconvinced, and have often wondered if there is a connection.

But by that logic, wowuldn’t all people have a birthmark somewhere, since the fetus has to lie on some part of the body? Sometimes even doctors say silly things.

Irma said:

I have portwine stain/birthmark on my left arm and shoulder, my AVM is in my left arm and chest wall. Doctors told my mother that while in the womb I laid on my left side and that was why I had the birthmarks.

My Jaela does have a birthmark over her AVM.

I am astonished by this! My son was born with a port wine stain coming down from the top of the right side of his forehead down below his eye ( which has faded alot). But sure enough his AVM has just been diagnosed in the right frontal lobe. Which is actually exacyly where his headaches have been. I just dont understand how the medical professionals can not officially link these two issues!?? Just reading all these stories it is so clear that there is a correlation!

Here is another story of AVM connected with birthmarks: http://stu.westga.edu/~wmaples/marcella_kaye.html

The real question is whether the "portwine stains" are actually AVMs requiring treatment. That's why angiograms are so important.