No confirmed diagnosis, AVM/AVF? Prob with Contrast die, angio coming up

I had been told I had an AVM in the basal ganglia area. I had an MRI, seen 2 specialist and then this week had a contrast CT and seen the Neurosurgeon. He said he was not sure if I had an AVM and may be and AVF. The scans are unclear and he needs to do an angio to see clearly and determine if it is dangerous or just a nuisance (pulsate tinnitus/brut affecting hearing). All pre op done following appt yesterday and will be scheduled w/in a month.

I’m worried about a couple of things.

  1. I had a reaction to the contrast dye. burning in a pinpoint area of my neck each time they gave me contrast, then tightness in my lungs and after affects of sore throat and problems with my asthma. Neuro gave me prednisone and benedryl to take preceding the angio, and my GP wants me to increase my cortisone inhaler as well. Neuro says worst case scenario is I will need to be intubated and admitted for a few days. And I understand the logic of needing to find out what it is and the risk, but I’m like “omg, ya, worst case, no problem, walk in the park… blah”.

  2. Potential for stroke. Does not run in my family, but lots of Illness, loss and death in family this year so its making me worry about the worst case.

Has anyone had any similar reactions to contrast dye? I’m wondering if it could be the same, or totally diff reaction next time. I’ve had one in the past and was fine.

This angio is new territory for me. If it is dangerous, they will need to do contrast in the future

Catherine, i think @Angela4 has some effects with contrast material and other things. Chat with Angela.

My experience with contrast is much less than with you but each time the contrast went in, it gave a very hot flush feeling in the affected area, so some “hotness” is definitely normal. It does sound like you’ll need proper management but it also sounds like the neuro is not fazed by that, so be confident he knows what to do.

Best wishes,


Thank you Richard. I did get hot/warm sensations that were not concerning at all. My neck was more like a searing burn, like putting your hand over a steaming kettle. It wasn’t an area, it was pretty pinpoint. I feel like both my Neuro and GP understand the need for proper management, and def on top of it. I feel good about that. Just not a fun ride ahead.
I’ll touch base with Angela.

Hello @clauze and Thank you @DickD Richard for the tag-

So prior to all this avm/avf stuff I had bad migraines and had loads of MRI’s with contrast. Then in 2006 I thought I had food poisoning and was scheduled for an ovarian surgery. My gyno said I had a food allergy. So once I got tested my dr said I was severely allegeric to shellfish and to not have Iodine which is in the contrast for scans and they use it for your angio as well as some radiation.
So the next year I was getting another MRI and I told the radiologist what my doctor said and he consulting with the dr on site and said I would be fine…
After the test I ended up passing out in the changing room and luckily another lady heard me fall. - I also suggest you get tested for shellfish allegery after all this- There are over 200K adult onsite food allergy each year.
The way the body works is each time we have what ever we are allergic to and sounds like with your throat itching you are definitely allergic, with each exposure the reaction is worse. You should get a medical bracelet to put your avm/avf and your allergy to Iodine.
I had a massive stroke where your avm/avf in 2011 unrelated to avm but caused my DAVF to form. I had to relearn to walk and talk and was in a coma for 5 days.
Then 8 months later they found the DAVF doing a MRA with spin labeling- That is what test you should have-

Be sure to ask the doctor how many people he has worked on with the type of avm you have and in the same location- You want someone who has done a ton of these. Also ask how many deaths and strokes-
After my 1st angio/embolism I did have a small stroke but my DAVF was complex and retrograde and they were in my brain for almost 8 hrs and I was still healing from the massive stroke I had so I think it was just to so much time in my head. You have to calm while they are doing the angiogram you are awake and you can see what the drs are seeing, Its very strange.
Also dont be afraid if its a teaching hospital to say you dont want the fellows or interns working on you - fine for them to watch but this is part art and experience and the part of your brain - The basal ganglia are responsible for voluntary motor control, procedural learning, and eye movement, as well as cognitive and emotional functions- so its very important to keep healthy.
I am so sorry you are going through this.
be sure to take the meds as prescribed I forgot the second angio so they sent me.
For me i get super constipated after and I get bad eczema all over my head and face.

HI Angela,
Thank you for the reply and I’m sorry for the late response. Good point about the teaching hospital.

I had the angio and they were cautious about my reaction. I also ensured they put an allergy band on me although the allergy isn’t confirmed. I was thinking about writing it in black marker on my arm. I was on prednisone and benadryl pre and post and its day 3 and my asthma and throat are still unhappy. I luckily had prednisone and benadryl at home I’ve contiued to take and will go to dr or ER if it doesn’t let up soon.

I hope that my avm is not high risk bc I don’t want to have to deal with contrast dye again.

You’ve gone through a lot, thank you so much for sharing your experience and advice.