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AVM Survivors Network

My Neurologist/Neurosurgeon says AVM's are not Hereditary

My 4 year old is suffering from migraines and has for 2+ years. I have an AVM that bled before it was discovered. My Neurologist refuses to do a CT because his belief is that AVM's are not hereditary. I have done some research and found some disbelief to this assumption. Anyone have any input on this?

The most common beleif is that AVMs are not hereditary and that the chances of "passing it on" to children is purely coincidental. However, there have been some doctors that beleive there are two types of AVM, those that are hereditary and those that are just a complete fluke in the development at the fetal stage. The jury is still out, so the best chance you will have of having your son scanned is to find a neurologist or vascular surgeon that beleives that some AVMs can be passed in the genes.

You may want to pass this on to your neurologist…
http://hht.org/
And…
http://www.avmsurvivors.org/forum/topics/are-avms-hereditary
And this members’s profile page…
http://www.avmsurvivors.org/profile/ChristineBolender
We do have identical twins on here…one has an AVM and the other twin does not. AVMs only occur in about 1% of the population. Not enough info known.
I was told it was not hereditary…then found out a first cousin had a pulmonary AVM!

Hello Candiee
What about your childs reg Doctor can they order a CT? I would think a child with head pain that the reg doctor would be worried enough to order a CT or MRI- Doctors always think they know best but our bodies are the ones that need to be heard. I would try with your childs reg doctor and if they wont I would go to emergency. Its a simple test to have peace of mind
Angela

Hi Candiee,

I have Hereditary Hemorrhagic Telangectasia, (HHT) which usually starts as nose
bleeds,in which the smaller arteries/veins do not have capillaries between them either; they are just smaller. ( telangectasies) The AVMs in our brains are the same. They do not have capillaries between the arteries or veins. They are bigger so that's why they are called AVM's. My brother and sister also have HHT. My brother had a PAVM removed, and my sister had an AVM bleed. I was told that more than likely we were born with the brain AVMs. Barbara's link below for the HHT foundation below is a very helpful link. If you have any questions, please ask. I will help you with whatever I can.

My family is currently being investigated for HHT. Our 11 year son also has an AVM (possibly a CM) in his brain. I think its worth looking into.

Yes, definitely look into the links that Barbara provided (thanks Barbara). HHT is also rare and also difficult to get a doctor to order a test for. I was also told that AVMs are not hereditary, however my aunt (mother's sister) also had an AVM. More research is definitely needed!

Jami, if you don't mind would you please tell me how you were diagnosed with HHT? I know it's a blood test and they do genetic counseling, etc. My youngest daughter has frequent nose bleeds also which scares the hell out of me. I took her to the pediatrician, specifically telling them when I made the appointment that I wanted to discuss HHT. Of course when we went to our appointment the doctor has no knowledge of my concern and knew nothing about HHT. She did promise to "look in to it". She called me back several days later saying that I had nothing to worry about. So I wonder, did you have other symptoms besides nose bleeds that led to you being tested?

Thanks everyone for all the feedback! I definitely think that more research is needed. I think that many people with AVM's go their entire life never knowing, especially because they can happen any where in the body. They don't just go scanning around for nothing. My biggest fright with my son getting the CT or MRI scan is the radiation exposure, him having to be put to sleep, and the dye that they have to inject and the effect that it might have on his little body. He is only 4 years old, and if it is not needed, I'd rather not do it. But, if he has an AVM in his brain I'd rather catch it before it bursts like mine did. My embolization/coil was not effective, my gamma/cyber knife radiation has so far not been effective, open brain surgery is my last option. I believe if I would have found my AVM before it burst these treatments would have been more successful.

At his age, I would worry about the risk of the CT being more worrisome than the risk of AVM since the belief is that they are congenital (formed in the womb). migrains are hereditary, and most boys 'grow out' of migraines post-puberty. That's why over 80% migraine sufferes are women. Be well, and never hurts to get a second opinion.

When we did testing we chose MRI instead of CTscan because of the radiation factor. I stayed with him to keep him calm and still. It showed up very clearly with minimal trauma to him.

Hi Trish! I am so sorry to just now be getting back to you! I tried to do this via my phone, but for some reason it didn't go through.

I will try to make my story short.

As I stated above, my siblings have it and I'm pretty sure we inherited it from my mom. She gets nosebleeds, but not too badly.

I didn't start getting nosebleeds until my 30's. During this time, my sister was undergoing treatment by an ENT who discovered her"abnormal" nose veins as he also did mine at a later time. I sorta just let it go thinking that there wasn't much more to it. However, I found out differently when my sister started needing blood transfusions, had a brain AVM burst, blood clots in her legs, etc...My brother was found to have had a pulmonary AVM which was embolized.

Last year, I found a new family doctor who thought that I may have had MS due to some symptoms, etc..so she ordered the MRI looking for MS. I do not have MS, ( Thank God.) but, the AVM was found. I started to get concerned, of course.

I found the website: hht.org and joined. I found out soooooo much and realized that this hereditary disease is not simple; in fact, as you mentioned, most doctors don't have a clue what it even is. On the website I found The University of Pennsylvania in Philadelphia to be one of the few HHT specialty treatments in America. I called a number I found on the site to get started with my appointment. I had a saliva test done for the genetic test, which I saw a Geneticist for my first appt. when I was there who explained everything about the testing, what they look for, etc...That same day, I had a bubble echo done which entails having an IV with saline put into your lungs to check for bubbles, which would indicate a pulmonary AVM. I had a few tiny bubbles. So, to be sure...I had a CT scan done the following morning which nothing was found. Later, that afternoon, I saw Dr. Scott Tretola who is an Interventional Radiologist. He discussed my tests, etc... He seems to think that I may have very tiny PAVMs or none at all. I am to go back in five years. Now, had I had any PAVMs, he was going to do an embolization that same day.

I was supposed to go back to see Dr. Erik Zager about my MRI, but I haven't been able to make the trip due to money reasons, etc...So....I was lucky enough to have his wonderful P.A. call me and recommend a couple of doctors in Pittsburgh. I chose Dr. L. Dade. Lunsford at the University of Pittsburgh Medical Center. His partner was another one that was recommended.

( I am sorry, I can't remember his name at the moment.)

I went to see Dr. Lunsford two weeks ago. He wants to do an angiogram and Gamma Knife on the 2nd of March.

I hope that was helpful. Please check out the hht.org website for a ton of info...It's been a great help to me. Good Luck! Hugs!