8 year old daughter with AVM

Hello everyone. I am conducting self research for my 8 year old daughter who was diagnosed with AVM on her left hemisphere last week. We met a neurologist last week and have a follow up within the next two weeks with a neurosurgeon. So far, the neurologist is saying that it is tiny and at the surface of the brain based on MRI only at this time. He was casual and made it sound like it would be an easy procedure to remove it and things will be normal. My suspicion about his casual attitude was he was trying to reduce our concerns. It actually worked until I started doing some research on my own. I have some questions based on what I know today if someone can address it. Any opinion is great since I am just collecting information right now.

  1. If it is tiny and on the surface, is actual surgery the most effective way to remove it. What are peoples thought to the other two methods?
  2. How large would a “flap” be on the cranium for a tiny surface AVM?
  3. Can AVM return oin the brain?
  4. How long is a recovery from a surgery?

Any thoughts would be appreciated. Thanks.

Welcome to the site! there are a lot of helpful people here to help you navigate this whole experience. My 9 year old daughter (10 now) was diagnosed with an AVM in her left frontal lobe after a hemorrhage in August. We have been visiting doctors and doing all the research as you are, since then. After looking at all of the options and 2nd and 3rd opinions, we are presently waiting on a surgery date from our neurosurgeon.

They always want to treat kids with AVMs because of the high risk of a hemorrhage over their lifetime since they are so young. They generally treat with gamma knife radiation, or surgery. My understanding is that they usually prefer to do surgery on children if the AVM is accessible, because the result is immediate, while radiation can take several years and is only around 70% effective depending on the size and location. Each AVM is unique, so you will need to see your neurosurgeon, and your daughter will likely need to have an angiogram so that they can study her AVM in greater detail. It has been a long journey for us, that we hope to be finished with soon.

Once you meet with your neurosurgeon, don’t hesitate to get several other opinions, then the path you should take should become more clear. As for the AVMs returning. It is my understanding that they very very rarely return in children, however, they usually follow children for quite a few years after obliteration of the AVM, to be sure it hasn’t begun to reform. Feel free to ask my any other questions you have, as we have been at this for a while now!

Susan

Welcome,

  1. If they can do surgery with minimum risks, it is the fastest and surest way to eliminate an AVM. Several key questions should center around: What else is in the area that might be damaged? What functions are near that might be affected? Wife’s aneurysm surgery was “in the neighborhood” of some eye control nerves, and she had double vision for 30 days. Dr said it was most likely temporary, but she was starting to wonder about day 25… If the AVM is deep or complex, embolizations and radiation are likely more widely used.
  2. The flap would depend on a lot of factors. I THINK the way they remove the flap, hair that is on the flap, with the exception of where the scar will be, will continue to grow. Where the scar is, it won’t. DR should be able to show you where the flap will be. If it’s inside the hairline, should not be noticeable. My son, who’s also had brain surgery, keeps his hair super short, so his scar shows through. To him, it’s a badge of honor or something.
  3. Some recent posters have said yes. I think it’s rare.
  4. I would guess surgery on day 1, ICU for 2-3 days, regular room for 1-2, and then released. She will be up and walking by day 2 most likely. Limitations upon release are likely to be no activity where she could fall or bump her head, or athletic activities, get plenty of rest, otherwise, no restrictions.

Of course, all of the above is my guess-need to ask your DR for sure.
Best wishes to all of you.
Ron, KS

Thank you for your response. please update me with your experience as it appears you guys are couple months ahead of my daughter. One item I am confused with is whether the removal of the “superficial” AVM will cause any lasting neurological damage. From other posts, it sounds like some people do and some people do not, but I cannot tell whether it is because it is superficial or not. my daughter is on the surface of the brain and “tiny”.

Anyways, good luck. I am assuming your daughter is “superficial” and on the surface. I hope well for your daughter. By the way, my daughter’s right arm and right cheek went numb for 5 hours. I did not have a chance to ask the neurologist whether that was caused by a rupture. What were your daughter’s symptoms when it hemorrhaged? I hope she had a full recovery. My daughter’s motor skills came back the next morning.

Susan Troop (Lindsey’s Mom) said:

Welcome to the site! there are a lot of helpful people here to help you navigate this whole experience. My 9 year old daughter (10 now) was diagnosed with an AVM in her left frontal lobe after a hemorrhage in August. We have been visiting doctors and doing all the research as you are, since then. After looking at all of the options and 2nd and 3rd opinions, we are presently waiting on a surgery date from our neurosurgeon.


They always want to treat kids with AVMs because of the high risk of a hemorrhage over their lifetime since they are so young. They generally treat with gamma knife radiation, or surgery. My understanding is that they usually prefer to do surgery on children if the AVM is accessible, because the result is immediate, while radiation can take several years and is only around 70% effective depending on the size and location. Each AVM is unique, so you will need to see your neurosurgeon, and your daughter will likely need to have an angiogram so that they can study her AVM in greater detail. It has been a long journey for us, that we hope to be finished with soon.



Once you meet with your neurosurgeon, don’t hesitate to get several other opinions, then the path you should take should become more clear. As for the AVMs returning. It is my understanding that they very very rarely return in children, however, they usually follow children for quite a few years after obliteration of the AVM, to be sure it hasn’t begun to reform. Feel free to ask my any other questions you have, as we have been at this for a while now!



Susan

Thank you for your response Ron. I hope your wife is doing well. Did her vision come back? Also, was her AVM on the surface of the brain?

Ron, KS said:

Welcome,

  1. If they can do surgery with minimum risks, it is the fastest and surest way to eliminate an AVM. Several key questions should center around: What else is in the area that might be damaged? What functions are near that might be affected? Wife’s aneurysm surgery was “in the neighborhood” of some eye control nerves, and she had double vision for 30 days. Dr said it was most likely temporary, but she was starting to wonder about day 25… If the AVM is deep or complex, embolizations and radiation are likely more widely used.
  2. The flap would depend on a lot of factors. I THINK the way they remove the flap, hair that is on the flap, with the exception of where the scar will be, will continue to grow. Where the scar is, it won’t. DR should be able to show you where the flap will be. If it’s inside the hairline, should not be noticeable. My son, who’s also had brain surgery, keeps his hair super short, so his scar shows through. To him, it’s a badge of honor or something.
  3. Some recent posters have said yes. I think it’s rare.
  4. I would guess surgery on day 1, ICU for 2-3 days, regular room for 1-2, and then released. She will be up and walking by day 2 most likely. Limitations upon release are likely to be no activity where she could fall or bump her head, or athletic activities, get plenty of rest, otherwise, no restrictions.



    Of course, all of the above is my guess-need to ask your DR for sure.

    Best wishes to all of you.

    Ron, KS

Yes, her vision came back fine after a month. She had double vision–where one image was above the other–it was tough for her to walk since she never knew where steps really were. The low tech solution–wear an eyepatch and alternate days so both eyes stay strong.

No, her AVM was large and deep, originally deemed inoperable (1991). By 1996, she had embolizations and microsurgery to remove it.

Ron, KS

that is a story with a great ending! thanks for your response. hope is such a great asset for me.

Ron, KS said:

Yes, her vision came back fine after a month. She had double vision–where one image was above the other–it was tough for her to walk since she never knew where steps really were. The low tech solution–wear an eyepatch and alternate days so both eyes stay strong.


No, her AVM was large and deep, originally deemed inoperable (1991). By 1996, she had embolizations and microsurgery to remove it.



Ron, KS

My daughter’s AVM is in the frontal lobe, along the midline, but not on the surface. It is 2cm and is pretty compact. She never had any symptoms of it until the bleed. When it hemorrhaged, she had a sudden severe headache, and threw up for the first 24 hrs constantly, and then off and on over the course of a week, while the doctors tried to figure out what was wrong. She didn’t have any neurological deficits from the bleed, which is why it took a week for them to finally do a CT scan. She still doesn’t have any deficits, but the neurosurgeons tell me that she probably won’t be so lucky if it bleeds again.

As far as risks of permanent deficits from surgery, only the neurosurgeon can tell you that. It has everything to do with the makeup of the AVM (feeding arteries, draining veins, rate of the blood flowing through it), and the location. And as I understand, the MRI can show a lot about location, but the angiogram is what really gives the surgeon what s/he needs to determine the best treatment. As our surgeon told us during the process, the answer to how best to treat an AVM is not black and white. You can ask 5 different surgeons and you will often get at least 4 different answers. That is why you need to explore all of the options, and then go with the one you feel best about. We were fortunate in that the opinions from other surgeons came back exactly the same, recommending surgery, though I am still very nervous about it! The other way to look at it is that you have to balance the risks from the surgery with the risks from a possible bleed. Unfortunately, there aren’t any “no risk” options. It is all risk/benefit analysis.

The process takes a while, so buckle up, and be ready for a lengthy process (at least it feels that way!) as you begin to navigate this medical issue. I will be happy to answer any other questions you may have to the best of my ability.

I hope your daughter is handling it well. It is hard to watch your child go through something like this. We have also had to navigate some school issues, as her neurosurgeon has restricted her from physical activity, like P.E. until we get treatment. We are praying for you family as you begin your journey!

Susan

Tony said:

Thank you for your response. please update me with your experience as it appears you guys are couple months ahead of my daughter. One item I am confused with is whether the removal of the “superficial” AVM will cause any lasting neurological damage. From other posts, it sounds like some people do and some people do not, but I cannot tell whether it is because it is superficial or not. my daughter is on the surface of the brain and “tiny”.


Anyways, good luck. I am assuming your daughter is “superficial” and on the surface. I hope well for your daughter. By the way, my daughter’s right arm and right cheek went numb for 5 hours. I did not have a chance to ask the neurologist whether that was caused by a rupture. What were your daughter’s symptoms when it hemorrhaged? I hope she had a full recovery. My daughter’s motor skills came back the next morning.



Susan Troop (Lindsey’s Mom) said:
Welcome to the site! there are a lot of helpful people here to help you navigate this whole experience. My 9 year old daughter (10 now) was diagnosed with an AVM in her left frontal lobe after a hemorrhage in August. We have been visiting doctors and doing all the research as you are, since then. After looking at all of the options and 2nd and 3rd opinions, we are presently waiting on a surgery date from our neurosurgeon.

They always want to treat kids with AVMs because of the high risk of a hemorrhage over their lifetime since they are so young. They generally treat with gamma knife radiation, or surgery. My understanding is that they usually prefer to do surgery on children if the AVM is accessible, because the result is immediate, while radiation can take several years and is only around 70% effective depending on the size and location. Each AVM is unique, so you will need to see your neurosurgeon, and your daughter will likely need to have an angiogram so that they can study her AVM in greater detail. It has been a long journey for us, that we hope to be finished with soon.



Once you meet with your neurosurgeon, don’t hesitate to get several other opinions, then the path you should take should become more clear. As for the AVMs returning. It is my understanding that they very very rarely return in children, however, they usually follow children for quite a few years after obliteration of the AVM, to be sure it hasn’t begun to reform. Feel free to ask my any other questions you have, as we have been at this for a while now!



Susan

Susan called that right ! Opinions get more then one if you can Gordon

Susan Troop (Lindsey’s Mom) said:

My daughter’s AVM is in the frontal lobe, along the midline, but not on the surface. It is 2cm and is pretty compact. She never had any symptoms of it until the bleed. When it hemorrhaged, she had a sudden severe headache, and threw up for the first 24 hrs constantly, and then off and on over the course of a week, while the doctors tried to figure out what was wrong. She didn’t have any neurological deficits from the bleed, which is why it took a week for them to finally do a CT scan. She still doesn’t have any deficits, but the neurosurgeons tell me that she probably won’t be so lucky if it bleeds again.

As far as risks of permanent deficits from surgery, only the neurosurgeon can tell you that. It has everything to do with the makeup of the AVM (feeding arteries, draining veins, rate of the blood flowing through it), and the location. And as I understand, the MRI can show a lot about location, but the angiogram is what really gives the surgeon what s/he needs to determine the best treatment. As our surgeon told us during the process, the answer to how best to treat an AVM is not black and white. You can ask 5 different surgeons and you will often get at least 4 different answers. That is why you need to explore all of the options, and then go with the one you feel best about. We were fortunate in that the opinions from other surgeons came back exactly the same, recommending surgery, though I am still very nervous about it! The other way to look at it is that you have to balance the risks from the surgery with the risks from a possible bleed. Unfortunately, there aren’t any “no risk” options. It is all risk/benefit analysis.

The process takes a while, so buckle up, and be ready for a lengthy process (at least it feels that way!) as you begin to navigate this medical issue. I will be happy to answer any other questions you may have to the best of my ability.

I hope your daughter is handling it well. It is hard to watch your child go through something like this. We have also had to navigate some school issues, as her neurosurgeon has restricted her from physical activity, like P.E. until we get treatment. We are praying for you family as you begin your journey!

Susan

Tony said:
Thank you for your response. please update me with your experience as it appears you guys are couple months ahead of my daughter. One item I am confused with is whether the removal of the “superficial” AVM will cause any lasting neurological damage. From other posts, it sounds like some people do and some people do not, but I cannot tell whether it is because it is superficial or not. my daughter is on the surface of the brain and “tiny”.

Anyways, good luck. I am assuming your daughter is “superficial” and on the surface. I hope well for your daughter. By the way, my daughter’s right arm and right cheek went numb for 5 hours. I did not have a chance to ask the neurologist whether that was caused by a rupture. What were your daughter’s symptoms when it hemorrhaged? I hope she had a full recovery. My daughter’s motor skills came back the next morning.

Susan Troop (Lindsey’s Mom) said:
Welcome to the site! there are a lot of helpful people here to help you navigate this whole experience. My 9 year old daughter (10 now) was diagnosed with an AVM in her left frontal lobe after a hemorrhage in August. We have been visiting doctors and doing all the research as you are, since then. After looking at all of the options and 2nd and 3rd opinions, we are presently waiting on a surgery date from our neurosurgeon.

They always want to treat kids with AVMs because of the high risk of a hemorrhage over their lifetime since they are so young. They generally treat with gamma knife radiation, or surgery. My understanding is that they usually prefer to do surgery on children if the AVM is accessible, because the result is immediate, while radiation can take several years and is only around 70% effective depending on the size and location. Each AVM is unique, so you will need to see your neurosurgeon, and your daughter will likely need to have an angiogram so that they can study her AVM in greater detail. It has been a long journey for us, that we hope to be finished with soon.

Once you meet with your neurosurgeon, don’t hesitate to get several other opinions, then the path you should take should become more clear. As for the AVMs returning. It is my understanding that they very very rarely return in children, however, they usually follow children for quite a few years after obliteration of the AVM, to be sure it hasn’t begun to reform. Feel free to ask my any other questions you have, as we have been at this for a while now!

Susan