Avatar universal

AVM and heredity

My son is 11 years old and has a history of unusual headaches.  He has seen a nuerologist for them and had an MRI done when he was 9.  Those headaches were always on the same side and lasted for 10 - 20 min. and hurt really bad.  Shortly before the headaches disappeared (1 yr), he had some bouts of syncope.   His cardiologist labeled him with NCS, and after about 1 yr of that he hasn't had any more syncope episodes.  Now headaches are coming back but are different than the ones he had before.  I'm thinking maybe migraines because he is sensitive to light and sound.  We are in the process of documenting these to figure out what might be going on.  These headaches seem to differ from one time to the next and happen only about 3 - 4 times a month.  My question is this:  We have just found out that his aunt (his dad's sister) has AVM and had a coil put in for an aneurysm a couple days ago.  Another aunt has had 3 aneurysms and we don't know if she has AVM.  Should I be concerned that my son may have inherited this?  We don't know if his dad has it because he has not been tested as of yet.  Would a child this young even show signs of AVM yet?  Since we have never been able to put together the reasons for my sons headaches, I am just trying to gather as much info as I can.  What tests would be recommended and what should I look for as symptoms?  I tried to make a long history short and hope that I put in the most pertinent info. for you.  Thank you.
3 Responses
420324 tn?1203044402
My wife was diagnosed with HHT (Hereditary Hemorrhagic Telangiectasia) in her teens but her family was aware of it since it is a hereditary condition. It was also referred to as OWR (Osler, Weber, Rondue). Her symptoms were always nosebleeds and some of them were very heavy requiring transfusions to replace the blood loss. She was alsoconstantly anemic for the same reason.

Four years ago she was hospitalized for a bowel ischemia and while in recovery, was found to have an AVM in her right lung - a pulmonary stent(coil) was inserted at that time. In 2006, at the age of 66 she suffered a seizure and was transported to the ICU where she had 2 more. These seizures were determined to be the result of a hemorrhaged AVM in the dura on the right side of her brain. She lost the use of her left arm but recovered it after about 2 months of therapy.

The AVMs (Arterio Venous Malformations) are an indication of the problem. They can occur from the lipsand tongue all the way thru the stomach and digestive tract to the anus and can rupture and cause bleeding anywhere.

My point is this - the possibility exists that your family might have HHT if they are experiencing AVMs. The key might be as to whether or not they also experience nosebleeds?? My 2 children have been screened and while my son does not appear to have HHT,my daughter and granddaughter do, with the accompanying nosebleeds.

There are severqal different treatment techniques available depending on where the AVM is located. Fortunately for my wife and me, hers was not IN the brain and was so small that the neurosurgeon recommended against invasive surgery since more harm than good might result. She takes daily anti-seizure meds and so far, has not had any further incidents.

If he indeed has HHT, he should not be given blood thinners such as Coumadin or even Aspirin since it could increase the bleeding if an AVM bursts. The condition should ne noted in his medical records at school and with every doctor he visits. (You'd be surprised at how many Drs have never even heard of it!)

The best advice I can give you is have him screened - Know Thine Enemy!


Avatar universal
Suzie... I second the post above me, your son could have HHT (to be optimistic, he also could be lucky and NOT have it). You talk about a history of vascular problems, is there a history of nose bleeds? It is possible, in a kid so young, that his nose would not be bleeding much. However it is unlikely that a HHT family, has no obvious nosebleeds. There is an unexplained link between migraines and HHT. I have both, as do MANY HHT patients. Luckily, most migraine medicine (except NSAIDS, like aspirin) is safe for HHT patients, some of it even helps with HHT symptoms. (I am on a beta-blocker, even though I don't have high blood pressure... It helps with migraines and keeps my nose bleeds from being so bad)...As said above most doctors know nothing or next to nothing about HHT, so your son's doctor may not know its a possibility or just may not know enough about it to diagnose it. If your son has the gene, he has the disease, but if your husband doesn't carry the gene your son cannot have it either.  Migraines can be related to brain AVM's but they do not have to be... some people (even HHT patients) have migraines without the AVM's in their brain... so don't panic... AVM's can be mistake for aneurisms (I apologize for my spelling)... You need to get your son to an HHT center of excellence, to be tested, if he has the 'markers', or several of them: (I pulled this off the HHT website, for medical professionals)
1. 1. NOSEBLEEDS, spontaneous and recurrent.
2. 2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
3. 3. INTERNAL LESIONS such as
1. Gastrointestinal telangiectasia (with or without bleeding)
2. Pulmonary AVM
3. Hepatic AVM
4. Cerebral AVM
5. Spinal AVM
4. 4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The HHT Diagnosis is:
- Definite if 3 criteria are present
- Possible or suspected if 2 criteria are present
- Unlikely if fewer than 2 criteria are present.

Hope this helps... and I hope his explaination is as simple as he has bad headaches that can be easily fixed!
1389523 tn?1279831189
I have recently been diagnosed with HHT all the other post are correct Migraines can be associated to Lung AVMs I would have him screened for these they can be dangerous! a CT with contrast or bubble study should be done!!! if he has PAVMs or any little red spots on his mouth tongue lips or skin and Nose bleeds PLEASE seek out an HHT treatment center for diagnosis! this is hereditary and is dominant and is passed from parent to child this does not skip a generation as it may seem to because not all people with HHT have the same symptoms! it had to come from either yourself or husband! ask family members if any have had the nose bleeds MILD or even severe! your child may have different symptoms. you can visit HHT.org for more information. Some doctors are blind to this because it is uncommon but it is NOT Rare!
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