Went to pick up a head CT I had done in June at my local ER and was beyond SHOCKED to see AVM on the final report… I swear it zoomed in and out at my face, I almost fell out of my chair!!! I have an appointment next week with the nuero surgery specialist and thought What the heck… I’ll pick up my head CT! Not once did that ER doc say AVM!!! Not once!! I had never heard AVM til my VA doc called after my MRI to say I should google AVM because I had one in my brain!!! Am I crazy to think that ER doc was WRONG in not telling me AVM could not be excluded???
I was there because of headaches and “in a fog” crazy dizzy dropped 14 lbs in 2 months. I was told everything else from the final report EXCEPT AVM could not be excluded. Exact words were you have some asymmetrical calcifications, we see them all the time, you may want to get an MRI but its not something we perform in the ER!!
My experience is ER docs rarely see AVM’s unless they are bleeding. I probably had 4 ER visits including a minor stroke and they never saw my AVM. It wasn’t until I had a major bledd and stroke that they saw it.
I had a different but similar experience. After having a stroke at 28, my mother sent for my medical records. We were shocked what we found! When I was seventeen I was sent for a mri for health issues. I remember them taking the mri twice, but didn't think much of it. They apparently sent me to a neurologist. The records from the Mri, clearly stated that I had an avm in and described it's exact location. The records from the doctor clearly states that he thought their was nothing wrong, or anything to be concerned of. I really understand how shocking it can be! It is also shocking how many doctors are not well informed on AVMs! I wrote to the neurologist who dismissed it. Have you considered writing to o the head of the ER? AVMs are rare, but one in every 200/500 is not that rare! I think it is important for the medical field to understand the potential risks. I do think a patient should be told EVERY TIME an AVM is found!
Hi Misti - I definitely think the ER was wrong in not sharing with you that you had an AVM. Since many ER docs do not know what an AVM is, (although you must have had a good radiologist who does know what an AVM is), it doesn't seem that surprising. It's a good lesson for us all though that anytime we get an MRI or CT Scan, to always get a copy of the report on paper and CD. That way we can actually review it and share it with other doctors. Hopefully your VA doctor is familiar with AVMs, otherwise, you may want to check out some Doctors that people recommend on this site that are near your home. The only good thing to come of you picking up your CT scan, is now you have information. You are the best best advocate for you Misti and learn as much as you can about your AVM. Keep us posted on what happens to you. Hugs!!
Thanks All!! Yes… I will FROM NOW ON… ask for EVERYTHING and carry it with me! My sister has been a RN for almost 14 yrs and had no idea what an AVM is til I said I have one… I agree that the radiologist was good to see it and not rule it out… but the ER doc “dropped the ball” when she didn’t even mention it!.. All I wanted was answers!!! I was so very sick. I wasn’t looking for “magic pill” , just answers!! She had one! It was a maybe but it was a direction and it would have saved me so much time!! GET YOUR RECORDS KNOW ABOUT YOUR AVM BE YOUR OWN BEST ADVOCATE!!! Smile
Misti..That ER doc was totally wrong. I think you should call him and tell him what you know and that finding an AVM means he has to send you to a neuro doc immediately. You will be teaching him so that he never does this to another person!
PS...It was my dentist that sent me for the MRI and my AVM was discovered. My dentist told me to see a neuro doc immediately. A DENTIST....that worries me about an ER doctor not knowing that you should see a neuro doc ASAP.
I agree… I have been diagnosed now thru an MRI done by VA doc and seeing a specialist next week! But we wasted sooooo much time on West Nile, Cdiff, Lyme disease, thyroid… before the MRI (bc we were thinking MS) if ER doc had said Hmmmm may be an AVM, we could have started there!!! Nobody and I mean NOBODY thinks “you know what? I think it’s my BRAIN!” right??? I can guarantee we all were shocked when doc said BRAIN! lol
I am a veteran! Smile US Army. Fortunately, that qualified me for a VA insurance program for low income Vets and VA is veterans affairs!
… I was NOT insured when I got the head CT at the local ER and they failed to disclose that an AVM could NOT be ruled out… I then found out that as a VET I qualified for VA ins and was blessed with a great VA doc who never once “made me feel like I was CRAZY”…
Hi Misty, just wanted to share a couple of thoughts. First I'm no doc of any kind. However, I worked in an ER (5 yrs.) in San Antonio, TX. It was a large hospital so we had all specialty docs available 24 hrs. a day. Having said that, not all ER's are the same. They are actually rated as to what level of care they can provide. In small ER's they have to wait for radiologist to officially read DX findings when they get back to work unless problem is very evident. Depending on the size of AVM, and if it was done with contrast,it may not have been easily visible. The responsibility belongs to radiologist to report findings back to ER doc and to report to your primary doc what was found. If you didn't have a primary doc it makes it difficult. I'm not defending what happened, I just want to share what I know. The most important line in the report is "AVM can not be ruled out" which indicates suspicion and that your doc should follow up to have it ruled out. The best part is that you now have good information and can go forward. I hope that you have a low grade AVM and that you have excellent results with the treatment you choose. It can be very frightening to walk around with an AVM, at least for me. The VA system has the best resources and connections to keep you moving in the right direction. Thanks for your service to our country. Positive vibes for your next appointment.(Sorry it's so long, lol.)
Thanks for that! Smile… I’m learning! I want to be an"educated" patient and I’d encourage all to get your records!!! Know your stuff and have family/friends research with you and go to appointments so you can’t just see “the negative”!! As far as the radiologist sharing… The report states all findings were discussed with the ER doc before my release. Just wish do much they would have said it can’t be ruled out! If I had picked up my records, I would have known and so I have learned this lesson!!! Smile