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AVM Survivors Network

I thought I was cured


#1

Hey everyone I am Kelli. I had a large ruptured AVM when I was 15 years old in 1999. I had a few craniotomies to remove it and had an angio 6 months and a year later and was told i was cured. I recently went to get a scan so i get the ok to have a baby just to be precautious and the mri said it was back. I cant believe 19 years later it is back! I know it is possible since i was a pediatric patient then but i am some what devistated. I have had an angio and fMRI and waiting to see the options. I am just reaching out to see if there are others out there with regrowth and your expeirence.


#2

Hello Kelli. First let me say, I’m so sorry to hear of the recurrence. However, let me also say you definitely want to follow up with your neurosurgeon to get this taken care of. Second, I have heard of recurrence in a few cases here and there. I think the reason it is so little heard of it because it is already a very rare disease as is. I have had 3 bleeds myself. Every time the doctors say “its obliterated” I’m a little skeptical. It might be a good idea to get a second opinion if you feel up to it.
I know of at least one hospital that offers second opinion for AVM patients:

I’m not a doctor nor a medical worker. But as a brain AVM victim, I understand the need to have it gone for good. Blessings as you go!


#3

Thanks so much! Yes late yesterday I decided to get a second opinion from Dr Lawton at Barrow in Arizona since he has done so many AVMs. They have a second opinion program there. I am hoping to get both Neurosergons opinions soon and be able to make a very educated decision. I think my thing now is to help make sure that pediatric neurosurgons follow up more than just a year, that instead to be monitored at least to 18 years of age. There is good literature now (which wasnt there 19 years ago) that support that. I just want people to not go 19 years later to find out its back. I am lucky that this one is much smaller than the first round and I found it before a bleed. Thanks so much for your support! Some days you just need that you know :slight_smile:


#4

One other thing I might mention, the Joe Kneikro foundation is in Arizona:
https://www.joeniekrofoundation.com/
Joe Niekro Foundation, 26780 N. 77th St. Scottsdale, AZ 85266

Maybe that will be helpful as well. Grace and peace!


#5

I went through something similar, luckily not as spread out, though. My AVM bled in 2006 (I was ten), and it was treated with the Gamma Knife in 2007. I went for MRIs for the following years, and in 2011 I was told that it was gone, but that they wanted to do another MRI a year later. In 2012, they said they were seeing something on my MRI and they scheduled me for an angiogram, which confirmed two residue areas, each 0.5 mm by 2 mm in size. They attempted to do the super-glue method with an angiogram, which did not work because my vein did not go straight up. As a result, I had the Gamma Knife again that year.

I also aged out of children’s hospitals during this time… I was scheduled for a follow-up MRI, and then at the last minute they called my mom and said, “Oh, you need to come back tomorrow for a follow-up so that we can move her case to another hospital.” (As if they hadn’t realized until that day that I was 18!) So at the last minute, we had to find somewhere to stay in the city, just to meet with my surgeon for ten minutes to be told that another hospital would give me my following MRIs. I’m so glad all of this is behind me now, though… it’s been 3 years since my last MRI.

Wishing you all the best!

-Julia


#6

Thanks so much for sharing with me! I am so glad that you are doing so well! That’s crazy they didn’t realize that… of you know a minor detail there :wink: The size of mine is similar to yours i think its 1.8cm x.8cm so its good hear that they were able to treat those as well. It gives me hope! Thanks so much for taking time to share and it really helps me through this crazy path of round 2.


#7

Hi kspinks:

My AVM ruptured in 2014 and I had Gamma Knife Radiation 5 months later. After each subsequent MRI, MRI, CAT Scan, etc., I was told “we don’t see it”. Stupid me, thought that meant, “it’s gone”! I thought I was superwoman. And then … I had a follow-up Angiogram, and superwoman crashed and burned. The AVM was still there, and was 50% smaller, but could only be detected with an Angiogram. After my 20-minute pity party, I picked myself up, put my ego back in the closet, and decided to continue the fight that I’m still in today. I have since learned to listen to what the doctor’s say. If I am unclear about what they are saying, I make them slow it down and give it to me again at my speed. I no longer interpret what they are not saying. AVM’s are evil. They can come back when you least expect it. However, we are stronger than a dam AVM. When/if they dare to come back, we just kick butt again and again. You/me/we are in the fight and we will be victorious again. God bless you.

Sharon D…


#8

So sorry to hear this Kelli. I’m afraid that AVMs are nasty whatsits. Unless they and all their feeder veins etc are removed entirely they just recruit more and regrow themselves.


#9

Thanks so much Sharon! I fought a lot the first time around re- learning to read and write and i showed myself my inner strength. Round 2 i plan to fight just as much if I have to! Personal drive is pretty amazing and helps you to find strength when you need it. Thanks so much for the supprt it means so much to me!!


#10

Thanks so much! Yes i know at times its hard for the Drs to see it all as well. They do the best they can but sometimes small parts can be hidden. I am just thankful of their amazing talents and keeping me alive that day! I will just hope their talents will be able to remove the rest now :slight_smile:


#11

Hi, im 41 now, my first bleed was 1997; then again in 1998; and then in 2004. Since then though, i ve had 2 Gamm Knife radiosurgery (2005 and 2008) and this year, they say that my AVM has almost totally gone…


#12

Unfortunately this is something that comes up a lot and I recall being 30 and having many follow ups due to my neuro concerned that it was common in children to have regrowths and as she thought i was neither young or old was wanting to take every precaution possible… In your case I would say that you kicked its butt before and you will definetly do it again with ease… Please keep us posted on your journey and we will all fight this battle with you… God bless!


#13

My daughter has had 2 craniotomies to remove her AVM. First was emergency just hours after rupture and second was 16 months later after her one year angiogram detected residue or regrowth. No one was expecting that because all MRIs came back clear after the first craniotomy and subsequent angiogram and embolization. She’s almost 12 now and was almost 10 at time of rupture. Her surgeons said she’d be scanned frequently until she’s an adult. MRI scheduled for June 2019 and she’ll have an angiogram in about 2 years. Thanks for drawing people’s attention to this. Hope your treatment goes well.


#14

thanks so much ! Its looking like radiosurgery may be the solution. I will see soon. I will wait for the second opinion and then prepare to fight once again! i am so glad your dr was so precautious you never know!


#15

Thanks so much! I am so happy to see the standards being changed. Its amazing to see much improved understanding for young patients over the last 19 years!! I have a feeling if we looked 2 or 5 years out my residual would have been there. That expectation just wasnt there then. I hope the best for her! She sounds like a strong 12 year old, you go girl!! I am just happy to see these changes for the best outcome for the younger ones!!