I am a 35 year old AVM survivor, been married 3 times, have 2 kids from second marriage and I just got a call last week from my neurologist saying a CT angiogram with contrast showed I have an AVM in the left side, same area as my last one…So. Many. Questions. Back story. When I was 12, almost 13, i woke up one morning with severe, sharp, pain in a spot on the left side of my head. Several drs and tests later turns out I had an AVM and it HAD ruptured and bled. I had brain surgery right after my 13th bday. They shaved my head and cut open the entire top of my head. I was in surgery for 12 hours and needed a couple blood transfusions. I’m not sure of all the details. When I woke up I was temporarily paralyzed on my right side,cruel whole right side. You could have split me with a knife from top to bottom. My speech was messed up. I was in ICU for 3 days. One the second and third day I got my leg back and could walk with a little assistance. I was moved to a regular room where they continued to do therapy on my arm and hand. My speech fixed itself, but because half my tounge was still numb I stumbled over words if I talked to fast. I was in the hospital for a week. When I left I could walk on my own, talk mostly normal, and raise my right arm…my hand still barely functioned. I had home school for a few months and more therapy on my hand. I have full use of it back but to this day there is still a tiny bit of numbness in 3 of my fingers. I went back to school after a few months and there is not really a noticeable difference in me, to others. I know I have slight nerve damage on my right side. When I smile, it’s crooked a little, of course my fingers. I did great in school but I do think it messed with my memory capabilities a little. Any more questions about that, message me…so since then, I had 2 kids and am now married to their step dad. I’ve had headaches off and on forever, but they got worse over the last 6 months to a year. Oh, with the last one I had several MRI’s and arterograms till I was 18, at that time they said it was all gone and released me. I’ve had a couple CTs and I think 2 MRIs, one just a couple weeks ago, since then and they never showed anything but scar tissue. Well over the last 3 months I have had a MRI, EEG, TCD, and CT angiogram. All the tests were normal until the CT with contrast. They called me an hour after that and told me that I have another AVM and I need to see a neurosurgeon. They said it’s not bleeding and in the same area, but that’s all they told me about it. First I wanna know HOW. I can’t find anything about an AVM showing up at 35 that was not there before on any test from 13 to 35. Has anyone had test done that said definitely NOT one there, then one day there was one? Any one that had one completely taken care of, gone…then years later they say you have another one? NOT the same one grew back cause it was not all gotten before, but another one, that was not there before? Then I wanna know, when! I had a CT in 2014 and 2015 (granted they were NOT with contrast) but they didn’t show it. So if this thing just developed after i was an adult, when? How fast can these things form? And why? And mostly now I’m worried about what I have to do about it. I’m worried about being out of commission for any period of time for any reason because I’m afraid my kids father will try to use it to say I can’t take care of them so he should get them. We have had a court ordered custody and visitation agreement that we both went to fort and signed off on back in 2014, but since then he has decided he HATES it and has made several threats of going back to court but he can’t just change it cause he doesn’t like it now. There has to be what they call a change in circumstances that negatively affect the boys for him to change it. If my health changes, if I’m in the hospital for a while, if I’m paralyzed for a while like last time, or worse, permanently, if I need months to recover, or if the side effects care worse than last time, he may see that as his chance and I’m afraid a court might see it that way too. Anyway, not a legal forum…but THAT is what stresses me the most about all this. I see the neurosurgeon Tuesday (August 1) to see what I do next. I’m just totally freaking out. And just as a get to know me bit of info. I’m Christian ( most closely identify with Baptist) and I believe God has a plan, and he has it under control and all the things Christians say at times like these, and I trust him, but I’m scared and I’m trying to not worry but it’s hard.
Sue,
Welcome! It’s great to have you with us, and I hope between us we can help you a little.
First thing in my mind is that surgery, medicine, has moved on a lot since you were 13, so I hope you can have an intervention (if you need it) that is less invasive than last time.
The theory is that AVMs may be congenital or may be developed, so I’m sure it is possible for an AVM to be developed under some circumstances. I do know that if a previous AVM is not 100% removed any remnant can change over time. It seems most difficult (from what I’ve read here or elsewhere) to completely sort out facial and extremity AVMs, so I’m sure it’s possible for other types of AVMs to “reappear” if there is some remnant there. It is also possible to have more than one AVM… so quite possible I think for you to have an AVM at or near where you had your previous one.
I hope your new scans will show the doctors what you have, and what intervention they might do, without giving you the extensive effects as last time. I would also hope that if you’re in a stable relationship with a step dad for your kids, any court with brains would see that there is no case to answer. Actually, if court proceedings are as slow where you live as here, you’ll be better before anything could get to court!
So… sending you positive thoughts, I hope!
Very best wishes,
Richard
I hope all these things too. Thank you 
Hi Purpleiris:
Welcome to the AVM survivor’s network. Your post is quite interesting. I never imagined that another AVM could appear after having one totally eradicated some 33 years ago. WOW! Just yesterday I received word that my (hopefully) final Angiogram w/contrast for the AVM in my cerebellum is scheduled for 8/21/17. I’m over-the-moon with getting what appears to be my final AVM test. I pray for good results and I have placed it in God’s hands. For almost 3 years, I’ve practiced Prayer & Patience (P&P). So far its working for me and it can work for you too. Medicine has come a long ways in 33 years so that alone puts you in a good position for future treatment, if needed. Take care of yourself, love your boys, practice P&P, let Ex can kick rocks, and let God do the rest. All the Best.
Sharon D…
Hi Purpleiris,
Welcome to the AVM network and i am still in shock over reading your post as this has been one of my biggest fears to be honest with you… I am confused how this has occurred just like you mentioned and even more confused that it had never been picked up in past scans over the years.
Is it possible to request an angiogram as they say that is the golden standard in checks for AVM’s etc and maybe, just maybe the CT has been reported incorrectly… I pray that you get through this easy with no major drama and do not have to endure surgery again after going through this at such a young age… please keep us posted what the neuro says and curious if the neuro that you used back then is still around to help or give answers as to what has happened here.
Again you stated it is in God’s hands and you are right and i hope everything works out for you in all areas from the AVM to the kids… God bless!
I had the angio last Tuesday. It is a small AVM there in the same spot. He’s saying it probably grew back or never went completely away after the surgery and radiation I had before. He wants me to do Gamma knife since its right in the middle of my speech and motor strip…so I’d risk loosing my speech and/or my right side if I do surgery. Problem is that you can only have so much radiation in one spot without melting your brain. He wants to know how much I had before but those records seem to have been destroyed since all this time has past. I see a radiologist next week to see what they think. If I can’t do Gamma knife then he recommends I wait and see…having another angio every 2 years and if/when any symptoms that might arise make the risk of surgery worth it, then we’d go ahead with it. For right now he says it’s not bleeding nor does it have an aneurysm on it…but I am having the headaches just about everyday…so I don’t know what will happen now, until I see the radiologist.
Well i know it must be so hard for you right now and I would like to think that maybe they didnt get it all last time during surgery… I mean 33 years ago technology was not the way it is today, however it is quite concerning it was never picked up before.
I hope everything works out well for you and please keep us all posted here as we all want to see you kick its ass for round 2… now thats a real hero!!
Im sure everything will be just fine and take it one day at a time i guess… God bless!
So sorry you are going through this again. 
and. I can certainly understand your worry over your ex too. So many questions for sure I would have too.
Just to update you guys…I am about 3 weeks past my Gamma Knife treatment and all seems well. They decided they could go ahead and try one treatment even though they could not find my old records to see what I had before. I went in and had a frame screwed to my head for the second time in my life. It was shaped different and yes it hurt. I dont remember it hurting last time, just pressure and crunching sound…no sound this time but there was pain…it was not the worst pain ever, but it was kinda up there. It was a LOT of pressure too. Once they are done screwing it in though, its mostly just pressure. It would not have been so bad if I could have sat up while wearing it but I had to have an angiogram done with it on, and that meant laying flat for 2 hours after…well that put me laying/my head resting on the back 2 screws for a little over 2 hours…that was probably the worst part. By 1 1/2 hours it was hurting a LOT. Once they let me sit up though, it was better. The Gamma Knife treatment itself was the best part of the day, I didn’t feel a thing and almost fell asleep. This was the second angiogram I’ve had in the past 3 months and the first one was horrific! I had the worst headache of my life, like screaming in agony pain, for hours. I had vision problems and numbness in my arm. I was in hospital most the day. Nothing helped. Well I remembered/realized once I was home and not doped up that they did not have anything connected to my IV all day after the angio, that meant nothing was flushing the iodine out. The reaction I had was due to the iodine and they just let it sit there instead of flushing it with saline after. I was not drinking anything either so it just stayed in my system for hours causing agony. The second time I made sure they flushed it after! This time I had no headache, besides the frame being on, until after they took the frame off, then I had severe pain. I think that was mostly from the screw holes though. But it was SO much better than laying there with a headache from hell for hours, not being able to see right and body parts going numb! All that said… MAKE SURE THEY FLUSH YOUR SYSTEM after the angio. Yes, I had to pee a lot more, like 4 times in an hour. And since you can’t get up, that means bed pan and probably wetting the bed (for the ladies) and having to have it changed…humiliating, but SOO much better than the pain. Anyway…I’ve hd my follow appointments already and everything is looking ok, healing well. My skull still hurts to lay on but it’s getting better and no noticeable side effects like swelling or loss of function. I go back in a year to 're check and see if there is any progress. If anyone has any questions for me, feel free to ask!
The last one was right after I got home.
Well done!
I’m glad you’re through it! I can see why the pins hurt so much… the pictures are a bit scary.
I don’t remember being on a drip post angio. I can only assume you’ve got a bit of an intolerance with the iodine and it is therefore important to do the flushing with some saline.
Well done, though! I bet you’re glad it is all done!
Richard
Hi there! Hope everything’s fine! Your case is very interesting. It is known in NeuroMedicine that Avm’s in your childhood ( that have been removed) have a increase chance of reappear in the future because the brain system is not full developed.
Best regards and I wish you the best recovery 