Are AVM's truly congenital?

I wonder about this a lot because people talk about children with avm’s and adults with avm’s but when an adult finds out they have an avm does this mean they just got through childhood without ever having a bleed or diagnosis? Does this question make sense? Did that adult have it at birth and throughout childhood or did it appear somewhere in between? I’ve had Doctors tell me different things. One Doctor said it’s congenital and the other said that I had the propensity for an avm…whatever that means…Mine was discovered at the age of 38 and I was treated for it by embolizations and stereotactic radiation. I wonder if I had it as a child and I just lucked out without having it rupture. ???

I beleive that they are (usually) congenital. Mine was not diagnosed until I started having nearly incapacitating headaches, dizziness, nausea and vision problems. But as more time has passed, I have thought about things that occurred earlier in my life and I am 99% sure than most, if not all of these odd symptoms and instances were directly related to my AVM. As a teen, I would occassionally have an odd sensation go over my body where I’d feel like I was half way numb. I could move, I could feel things, but nothing felt “right” and there was nothing I could do about it. It would usually last for a few hours, then it would leave as quickly as it started. At other times I would kick into a manic state and, while I felt fine, I certainly didn’t feel like myself. Sometimes I’d feel like I was in a dream and would start developing a bad headache. One specific memory is from when I was on my high school football team. We were warming up for a game and while running I started feeling dizzy and nauseated. I sat on the sideline for the whole game and continued feeling quite ill all night.

These symptoms disappeared for quite a few years, then right after graduating from college I started developing symptoms that felt like a combination of all of the things that I used to feel back in high school. It was at this point that I met with a doctor and was diagnosed with my AVM.

I had my surgery when I was 28, had been having symptoms since I was 14, and can only imagine that the AVM had been there my whiole life. Much like cancer and arthritis, it takes time to develop to a point where it can be detected.

You know Jake when I think back to my childhood, teen years and 20’s and 30’s I do see some different signs and or symptoms that might have been there. I remember when I was a kid when I would go to bed I would feel like the bed was at a complete angle, like I was suspended in air sleeping with my feet up top and my head toward the bottom … I remember complaining to my Mom and I had a very hard time getting to sleep at night for awhile. In my 20’s I remember having dizzy spells here and there. I did once take myself to the ER for a really bad spell and they did a catscan on me but nothing showed up. My Neuro told me that often times a CT is not enough and will not detect an AVM. When I was 17 I had a bad car accident and had a concussion. They did a CT then too and of course it wasn’t diagnosed. It wasn’t until Dec 2007 when I had this crazy “episode” that ended up leading me to my diagnosis a year later… The episode happened again 10 months from the first one and that’s when I went to get checked and the avm was discovered.

I have been told by two neuro surgeons they can be caused by trauma…one thinks mine is from a severe concussion I suffered years ago…when I look back though I had many of these symptoms for years…kept getting worse though. Who knows though…I hear so many different conflicting stories… mare

My doctor said they are present from nirth, but they can grow over time. Also, the older you get, themore likely you are to have a bleed…It the constant pressure of blood beating in the AVM that eventually weakens the blood vessels causing them to bleed. As a child, the vessels are not as weak, but weaken over time.

I was told like Mare that my Avm was caused by some type of trauma and Factor V Leiden , a blood clotting disorder .

My AVM was discovered at age 27, only by the grace of god!! I had no symptoms or instances that I could, in hindsight, link to my AVM. I just happened to get in a car accident, suffered what “didn’t” end up being a minor concussion and went to a hospital for an MRI for precautionary purposes. My good doc’s too told me my AVM was most likely congenital.

But for what is worth, from the findings I have read, it seems that the most common AVMs are the Pial AVMs, which are those supplied exclusively by the cerebral/cerebellar arteries and tend to be congenital. The less common AVMs, the Dural AVMs, which are those supplied by the meningeal arteries tend to be caused by trauma, surgery, or thrombosis of an adjacent venous sinus.

Hope that helps!!

Thanks, Ray

i do believe you would have had it at birth,
mine was not discovered until i was 27 after loosing my left field vision…i had suffered miagraines my entire teen years and were told by many doctors that it was my sinus’…i even underwent an operation on my sinus’ to fix the problem of the miagraines but it never worked…so i do believe my avm had been there since birth as these were symptoms…but i also believe avms change and grow over time…by the time my avm was discovered it was 12.5cms doctors said it was on a verge of bleeding and loosing my field vision was the warning sign…so i do believe it had been there since birth but had obviously changed and become bigger in my late 20s to cause the vision loss

It is my understanding that you are born with CAVMs but you can be born with AVMs and or develop them later in life or they could of been micro so small that they take years to become large enough to cause troubles. I have asked the HHT centers this is what I have been told.

I was told by my neurologists (3) that they are congenital.

I had to go look up the word congenital. I assumed it meant “if your parent had something, YOU will have something.” I think I understood it incorrectly.

I think it means you probably had the condition from birth (or conception, or at some point between). What I’ve read and heard suggests that it is congenital in most cases.

At one time, we were told there were two types of AVMs (sorry, can’t recall), and that the kind Chari had was NOT a concern for our kids to develop. We never had our kids tested.

Now, another factor is that these things seem to show up about age 40. Chari said that’s when women start to fall apart (her words, NOT mine!). She endured two natural childbirths with no meds around age 30 with no ill effects and her AVM showed up at 40.

Go figure…

Ron, KS

I was told that mines was congenital.
The avm bled when I was 49, it led to a cerebellum stroke.
I believe that it bled before and it was not detected.
I had various things happen to me through life that I never forgot, I did not seek treatment
for all things, but now I know these seemingly odd experiences was the avm stealing blood.
I had embolization that led to another stroke 4-16-09, not a bleed, but an ischemic stroke.
The doctor wasted glue in my brain arteries while embolizing the avm.
If your hand is that shaky, get another job.
I opted out of the craniotomy after the second stroke and I got GK 7-22-09. I’m waiting for closure of the avm, I had my six month follow up and no edema was seen. I get another MRI in six months.

Peace,
Ameenah

Hey Rachel
I’ve just joined this group. I am a 44 year old female who had an avm burst when I gave birth to my first child. I knew I had something wrong in my brain as a child because I didn’t learn like others did. I struggled with my memory, personality, and intelligence. I covered by being the “class clown.” Before I had surgery, but after the malformation had bled, I suddenly realized that I could read easier (although everyone said I read well) in my head, I was stuttering and stammering. I got my grade 12 but had to do so very carefully. Thank goodness yours didn’t rupture. Raising 2 kids alone after that happens is a very difficult task! Take care, keep in touch.
Kerry

Hi Kerry,
I’m new on this site & I too believe you were born with it. My surgeons tell me this is so, although I don’t recall any incidents in my younger years. I did suffer very bad migrains for many years in my teens, had both my daughters while young. Have had high blood pressure since becoming pregnant with my first daughter at 17 years old. Leading up to the discovery of my AV Fistula in Sept 2008,(I’m now 57) I did notice my memory was on the wane, love doing crosswords etc., answers wouldn’t come to memory, it is very frustrating, it’s still happening now. Whilst in the ICU after my Embo in Nov. 2009 the doctors noted that I have Polycistic Kidneys (I have known since my early 30’s) they also commented that this seemed to be a common thing with people with AVM’s…does anybody else have this disease? Just curious to know. With regard to Alicia’a comment on her sinuses, I have had sinus problems for years & yes I feel it is part of what is happening in my head.

Kerry said:

Hey Rachel
I’ve just joined this group. I am a 44 year old female who had an avm burst when I gave birth to my first child. I knew I had something wrong in my brain as a child because I didn’t learn like others did. I struggled with my memory, personality, and intelligence. I covered by being the “class clown.” Before I had surgery, but after the malformation had bled, I suddenly realized that I could read easier (although everyone said I read well) in my head, I was stuttering and stammering. I got my grade 12 but had to do so very carefully. Thank goodness yours didn’t rupture. Raising 2 kids alone after that happens is a very difficult task! Take care, keep in touch.
Kerry

Hi Rahel - I have a condition called “HHT” that predisposes a person to avm’s in their lungs, brain, spine, etc. My HHT is congenital, my mother had it. Because I was flagged with this condition, doctors scanned me for avm’s. I had multiple avm’s in my lungs and one in my brain…all have resided quietly inside me until now. I am 45, and I am 100% cured. Best of luck to you…/pat

Mine was discovered at 25 years of age! I had no signs or symtoms at all growing up. Until the day after my second son was born and I had a grand mal seizure. So I also wonder myself. Maybe one day we will find out for sure

My doctor told me I had mine since birth and as you get older there more likely to bleed, and if you are pregnant and you have one its even more easy for it to bleed, I went through that experience.

Some AVMs are from birth others are a result of injury. Mine in my back is a result of an injury in the military back in 1982 and wasn’t discovered until 2009.
dale

Dale,
I am going to a med board with the Navy and I have an AVM they refuse to rate. Did you get your’s rated, and if so how? Where is it? Mine is in my brain, and some doctors say it is congenital, some say not, and some say it can be exacerbated by injury. Let me know.

Pamela