Well My doctor said that avm are genetic. An in my family my grandmother had one and then my aunt and Im the last one.
Hi,
Just so everyone knows I have had a stroke at age 34. I didn't have many symptoms. I thought everybody got blood noses. It is very important that everyone has a HHT test. I wish somebody had told me about them. Seven people in my family have HHT. Three of my children have HTT. My son had a brain HHT which was removed. My two children have micro hht's lungs. I'm handicap now. I have aphasia, I have trouble getting words out. My right side in numb. I also have right sided paralyzing things. I also have a brace my husband puts on in the morning. I had a HTT in my lung. It went in my heart, and stopped in my brain. I have lots of things to share but can't. Don't wait. I wish somebody told me.
My doctor told me AVMs are thought to be hereditary. I had one, and my grandfather died of a blood clot. Of course, I don't know if there is any connection.
-Chad
That is STRONG anecdotal evidence in my mind. My doctor told me AVMs occur in 1 in 300,000 people. Three in the same family seems ... statistically unlikely. Thanks for sharing.
YES THEY ARE. my grandmother my mom and i all have or had avm s
It is not a definate but it is more likley if a family member has one. My mom
And grandmother had ones in there brain. Mine was in my spine. Have your kids checked
Early in life. Dont take anybodys word that there not passed down.
Reply by Doug.SYES THEY ARE. my grandmother my mom and i all have or had avm sIt is not a definate but it is more likley if a family member has one. My mom And grandmother had ones in there brain. Mine was in my spine. Have your kids checkedEarly in life. Dont take anybodys word that there not passed down.
I have an AVM which caused 2 seizures when I was 14. Nothing was diagnosed until last year when I was 28 and suffered another seizure. My AVM was then diagnosed. It's a right parietal AVM and is the size of a plum. My AVM affects my left leg and arm when I suffer a seizure.
My fathers cousin also suffered a seizure when she was 14 and ended up in a coma for a few weeks. She suffered a stroke which affected the left side of her body which she had to learn to re-use. She recovered and was advised she had an abnormality of veins and arteries in her brain. It can't be operated on as it is too deep apparently. Hers is also on the right of her brain as is mine and is the size of a walnut.
Seems too much of a coincidence not to be hereditary but surgeons and consultants advise they are not!
I wanted to add to my initial statement. Our family has CCM (cerebral cavernous malformation) and they are familia. Our family member's who currently do no have sysmtoms can go and have a "genetic test" to see if we have the defective gene..Our oldest son and daughter and sister-in-law and her children do not carry this gene, so will not contract CCM. There is a difference between CCM and AVM, I should of clarified that in my statment. If there is a gene that has been detected for AVM members , I would think a "genetic blood test" would confirm it.
So I will leave that thought with the experts. I have been able to comfirm that CCM members can get a genetic test to confirm if no symtoms to confirm they are carrier..Thank you for allowing me to add this important difference..
I think it's more on what caused your AVM. My blood disorder HHT makes them hereditary, but I think that some cases they're not. Maybe look into why it occurred and if that is hereditary rather then AVM's themselves.
my doctor said they might be linked to one gene
You have made a good question Sue ... I read all the posts ccarefully and I felt comfused. Some doctors in my country told to my parents that avm are herebitary and some doctors abroad told us that avm's are not herebitary. I always remember my parents who were scared to have another baby (I was the first child). Hopefully after many medical exams and many years my mother gave birth to a healthy baby boy ... when I was 10years. Unfortunatelly in the past I have found families in wich two of the members have avm on the brain or inside the body. I personally believe that AVM is hereditary and that makes me fear more ... God help us
Here are some article abstracts about the genetics of vascular anomalies:
http://www.ncbi.nlm.nih.gov/pubmed/17670762
http://www.ncbi.nlm.nih.gov/pubmed/20888461
http://www.ncbi.nlm.nih.gov/pubmed/22913934
http://www.ncbi.nlm.nih.gov/pubmed/18446851
This Vascular Malformations Gene Panel has a useful summary of the known genetics of avms, the particular genes screened for, and their associated phenotypes:
http://www.aruplab.com/Testing-Information/resources/TechnicalBulle...
The Panel screens for 10 genes known to lead to particular types of malformations, but it is already out of date. GNAC, which causes Sturge-Weber and portwine stains, would be the eleventh gene.
Dancermom: Thanks for the links.
beans
These links are so good and have so much information!! Appreciated so much!
Good advise
Follow the facts. Knowledge is power. You rock!
There ya go, BAM, spread the facts and knowledge! We just got our hardcopy book that Dr. Daniele Rigomanti edit and wrote regarding CCM and the nervous system. Amazing read. Our family now has a book to share, wish it wasn't so, but we are all about facts and hearing from the Top Dogs who diagnosis, treat, teach, healing process. This physician really knows his stuff. Just adding that as a side comment.
Keep the links of truth & knowledge to teach us all. This is how we heal from the inside out.
This is a difficult question. While I am not a doctor, my experience with AVM has taught me they are very skilled plumbers. That is they are great at fixing leaks, but they don't design blood vessels. The knowledge the doctors have is based on observations. While they have worked incredibly hard and made fantastic progress, the problem here is trying to determine cause on a problem that occurs at very low percentage in the population.
As the current estimate is 0.14% of the population has AVM and the majority of people with the AVM are never identified, it is very difficult to trace if AVM is a hereditary disease. It is much easier to identify if a disease is hereditary and causes when it more common and better identified. In fact, the details they have determined on the cause of AVM are vague.
There are diseases like Huntington's disease that they have traced the cause to a specific gene and they can prove it is hereditary. Unfortunately, there are not many diseases that are this well understood and even in this case, they don't have a cure. Another example is Alzheimer's Disease that strikes millions of people and they still don't have a cause. So, while a doctor may make a statement that AVM is not hereditary, I don't assume this is a proven fact.
Based on stories in AVMsurvivor, there seems to be two groups of people. One group is the unique case where only one person in a family has AVM. The other group is multiple cases in a family, usually more than two cases per family. It would be interesting to get a lot of data on AVM per family to do a statistical analysis. I could do the statistics part, but gathering all that data would be very difficult.
Back to the subject, I have children. I tell them they probably don't have to worry. However, I review what happened to me and discuss details likes seizures, MRI's, and angiograms. My goal is to provide them with enough information to handle a AVM if they do have one.
Our grade schools have the kids put together a family tree of health problems. This is a very useful tool and based on some of the stories of other's with multiple people having AVM or similar problems, I will review these family trees. It's another project for me to put stuff together to bore my children.
This reminds me of a saying from I don't know where.
"Better to bore them with stuff they don't need then to leave them hanging in the breeze."
This one from Aruplab is excellent. It explains the subject well showing both inherited types of AVM and unique (sporadic). I saved this one to show my kids. Thank you very much.