I was diagnosed with Multiple Sclerosis in 2010. So I have had my fair share of MRIs. I have been having stabbing headaches/ice pick headaches for over a week. Last Wednesday, I started having neck pain on the same side. Thursday it was really bad so my neurologist told me to go to the ER to see if they could find the cause. Basically they said that they were tension/stress headaches. However, the ER doctor said that the right side of my head looked good on the CT scan (the side my headaches were on). But then went on to say, you know about the AVM on your left side, right? I had no idea. And then reading about it is scary! I am hoping to hear more from my neurologist but I thought I would check in here. Thank you.
Sounds familiar, when I went to ER with an unbelievable headache the Dr. initially thought stress headache, but did a precautionary CT scan. Quite the scan it was, onto the stretcher, IV, ambulance to the Health Science Centre from our little hospital. Admitted, more scans including the angio where my AVM was discovered, and the reason for the bleed. A long way to say, on an MRI the location of my AVM shows up but not the actual AVN, the angio is the only thing that shows mine. John
this test was used to diagnose my avm…
i think MRA is also good. when i went in to neurologists office recently, they did MRI and MRA. MRI showed how my brain matter looked. MRA showed how the blood vessels in my brain looked
Can an AVM be missed on an MRI? In short, yes.
Although an AVM can be picked up on an MRI, often due to displacement of brain structures as large AVM’s may put some pressure areas of the brain, and MRA is a more precise image of the arteries/vessels within the brain. A contrast solution is sometimes administered via IV to enhance the image by highlighting the vessels.
I have lost count of how many times I have been told that my headaches were everything from growing pains as a child, idiopathic in nature, or tension/stress headaches (The tension/stress was more from being told there was nothing wrong when there obviously was “Ohh don’t worry. It’s all in your head…”), then when an issue was identified it was like some big surprise to the dr’s. I’d been telling them for years something just wasn’t right “Ohh look what we found…” gggrrrrrrr
You obviously have an appointment with a neurologist and that’s a good thing. If you hadn’t that would be my next recommendation. Some AVM’s can be small and cause little issue and depending on size and location will depend on the course of action. If it is small they may recommend to wait and monitor but if in a location of concern they may recommend treatment. There are a few variables but your neuro should inform you of all of that and your treatment options if they deem it necessary.
As stressful as it all is and by no means am I minimising the concern, stressing majorly is not going to help, just be aware, not alarmed. Wait until you have your neuro appointment and see what advice you are given from there. Now, I say this but I was an absolute mess, stressing out to the extreme, not good. But the reality is there is nothing you, personally, can do about it, from here it’s up to the medicos.
Best of luck with it all and please let us know how you get on.
Merl from the Moderator Support Team
I just wanted to keep y’all in the loop. My neurologist office called today and said after my neurologist reviewed my CT scan, if he saw anything, he would contact me to discuss it. Shortly after, his nurse called me back again and said that he wants me to get scheduled for an MRI and that they will call me to schedule.
@babybrice Hello and welcome The short answer is yes. I had a massive unrelated rare stroke and was getting reg MRIs and MRVs cause my stroke was caused by 5 blood clots…and my AVM was missed…I had just had an MRI/MRV and mentioned that I was hearing whooshing and passing out and then ordered and MRA with spin labeling and it showed up. And it was way more complex than they thought when they did the angiogram which is the gold standard to really knowing what they are dealing with.
I am glad you found this site. We are a good group no judgement and feel free to ask anything and to freak out here!
Thank you guys so much! I don’t feel like I can say much to my friends about it, but I am freaking out a little! Especially since the phone messages from my neurologist went from “he’ll call you to discuss anything from the CT scan if he needs to” to “he wants you to go have an MRI done” within minutes of each other. Trying to not think about it and hopefully I can get an MRI ASAP to get some answers.
Welcome to the group. Discovery of an AVM is a shocking time and you need to be generous with yourself and allow yourself time to take in the news. That you’ve had some icepick headaches and neck ache is a typical sign for some people, so your doctor may want to deal with you quite promptly.
Once you’ve had your MRI, more detailed scans may be appropriate and treatment options suggested. An AVM is a rare occurrence so your doctor will not expect you to know anything about them and should explain everything nicely. However, if you have any questions that you want to ask us, just ask! We are here to support you at every stage. I do recommend you find someone close – family or close friend – who you can talk to, if you can. It is good to have someone who understands what you’re trying to deal with.
Very best wishes
I did find out today that they got the approval from my insurance as of today and that he’s not sending me to my regular MRI place. He’s sending me back to the hospital (they are part of the health system my neurologist is in). So I pray I get some answers. Unfortunately the lady at the doctor’s office told me the window of this appointment can possibly take place is between May 8- June 6th. I pray I don’t have to wait that long!
That’s great that your insurance is sorted! Just take it all one step at a time. That it moves steadily closer to sorting it all out is a good thing. Hopefully, it will give you time to be comfortable about it all.
By contrast, I self-diagnosed in April 2016, saw an ENT consultant in Aug 2016, got an MRI, saw a neurointerventional radiologist in the November and had to wait until April 2017 for an embolisation, so I think 6 June is pretty good. I know it feels a long time to you but trust me, it’s not
All the best,
I had a CT with no contrast years before my AVM was discovered and nothing showed up… A CT with contrast near 10years later picked up the AVM though… The concern I have is i had many follow up MRI’s after my surgery as the neuro didnt want to expose me to excessive radiation, which i can understand and i was told with contrast a MRI was good enough… Hope this helps and wish you all the best on your journey to becoming a SURVIVOR… God bless!
There are two kinds of “missed” - the technology not being able to find it, or a human not seeing it. The latter happened to me, at least once, almost certainly twice.
I had a full brain and spine MRI w/wo contrast and an MRA about ten years before my bleed. Very sadly those images and reports are lost as the place that did them didn’t retain the records; my primary’s office also culled them. I had had a weird episode where my right leg suddenly disappeared - at least that’s what it felt like. I could continue to walk on it but I had no feeling or proprioception, no sense of pressure. Not at all like it had fallen asleep. Luckily that didn’t last, and although they did the MS protocol they only found that I had some white matter lesions on my left hemisphere, consistent with my history of migraines.
I had a follow-up, brain only, six months later to make sure the lesions weren’t changing. They weren’t.
Miraculously those images were still in the system ten years later when I had my stroke, and afterwards, meeting with the neuro, he was able to pull them up and show me that there was indeed evidence of the AVM. He really, really wanted to see the earlier ones, including the MRA, but it was gone.
I have my MRI today! Luckily the hospital they are sending me to is in the same network as my neurologist, so hopefully I will hear results quickly. I just downloaded the patient portal app and was a little surprised to see the AVM listed under my MS as one of my conditions. I have also been having some weird heart issues lately (like feeling it flop and then nearly blacking out), so I am going to the heart center this week. I am feeling like a hot mess lately. I hate being slowed down and asking for help. I am a mom of three boys and a teacher. ️
Good luck today, and I’m hoping you get some answers. In respect to your heart, have you heard of Pre-ventricular contractions (PVC)? I have them from time to time, might be worth a google when you have some time. I hated to ask for help as well, but when I needed it people were happy to help, and most want to help. I know I’ll take every opportunity to pay it back in some way in the future if needed. Again, I hope today goes well, take care, John.
So I had the MRI on Saturday and I still haven’t heard back from my neurologist today (Tuesday). When I called yesterday to see if they had received the results and to see how long it would take to hear back, the lady looked at my information and then asked for a good number for my neurologist’s nurse to call me back. Tomorrow is a workday, so maybe they will call tomorrow and I can have a friend/co-worker listen with me so I don’t forget or miss anything. This waiting is driving me crazy and I am looking forward to getting my cardiologist appointment over with Thursday too. I just want some answers. I am sure all of you understand that…
Okay, so I finally got a call back from my neurologist office. The nurse called me and said that my neurologist did not see any new or active lesions (what they typically look for when I have a MRI for my MS). So I asked about the AVM and her response was “AVM?”. I told her that I thought that’s why I thought my neurologist sent me for the MRI. That I had called and left a message for it. She said she was looking but didn’t see anything and put me on hold. So my neurologist got on the line and said “Did you have a question for me?”. So I go through the whole thing about the ER visit and how the ER doctor said something about it. He said he didn’t see anything on my MRI. I am confused because I have been having some heart issues too, and asked the cardiologist yesterday if the AVM could be related to the irregular heartbeat/flip flop/dizziness that I have been having. So he went through the ER doctor’s notes online (all of these doctors are in the same network including the hospital we went to). He found the notes and explained what the sylvian fissure was and that there were some blood vessels there on the left side, but that my neurologist would be able to explain it better. I feel like I totally caught my neurologist off guard, and despite my patient portal listing the AVM under my MS for my conditions, he had no idea what I was talking about and kind of came up with a fast response. Told me that the ER doctor was wrong. I don’t know whether to be relieved or want a second opinion.
I am all for second opinions. It’s best to get one independent of your doctor, if possible. Many institutions will do a second opinion on pathology, so you aren’t limited to places you can travel to easily. Surely imaging can also be given a second look without you having to travel.
Is it possible to reach the ER doctor to ask for more information about why he put that AVM reference on your report? It’s possible that it was a plausible reason for your symptoms, not a definitive diagnosis. But knowing what his thinking was on this might be helpful.
Good luck with everything.
The ER doctor didn’t think that it had anything to do with the symptoms I was having at the moment. She just mentioned it to it, I guess assuming I already knew since I do have regular MRIs. It’s funny you mentioned contacting the ER doctor because I told my husband today that I may contact the hospital to let them know what my neurologist said and ask if they can look again to reassure me. Thank you so much for your feedback. I really appreciate all of you.
I’d consider talking to a neurosurgeon about it rather than a neurologist. I’ve never seen a neurologist and while some people do refer to neurologists, most seem to be advised by neurosurgeons.
So I called the hospital where I had the CT scan and was told that I have an AVM. I talked to a very nice man and he told me that indeed the radiologist did note a small AVM. He told me that he could not get it reread but that I should definitely get a second opinion. He said I could either come back to the hospital or contact my regular doctor. I have contacted my regular doctor and I am waiting to hear back. Sigh…