Um... please help? (with MRI ...)

(lol here I am again being the hypochondriac I am huh :stuck_out_tongue: )

Soo… in short - my neck had been stiff for a few days so I decided to get an MRI done for a couple of reasons. I didn’t like my first one (the clinic didn’t treat me well and in short my head was very badly positioned and it’s hard to visualize anything there - I didn’t really care because I was so scared of the machine and so sure that nothing would show up though lol. ) and I wanted to get a second one anyway so I thought, maybe they will send me straight away to the ER if it’s bleeding or something lol. I was kinda hoping to get a different diagnosis too. I just … can’t be sure I have an AVM for a couple of reasons but both did say it is one so who knows.

The doctor from my 1st insurance who should be accompanying my case says I should get an angiogram but I am absolutely NOT getting that needlessly (honestly I don’t trust them - they’re really not giving it much attention and I REALLY don’t trust catheters either so fuck them for being so uncaring) . My 2nd health insurance covers CT angiograms so I am seeing another doctor through it and so I hope he asks me to get one of those through my 2nd insurance basically. Just to make sure it is an AVM though there is little to doubt by now.

The only thing that has been making me feel uneasy (other than the fact that I never had a Noticeable Stroke to others even though by now I am used to having headaches and becoming forgetful and weird when I get too stressed out at some points in my life … ) is the fact that I have yet to see another AVM MRI displaying these… things ? I don’t know how to name the things. By now the doctors have been so “shrug” my brain could be bleeding right now and I wouldn’t even know lol. The nidus seems to be very small but even so images show a lot of… black “tangled threads” around it (on both lobes, weirdly enough) and a lot of white, too. So it’s very… confusing to me. I literally have no idea what’s going on there. And I have to wait until the 17th for the doctor to MAYBE ask for an angio CT and then until who knows when for the actual exams + results … I wish I could get them quickly because I don’t know if I should go back to uni this semester, but alas lol. Meanwhile I am working and my work is stressful so I am quite impatient :frowning:

So, in short, does anyone know what I mean and/or have MRI images of similar AVMs that they can share? Thanks in advance!

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The thing I’d say is that having a catheter angiogram is pretty standard for brain AVM investigation. Many consider it the “gold standard” for such an examination. I don’t know how much better or worse a CT scan versus a catheter angiogram is but the angiogram is certainly the more common approach.

My view of self-interpretation of images and reports is that it is fraught with the danger or unnecessary worry of reading about terms that we don’t understand or that are minor points that don’t bear the level of focus that we uneducated folk attribute to them. So my general view is one of caution of reading your own reports.

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My AVM was small and only showed up as a spot on the MRI, and did show the “void” around where the clot was when I had my bleed. I have had I think 5 or 6 MRIs, another one in a year and a half as follow up. I have had several CTs, a couple right around the bleed that showed a lot of blood, and then one gamma knife day. I have also had 3 angios, h first I have no recollection of as it was while I was in hospital.

I can say that the angio is the diagnostic method that shows these the best. My third one was used to insure obliteration. Angios can cause anxiety for sure, mine have all been fine but I think I had a little relaxer in the IV as well, and common practice. The only thing I felt was pressure when it was over and they were sealing the entry point. Access for me was the groin, a few folks here have mentioned access through the wrist. While the other scans helped, the treatment plan for me was based on the angio findings. Take Care, John.

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Yeah I know. My 2nd insurance doesn’t cover angiograms apparently which is why I am kinda hoping for that. My reports don’t have information other than basically “there’s an AVM lol” I guess to avoid these misinterpretations really. Which is why I wish I knew the BASICS - has it bled before? Is there too much damage? Just this actually. (Though I have to say being a health pro I hate the popular idea that I shouldn’t know myself in depth lol.) I am hoping the doctor on the 17th is going to be able to answer me these things but the last one barely looked me in the face so… yeah. IDK how positive I should be. :frowning: thanks!!!

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Ohh, thank you! My MRIs were done on standard 1.5 T machines but I can see a lot (even if I can’t even begin to try and interpret that lol,) which is why I am kinda confused when I try to see others to have an idea of how I should deal with this and they don’t look like mine not so much. :frowning: I just have really bad trauma of this kind of medical intervention … frankly I am not even talking about it before I can be sure what this is / what I should expect of it lol.

Well, I would say I am fairly educated in the topic - now

It goes like this:

CT Scan < it will give them an idea(possibly) that you have an AVM

MRI < it will give an actual visual of where this thing is(if it exists)

Then an Angiogram < it will be shot of the specific area of where the AVM(s) where/was found

As far as I know, the MRI will show it - no matter what. But, the angiogram is the standard for a close up look - post & pre op/procedure

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Thanks a lot!! I believed it is so too. I just don’t want to get it unless it is absolutely necessary though (obviously - meaning there’s no way to avoid surgery for me …) and the doctor gave me NO info so yeah. If he expects me to blindly trust him with a catheter lolol … not gonna happen.

Anyway while I was searching for pictures to find out what these were I started believing the white thing is probably just the drainage and I am still a bit confused as to why there are so many tangle-looking vases far from the nidus but I guess I am feeling better now … lol. Thanks to everyone :hugs:

Hi Rahzel

I do understand what you mean and this isn’t what you want to hear possibly but like others said the MRI and CT gives them a very good idea you have an avm and a slight idea on how bad or not bad it might be

They cannot see very small blood vessels and cannot see the drainage patterns unless they do an angiogram

For example they said mine looked like it was probably manageable without surgery and wasn’t a concern and it was my choice if I wanted to do an angiogram or not for peace of mind

After lots of umming and arring I decided to have angiogram. I actually wasn’t going to at first. While they were in there he said “that’s about to rupture” and “you have cv drainage”. Then after he said what do you do for work and I told him (very physical) and his words were “you’re lucky to be standing. This needs surgery asap” and told me to go home and do nothing until surgery. Then ended up having emergency surgery but that’s another story

So I just want you to have the info to make the right decision for yourself and wanted to reinforce they really can’t see that much with a ct or MRI besides that you must likely do or don’t have one

Wishing you the best as I know it’s not a fun time

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Hi, thanks! Yeah, I know. I just wanted to make sure it was an AVM at least seeing as some malformations can’t be seen on an angiogram and I can’t risk myself by doing that needlessly. I wish I knew the basics like if it has bled before. There is gliosis in my brain and I had CVA symptoms before so it is likely but no one answers just this. I really have no idea and this is what hurts :frowning: thanks for the encouraging words :slight_smile:

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That’s ok :slight_smile:

I’ll also add this. I’m pretty sure you’d be hard pressed to find anyone who has had to go though this stuff that hadn’t felt anxious/scared/confused and the like so it’s normal to feel whatever you feel. Whatever you feel is valid

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Thank you! It’s weird, our experiences … like I (us) have a thing in my brain that could bleed at any time and everyone knows and yet no one bothers to EXPLAIN, give some orientations, etc. Really distressing even more so when you are fighting alone. :frowning: Thanks a lot for the encouraging words !!