It’s been 13 years since my AVM was removed by hand surgery (craniotomy) it was successful and I had it checked 6 months post surgery for any signs of regrowth which there was none. That was that and my surgeon said it’s gone for good and I won’t need any check ups again. I’ve always wondered what if because I’ve read cases of them regrowing after craniotomy, particularly in children (I was 16 at the time). The last 6 months or so i’ve been getting bad headaches and the worst ones have been in the area of my surgery. I’m just wondering what are you guys opinions is it worth getting checked out
My opinion? Yes, get it looked at. MRI is a pretty uninvasive way of getting checked out and if there is anything to see, an angiogram would get the detail but an MRI is just 40 minutes of your life.
I highly agree with DickD. Get it checked out. Go have a MRI scan.
Stressing out about the ‘what if’s’ is never good for anybody and although we often think the stress is really only affecting us, that is false, it affects all of those around us too. Stress can also trigger some pretty savage symptoms also. Headaches post craniotomy is a VERY common occurance. In fact, for me personally, post craniotomy, I’ve had ‘odd’ symptoms everyday. Some have been minor, some have been anything but minor. Anything more odd than ‘normal’ (as if any of it’s ‘normal’), then it’s time to investigate.
If you report it to a Dr one of the first thing they are going to suggest is a scan anyway. Go have a scan, put your mind at rest and if there is something to follow up, you’ve already started the processes before it progresses into something major.
Merl from the Moderator Support Team
I am not a medical professional nor nurse practitioner. However I have had multiple AVM removals and bleeds. Check with your doctor to be sure.
Now having said that there are a few articles (written by doctors) which deal with recurrent AVM regrowth.
Here’s the link to a pretty technical medical research journal https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711243/
I would talk to your doctor because 1. I’m not a professional and 2. There are a lot of variable medical data that figure into regrowth of AVM.
Blessings as you continue!
When I was worried about whether I was not quite “fixed” a couple of years ago, I also read about things called “anastomoses” which are basically shunts that can be closed initially but with the redistribution of blood flow following an operation can open.
I can’t find the original article I read a couple of years ago but there is an interesting header article here (not free to access) written by Robert Spetzler no less that gives an example of an anastomosis opening during an embolisation procedure.
… so while these things are rare among rare, there are mechanisms (in your article or in this one) by which AVMs or fistulae can recur or regrow.
So I concur
I had AVM regrowth after my craniotomy when I was 17. I had an angiogram a year after my surgery, which showed the regrowth, but it was really small and they almost missed it. I would get it checked, because from what I was told there can be regrowth even into your twenties.
All the best,
I would agree that if you feel a certain way please arrange to get checked as you want to make sure you are ok… I was told the same about regrowth in children and told as I was 30 at the time I was not old or young so further annual checks were done… I only had an angio in February this year to check as a MRI came up with regrowth after nearly 10 years… Lucky enough the angio came back all clear and MRI was incorrect… please keep that in mind cause I went for months thinking my AVM had returned when it was advised it was fully removed in 2011… tough times with 3 small kids under the age of 5 one being a new born, but the angio was much easier today through the wrist compared to the groin in the past… please keep us posted and sending prayers your way that everything is ok… God bless!
I had my AVM first removed in 1978 when I was 13. Since then, I’ve had to have things done in the 80’s, the 2000’s, the 2010’s - so yeah, they come back. Unfortunately.
I understand feeling a little nerves about Having headaches. I rarely have them and if I do it’s usually just because I’m drowsy and light headed. If I have the type where it’s actually painful and it’s in the area of my surgeries were it makes me feel a little nervous. I had a cat scan one time just to check but they didn’t see much just the spots where the surgeries were. My last surgery was in 2001 when I was 11.
May i ask how rarely, once a week or more ?
Thank you for all your replies and support. I decided to email my neurosurgeon about it and he has given me a referral for an MRI and to come visit him for an appointment. Starting to feel a little scared now but I know I will get through it whatever happens!
I was 16 when my AVM ruptured. Any time I got a headache (and I had lots of them right after the surgery) my Mom would drive me from Dallas to Houston in the middle of the night to get it checked out. My surgery was done in Houston. That went on for awhile. I would say any time you are concerned get it checked out. Better safe than sorry. I am 63 now. I still get headaches. Just part of the deal. You have been through quite an ordeal and have every reason to freak out from time to time. I can’t have MRI’s because I have steel clips. That is the best test these days-so I’ve heard. Keep the faith. You will get through this.
I am so grateful for this website because I have known the terror of an AVM that erupted in my son’s head – he was 12. The emergency room surgeon dealt with clearing the first AVM. We were instructed that one might return – and in our case, it did. Madoc had his second craniotomy at the age of 14. We have had MRIs and Angiograms since then and all is well.
Like all the other commenters here, I believe you should have all concerns checked out.
1973 - me too on the clips. I’m okay with not having an MRI of my and neck. I’m kind of what they call cranially endowed (aka big head) and the thing is just too small for me.
I probably have too much fun with it - but often when I will have an Xray or a CT or such, I won’t tell them anything about my past. I’ll just wait until afterwards and as they are getting me ready to go, “So, kind of interesting pictures, eh?” Most of them will say that they are so glad I told them because they were ready to get my doctor out of surgery and say, “Did you know that this Mr. V guy has more metal in his head than…” At last count (before 2018) I had 12 clips and 2018 added another “30 plus.”
I guess I really could be radioactive. (@DickD - can you name that song and artist in less than 1 minute - go!)
No. I’m no good with music but I got the lanthanide series once in a pub quiz (and had no real idea why it was the right answer but the back of my brain was suggesting it, and it turned out right).
I do remember my first MRI and asking the radiologist if he saw anything interesting in there
I also asked him “is it a surprise I’m still walking?”.
The good answer was “no”.
But I had to wait a whole further 2 months I think for the doctor to actually look at the scan and tell me “definitely an AVM” (or, he may have said DAVF or fistula).
I’ve got clips from my surgery and my neurosurgeon is still getting me to have an MRI. Maybe mine aren’t steel or I only have couple.
C - every time they wanted to do an MRI after I got my first clips, it prompts a big discussion between local docs and the docs at Mayo who know my case on whether an MRI is okay. Every time so far it has been - but I don’t think it will again.
I had an MRI cancelled because they didn’t know what I had inside my head. I’ve always been told just “PHIL glue” but for one MRI, they wouldn’t believe me. I was walked to the x-ray room to have a look for any coils etc but the radiologist there said that if something showed, they still wouldn’t know what they were made of, so I had to postpone until they had the report from the original hospital. You need to know what they are made of, even down to batch numbers, I believe.
I’d say that if you are not “MRI-safe” to get that added to your wristband (or, if you’ve taken up the Ben’s Friends Backpack scheme, get the relevant information onto your Backpack account).
See also Who’s going Backpack-ing with Ben’s?
Interesting. I live in Israel, and on the forms we fill out they ask if she’s had any surgeries (yes) and if there’s any metal on the body that isn’t removeable ( yes, clamps)
So that leaves them knowledgeable before starting the mri
And to the OP my daughter is 12. She had a craniotomy at 4 months old with dr Spetzler. At age 5 she had a regrowth. It’s currently untreatable and she goes for annual mri.
I would strongly recommend getting it checked- even if just to alleviate any fears
Have it checked out with an Angiogram. MY daughter had her AVM removed at 16 after suffering rupture. MRI follow ups after 6 months showed no regrowth however she had an angiogram 2 years after surgery as was her discharge plan And it showed some regrowth and activity. She then underwent CYBERKNIFE surgery. MRIs after cyber at 6 months showed no more growth and final MRI again which was 2 yrs cyber was clear. Not sure i will ever feel 100% sure it’s still not growing back so in a few years we will address having testing. She’s 26 now and doing well. Prayers for everyone to be completely AVM FREE!