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AVM Survivors Network

Can you have more than one avm in your body?


#1

Its been awhile since ive logged in, after my avm was taken care of in my uterus I was fine. Its been two years, and now Im getting severe headaches all the time, my doctors are sending me for a ct scan to make sure there is no other avm, they said once youve had one your at high risk for another. Is this true from what any doctors anyone has talked to? I thought there could only be one.... Im very nervous now I dont want to experiance this again especially when its in a more dangerous area.


#2

AVMs are mostly formed at birth and having one in the first place is rare so to have two I would personally say very rare guess anything possible but unlikely but thats my view. Trouble is once you had one of these and had oblierated by whatever means you worry like hell about evey pain you get in the head thinking is that another one like most on here including myself before having such thing you would of taken some tablets and forgotten about it not even khowing what avm was all about. I get headaches fairly regular now and odd sensations in the brain but been told 100 percent gone and nothing there so guess have to live with it now. I think your doctor is just playing on the safe side and to check which isnt a bad thing as sure it be ok but knowing its been checked will help you to stop worrying as stessing about it will only make it feel worst I been there and its frightening how stress can make your feel.

All the best and good luck


#3

lmarie, it is inaccurate to say that those with one avm are at high risk for another, though the risk is higher than those in the general population. However, there are certain genetic conditions that predispose people to have multiple avms. HHT is one of them. For more information, see hht.org or type "hht" in the search box at the upper right corner of this page.

I hope your scans are clear. Headaches can have many causes other than avms.


#4

Even though it can be unsettling I still think it's better to err on the side of caution and take a look - just so you can know for a fact that's not the case.

I wish I could have every inch of my bodied imaged - MRIs from head to toe, just so I could know for a fact I don't have another anywhere else in my body.


#5

It is very possible to have ore than one in your body - it is not just HHT that predisposes one genetically. I had an avm removed from my occipital portion of my brain 25 years ago - another was found nearly 15 years later in my arm after the birth of my twins. Our 10 yr oldson also has an avm left parietal lobe. We are in genetic counseling at mgh in Boston where we are found to be a fmaily not having HHT there is a genetic tie that has not yet been identified (my mom’s family has history of stroke). I would
D recommend a consult with your doctor and getting an MRI to rule it out.What they have done for our son is conduct MRI imaging to determine no additional MRI In other life threatening areas of hus body (heart, lungs, liver ) thank god he has no others than te avm in his brain.



Good Luck and God Bless


#6

I was told aneurysms are genetic, AVM’s are not!


#7

Hi lmarie. I've had a very similar concern. Just had a uterine AVM discovered and emboilzed in December, and suddenly became worried about a pulse I sometimes hear in my right ear when lying down. I've had it for years and thought it was just from sinuses or something, but after learning of the AVM (and, incidentally, watching a family member by marriage suffer a ruptured brain aneurysm last year), I kind of freaked out. My doc, chief of interventional radiology at a major teaching hospital, told me repeatedly that having one AVM doesn't increase the chances of having a second except in the case of certain genetic conditions that, he said, relate mainly to the lungs. He's nevertheless ordered an MRI just to put my mind at ease. Waiting on the results now.

(That said, mom2three's comment makes total sense to me, that there may be other genetic predispositions to AVM that SOME people with AVM have that haven't yet been identified. I also carry the BRCA-2 gene that predisposes me to breast and ovarian cancer at very high rates, and there are lots of anecdotes in the hereditary breast cancer community about people who test negative for both of the as-yet-identified BRCA genes and yet still seem clearly to have a genetic predisposition to cancer running in their family. There's so much we don't know about genes still.)

Anyway, I take all of the above to mean that just because I had a uterine AVM, chances I'll have another elsewhere are pretty darned low, but I'm grateful my doctor's humoring me with an MRI. Glad you're getting checked too and hope it turns out to be nothing...


#8

I have HHT and had treatment to remove my brain AVM. as dancer om said people with HHT have more risk and they routinely check the lungs of people in the UK with HHT and I have two small PAVMs. They are monitoring them every five years and I need to have antibiotics for dental treatment (though the recommendation in other countries might be different.)

Good luck with the scan.


#9

For your peace of mind, why not request a test to ensure that another AVM is not present? Peace of mind is priceless! Best wishes.


#10

Dancermom is correct as I have had multiple AVMs (bladder in 1996, brain in 2000 & neck in 2005). Unfortunately, when I mentioned hht to my doctor & being tested, my insurance didn’t cover that type of genetic testing . Definitely get checked out since it doesn’t hurt. Plus, you’ll get peace of mind.


#11

There is another condition that predisposes you to AVMs and that is Cowden's Syndrome which I have. At present I have multiple avms in one foot and another in the other foot. I also had one in my right arm and the drs resected the vein in that arm to get rid of the avm. The op on the arm was two years ago and thankfully it has not re-occurred- yet. My condition means that I can get avms anywhere anytime. Mine is a genetic familial cancer Syndrome. I have had Breast cancer and am at present waiting on an op for Thyroid cancer. I'm only telling you so that you realise that you need to be vigilant with your health. If you are not happy with a dr then get another opinion. Sorry to sound like a wet blanket.


#12

I had two in my brain. One Pial and one Dural (one inside and one outside my brain). Good news... I was just contacted this morning by my doctors at Barrows Neurological Institute in Phoenix AZ. I had a series of brain scans just before Christmas as I approach my 5 year anniversary... ALL CLEAR... nothing showed up out of the ordinary! Good luck to you!


#13

My son has a genetic condition called CM-AVM that can produce AVM's throughout the body. He is only 3 and has more scans this past year after discovery with genetic testing. Wish I could be more help just wanetd to share information on his condition.


#14

I have a friend who has had two AVM's removed one on his cheek,and the other in his mouth. Now he has one on his leg. His doctor told him this is common to have one or more and a AVM that re appears is normal. Bottom line I think everyone's AVM is so different due to their body generics.


#15

Violet, is your friend a member here? If not, please encourage him to join. Multiple avms are an indicator of an underlying condition.


#16

Yes, it is very possible. The worst location is the brain and spine. However, in other places the risk of a rupture will not be life treating. You should have scans done. I know this because my daughter age 15 had a rupture in her spine and is now paralyzed while she was in the hospital I had them perform scans to see if other avm were present.they discovered two more but weren’t cause for concern but we monitor them. Since you are having headaches I would request a MRI of brain and spine. Good luck.