Replies to This Discussion

Permalink Reply by Susan Troop (Lindsey's Mom) on February 15, 2010 at 4:01pm

Susan Troop (Lindsey's Mom) said:

Here is my understanding (for what it is worth!)

Regrowth....There are some studies that you can find online that show the possibility of regrowth of an AVM after angiographically confirmed obliteration, in children. Although the regrowth is very rare, that is why they will follow children into adulthood, to be sure it doesn't regrow. I think it is because their vasculature is not mature yet, which is why it doesn't happen in adults.
http://thejns.org/doi/abs/10.3171/jns.1996.84.5.0879?journalCode=jns

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711243/


http://thejns.org/doi/pdf/10.3171/JNS/2008/109/9/0486


Genetic ComponentThere are as you said a few types that are genetic, but otherwise they are not http://www.ninds.nih.gov/disorders/avms/detail_avms.htm

As far as the risks from an angiogram. I think any procedure has its risks, but the risk from the angiogram is pretty small, though that depends a lot on your particular health history as well. My daughters embolization (her particular one) only had a 4-5% risk of complications and I know the angiogram itself had fewer risks than that.

That info might not help, but thought I'd give it a shot.

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Permalink Reply by mary kate on February 16, 2010 at 12:48pm

Thanks a lot for the info...very helpful

Susan Troop (Lindsey's Mom) said:

Susan Troop (Lindsey's Mom) said:

Here is my understanding (for what it is worth!)

Regrowth....There are some studies that you can find online that show the possibility of regrowth of an AVM after angiographically confirmed obliteration, in children. Although the regrowth is very rare, that is why they will follow children into adulthood, to be sure it doesn't regrow. I think it is because their vasculature is not mature yet, which is why it doesn't happen in adults.
http://thejns.org/doi/abs/10.3171/jns.1996.84.5.0879?journalCode=jns

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711243/


http://thejns.org/doi/pdf/10.3171/JNS/2008/109/9/0486


Genetic ComponentThere are as you said a few types that are genetic, but otherwise they are not http://www.ninds.nih.gov/disorders/avms/detail_avms.htm

As far as the risks from an angiogram. I think any procedure has its risks, but the risk from the angiogram is pretty small, though that depends a lot on your particular health history as well. My daughters embolization (her particular one) only had a 4-5% risk of complications and I know the angiogram itself had fewer risks than that.

That info might not help, but thought I'd give it a shot.

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Permalink Reply by Gordon D on February 16, 2010 at 1:47pm

Susan
! I'd like to thank you also for the information. I've had two Doctors tell me that my AVMs were partly caused by my blood disorder (Factor V Leiden )and some type of trauma. Now if this has any truth to it then I would think I could have many more. Now I do have a Dura AVM which I hear acounts for about 2 % of all AVMs and was not present at birth .But who know what we will hear tomorrow lol

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Permalink Reply by Kene Iloenyosi on February 16, 2010 at 7:49pm

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

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Permalink Reply by mary kate on February 16, 2010 at 10:25pm

Wait...so you were awake during the angio...I thought they put you to sleep? I had one after my craniotomy, but don't remember anything after being wheeled to the room. I just assumed they put me to sleep, but it coulda been the morphine

Kene Iloenyosi said:

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

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Permalink Reply by David on February 17, 2010 at 7:03am

When I had my angiogram I was awake. I think that it's a case by case decision on that. They wanted to make sure that I wasn't going to drive home, and I had to rest for several hours before I could even get up. I'm having an embolization Friday and they are going to put me to sleep for that. They will do angiogram after the finish the embo, yo determine if I need another one before they do the craniotomy. Hope this helps.
Peace
Dave

mary kate said:

Wait...so you were awake during the angio...I thought they put you to sleep? I had one after my craniotomy, but don't remember anything after being wheeled to the room. I just assumed they put me to sleep, but it coulda been the morphine

Kene Iloenyosi said:

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

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Permalink Reply by Kim R on February 17, 2010 at 2:28pm

I hate to burst the bubble of AVMs don't come back because that is not true. They do come back. I know 2 other people, who like me, had embolization and surgery to remove AVMs from our left ear and all of them had recurrence of the AVM. An AVM will grow back if there is even one cell of AVM not removed. It just re-vascularizes and starts to grow again. It's like cancer--but NOT cancer. Maybe brain AVMs are different but non-brain AVMs do come back----unfortunately---and you just have to keep fighting them. That's why you see people on this site who have had several embolizations and surgeries and my own opinion is that any doctor who doesn't know about AVMs recurring doesn't know enough about AVMs--period. Kim

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Permalink Reply by Gordon D on February 17, 2010 at 3:38pm

I was awake during one of my angiogram ,me and the doctor was talking about all the time , he would tell me when he wanted me to hold my breath. It was a little freaky to say the least lol watching the wire go through you brain and when he would put the die in It felt a little strange lol
Just a day in the life of an AVMer

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Permalink Reply by Brenda Dinch on February 17, 2010 at 10:50pm

I was told that when you have an embolization, if they don't close the entire AVM it will grow back. The reason is that AVMs are like a leach, they suck the blood to the AVM and cause pressure to build up. This causes the vessels to build and grow again. I know I didn't explain it as good as my doctor did but, I hope I explained it ok.

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Permalink Reply by Andrea Fisher on February 17, 2010 at 11:56pm

from what i have gathered they will regrow if there is the slightest part left. But I'm like you and don't really believe the doctors all the time! Hope you get some good answers soon to rest your mind!

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Permalink Reply by Tori W. on February 18, 2010 at 12:26am

My neurosurgeon says sometimes they need me to be awake for the angiograms and sometimes it isn't necessary. For my first spinal cord angio I had to be awake so I could breathe and hold my breath when they asked me to. For the last two they were able to put me to sleep, which is what I prefer.

I have to have the angios every three years.

I think my neurosurgeon said it is rare for AVMs to grow back.

mary kate said:

Wait...so you were awake during the angio...I thought they put you to sleep? I had one after my craniotomy, but don't remember anything after being wheeled to the room. I just assumed they put me to sleep, but it coulda been the morphine

Kene Iloenyosi said:

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

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Permalink Reply by Ron, Kansas on February 18, 2010 at 12:37am

Well, Mary Kate, I'm sure we have this all cleared up for you now, right?

From my knothole, my assumption is that any portion of an AVM that is obliterated is gone. Now, to backstep, an AVM can be a tangle of arteries and veins that are not structurally as sound as normal vessels. Viewed that way, any weaker vessel wall not obliterated could possibly steal blood, swell, or maybe rupture later. I view that not so much as "coming back", but a new different one forming.

I am skeptical of being able to answer your questions unless we can get some large medical center to share with us their case histories, such as:

* What percentage of the AVM patients you have treated to successful obliteration have returned with another AVM? What are the percentages of brain AVMs vs non-brain AVMs that recur?

* Clarify which types of AVMS might be heriditary so that we can know to have our other family members tested for AVMs.

As for the angiograms, they are similar to having heart cath's performed, and I would assume the risks are similar. We were awake for ours, but I've ready where others are not.

Hope this helps. Any clues who we could ask for some type of answers we could have confidence in?

Ron, KS

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