Avm seen in contrast ct not in contrast mri

Hi everyone,

Im seeking some advice and im at a loss where to go. For over a year now ive had constant burning, numbness, weakness, and tingling in my neck and left arm. My first mri was without contast and they diagnosed me with stenosis and bone spurs at c6-c7. I was then sent for a ct guided corticosteroid injection. The radiologist used contrast to make sure he avoided my blood vessels. He stopped the procedure because he found an abnormal cluster of blood vessels right where he needed to inject and suggested i had an avm there that needed further imaging. Ive recently had another mri with contrast done and my gp told me today that they didnt see an avm. He also seems unsure of what to do next?

I guess im wondering if anyone else has had something like this happen? Should i get another mri? Could it have been missed? If the mri is more accurate, what did the first radiologist see when he tried to do the ct guided injection. Im really confused and tired of suffering with this. Can anyone give me some advice please?? Im in australia if that makes any difference.

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I think I Know what you Are Going Through !!! I went through what you ARE experiencing except my AVM was on T5 my spinal cord.
YOUR AVM is the KEY.
My fingers and arms are compromised. I am available by phone
I live in Oro Valley AZ. My mobile phone is the best way for me to share with you WHAT I have learned about AVMs where ever They are in YOUR body.!!! Believe me!!! I can help you with YOUR Next steps!!!
Again I live in Oro Valley which is basically Tucson

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Have you had an angiogram? Doctors doubted my husband’s AVM until his angiogram was able to confirm the diagnosis. Hang in there and keep advocating for yourself.

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I had a CT with no contrast in 2002, before my AVM was discovered in a CT with contrast in 2010, which confused me.

A couple years ago I had a routine MRI & was told the results showed AVM had returned… as a precaution my neurosurgeon requested I do an angiogram, which confirmed no issues at all… definitely get an angiogram done if possible as it is considered the golden standard in this area… hopefully there’s nothing serious there… God bless!

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I has a sdavf and the sooner you get it addressed the better. I agree with the angiogram and like I say the sooner the better. I am still having effects of not getting taken care of soon. It took a year to get my diagnosis and it has left me unable to walk without crutches and even then it is limited. I use a power chair or scooter most of the time. Each day is great and a blessing I you will pull through. I hope the best for you.

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I have had two MRI s and the serpegenous vessels were seen in one - in the other the neuro surgeon said “There is something”

DSA of the spine - first time the test failed to capture the AVM. The second time they nailed it -

This gave the surgeon the precise location and extent of the AVM.

So four imaging tests to nail it.

That has been my experience.

I am truly sorry you have this condition .

Best Wishes - Get Well, Soon and Completely !

Karthik

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@NightOwl

The impression I get from reading lots of posts round here is that MRIs aren’t always that clear. What you can see on a scan with contrast compared to without contrast also varies (though I don’t know how pivotal that is).

What I can say is that usually what follows on from a suspicion aroused by an MRI or CT scan is to do a catheter angiogram, as someone else has mentioned. This is to guide a fine tube (catheter) to specific arteries in your body using x-rays and then inject the contrast material at a number of specific points, one at a time, to see that the blood flows as expected. Where there is an AVM, the contrast will be seen flowing through the AVM and the relevant vein, very clearly on x-ray.

A catheter angiogram (we usually just call them an angiogram here) is a more invasive procedure than an MRI but it is what you might call the “gold standard” for looking at these things.

As such, rather than repetitive MRIs, I’d expect a more detailed examination of the area using an angiogram. Insofar as it is a more involved procedure, it does carry risk to you and therefore docs will only want to undertake an angiogram if there is evidence that the more detailed examination is warranted. However, in a Mexican standoff like this, maybe ask if an angiogram would show up what is needed. There’s a certain amount of self-advocacy needed in hospitals sometimes.

Let us know how you get on / what you decide to do because we are definitely interested to know.

Very best wishes,

Richard

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Hello @NightOwl
My gf used to run the MRI Dept at Stanford which is great because I never have problem getting an appointment. But she also educated me that if by any chance I was to get an mri, MRA or MRV anywhere else to always ask what T level the machines are because the older the machines are the less likely they can see
You want at bare minimum a T3
Also as one of my favorite drs who is my orthopedic surgeon says you can only see about 90-95% with them. Every surgery I have had from rt cuff, gall bladder, ovarian, and AVM has been far worse than the scans showed.

The only way to be sure is to have an angiogram that is what someone on here once said is the Gold Standard to know 100% what our AVMs are truly up to in our bodies.

Angela

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Hi everyone,

Thank you all so much for your replies and well wishes, ive been moving house the last week so havent had much time to reply or really think.

So far the only imaging ive had done is 2 mri’s (one contrast, one not) and the ct where i was meant to have the injection. Im concerned my gp doesnt know what to do next. When he told me my results from the contrast mri, he sounded like it was all done and dusted because the mri didnt show an avm. He said he would ask the radiologist whats next because the numbness and tingling and weakness are getting worse. Ive got an appointment with him next week. Should i just ask for an angiogram and a referral to a neurosurgeon?? How urgent is this type of thing?? Is there anythibg i should be avoiding?? After one of the big days moving house i was in so much pain and discomfort i was close to going to the hospital. Is there any point in doing that? I’ll also note that im on norspan and tramadol for another chronic pain condition and it doesnt seem to help what’s going on in my neck. Does anyone know of anything that actually helps while waiting for answers?

Im also looking at changing jobs, should i be aiming for something not too physical? Like, because its showing symptoms its likely to progress? Im sorry for all the questions, im just so unsure and the information available on the internet is mainly based around brain avms.

One last thing too, is anyones avm associated with a vascular disease or other disease??

Thank you all again, im so glad ive found a helpful and supportive community. Thanks all so much again for your replies xx

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I basically did this about 6 months after my embolisation because I had a week of feeling very dizzy and I was concerned that something had been missed. In fact, I asked for an MRI but somehow along the way I got scheduled for an angiogram as well. Rather than turn it down, I did it anyway. The result of all of those scans told me “everything is ok”.

So I’d say you could ask for an angiogram. The radiologist should explain the risks of it to you and if they aren’t in favour of you facing the risks, they will likely say so.

The way it works is that they make an incision into one of your major arteries – e.g. at your groin – and navigate a very fine catheter (tube) up to the relevant location to inject the contrast material locally. The risks associated with it are: complications with the entry site, a risk that the means of steering the catheter ruptures an artery (it can tear) or that it goes into a vessel that is too narrow (and causes a stroke). You can also prove allergic to the contrast. I’d say pretty much everyone with a brain or spine AVM has had an angiogram, so it is perfectly gettable-throughable but it isn’t without risk and I can remember one person here having a bad time of it. It is almost certainly the clearest way to see what’s going on.

I’d say ask about it and the doc should talk you through the risks so that you can make a decision you’re comfortable with. I’d argue there is no risk-free path forwards in neurosurgery.

I don’t know so much about spinal AVMs but for brain AVMs, we tend to think of these things as vitally urgent but my experience in UK hospitals is that the surgeons are very cool about how urgently I needed to be seen. As a brain patient, if I had signs of a stroke, they would want to see me in the ER immediately. Otherwise, I had to wait in line. My initial diagnosis was in August 2016. It took until April 2017 for me to have the embolisation.

Regarding spinal stuff, I hope some of the other spinal guys will share their experience but I think it is fair to say that nobody will criticise you for going to the doctor for things that worry you and if anything sudden or severe gets you, the ER is the place to be.

During my wait, I ended up in the ER – suggested by my general practitioner – but the reality was that I had no acute symptoms and the ER guys really didn’t want me there. However, while I was there the one piece of advice they gave me was to watch my blood pressure (so as to avoid a rupture). They recommended cutting out cigarettes, coffee/caffeine, chocolate and alcohol, all on the grounds that these things spike your blood pressure. I’ve also read here of people being advised to avoid straining of any kind – lifting heavy weights or anything strenuous in the bathroom or in the bedroom(!) I was quite keen on chocolate and coffee, so I cut those out and it actually helped me with some of the discomfort that my AVM was bringing.

Hope these thoughts help.

Richard

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There are conditions that bring AVMs with them but these are very rare. Being a large international community, we do have patients with underlying conditions but most likely, there is nothing driving your AVM and there is nothing else to worry about.

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Hey NightOwl,
My name is Merl I’m a member of the modsupport team on Ben’s Friends. I see you’re in Sydney, I’m in Adelaide, so I have an idea of some of the systems you’re trying to navigate.
You’ve been given some really good info here by the other members, some I’d like to expand on.

Totally agree. A catheter angiogram is like putting a camera inside of the vessel and following along the vessel. Where an MRI is scanning from the outside.

The magnets in MRI’s are rated in Tesla (T). T1 can view tissue, T2 can see fluid, T3 can see the flow of fluid. I’m a neuro patient and I too have been told I need a minimum of T3 with contrast.

Within the neurology field ‘Wait and watch’ is common. Let’s face it, nobody wants brain/spinal surgery and if it can be avoided, that would be even better. I too was given the ‘wait and watch’ line, but my symptoms were chronic bad already and getting worse, waiting wasn’t going to improve the situation. I tried to explain just how bad my symptoms were, but it was all minimised “ohh it can’t be that bad…” I was told. Then I was told I simply had a low tolerance to pain. Others cannot see your pain, they cannot feel your pain, so how would they know? I became a VERY strong self advocate.

These are both strong opiate medications. Presently, here in Australia, there is lots of fear being spread around regarding opiates and addiction. This has been fed by the U.S. opiate crisis, to the point that rather than being a reliever these meds are often identified as a cause of ongoing issues with pain. And it is true, addiction to pain meds is real BUT to be labelling people as addicts rather than trying to manage symptoms discredits genuine patients with genuine need. But don’t be surprised if this is identified as a contributing factor.

There are a few variables that all need to be taken into account here such as size, location, surrounding structures, risk of rupture, severity of symptoms etc. This all needs to be assessed by a neurologist or neurosurgeon often in collaboration with a radiologist. It isn’t something we can answer. Some people can have an AVM their whole lives but have no symptoms, with it only being found incidentally via another scan like a dental scan, but then for some there can be no end to symptoms.

NEVER apologise for asking questions. NEVER. When I first arrived here I had nothing but questions and they were all running through my mind at a million miles a second. If I apologised for every question, I’d still be apologising today. Our information hasn’t come from a textbook. We know just how scary it all can be. We know because we’ve lived it too, and who better to ask than people with a lived experience. The members here are more than willing to share, so ask away.

Merl from the Modsupport Team

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@Franz_K is in Melbourne (with a spinal AVM) so you’re not alone.

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Hello
Is there anythibg i should be avoiding??
Well both times when I had my blood clots and when they first discovered my AVM / DAVF they told me not to lift weights which was my preferred way of exercising and told me just to stick to walking. So if you have a very physical job of course discuss it with your AVM neurologist and surgeon, but I couldn’t even go back to my stressful trading job .
Prior to my blood clots I was scheduled to go into surgery for Rt cuff surgery and was put on tramadol but could only stomach 25mg the same as my maine coon cat and it really did not help my head ( of course I didn’t know I had clots in my head ) after they tried to give me stronger drugs ( this was before the opioid crisis) but they just made me sick and really didn’t help my pain anyway.

Then they tried different shots in my head and I think one that might be related to the other drug you mentioned, was a shot bupivacaine and I had a bad reaction and felt like I was having a heart attack for about 24 hours.Again did nothing for my pain.

My pain neuro says it’s important to start the day with protein. I take 20 mg or oral Ketamine on really bad days, and marijuana gummies for sleep and pain. Here in California it’s legal for everyone, but prior even my marijuana dr is a neuro and she thinks it works better for pain that opiates.
But we are all different and something may work better for some and not others. I also use ice packs a great deal.

Just listen to your body , advocate for yourself and bring someone with you who will advocate for you. Studies have shown that patients get better treatment when they have another person with them.

We are here for you
Hugs Angela

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Please get to a neurosurgeon ASAP. I knew something was wrong with me and started seeing specialists. The initial MRI missed it. Once more symptoms appeared, for instance urology, I was brought in for more tests. An MRI with contrast showed swelling in my spine, so more tests. Finally, they found it in L1/L2.

In an angio two weeks later, the neuro radiologist was able to seal off the leaks with a glue like substance. I was fine for awhile but the symptoms reappeared. They couldn’t get to it via an angio this time so I had a laminectomy. I’ve had a total of 5 angios and the laminectomy at this point.

The problem with spinal AVM’s is they can stop the damage, but it can’t really be reversed. Time is important.

You need to see a neurosurgeon that is experienced with AVM’s, not just any neuro. A quick google search in Australian shows neuros and neurosurgeons that include is as a specialty. Get to one that has experience ASAP.

Good luck

Hi everyone,

Thank you all so much for sharing your experiences with me, i really appreciate it. Im sorry i havent been replying, I’ve been feeling rather overwhelmed by all of this so have been trying to not think about it too much until o get some answers.

Ive since seen a neurosurgeon and she sent me for a cta with the original radiologist that spotted it. They’ve both decided that its nothing. They reckon it was because they injected the contrast dye pressure was too high? She also said my nerve seems fine and to just go to physio again. She also said that the first scan where it showed stenosis and bone spurs were overstated by the radiologist. Im still experiencing the same symptoms and feeling pretty dismissed. Should i seek a second opinion?? She seemed like a very nice dr but i dont feel like I’ve gotten to the bottom of this. Has anyone experienced this or got any advice??

Thank you so much, im struggling to navigate this

Why not? Like you say, if you’ve still got symptoms of something but no underlying cause or diagnosis, it isn’t really a step forwards, is it? If it were me, I think I’d be as unsatisfied as you sound.

There are definitely people here who’ve been round the circuit a few times: I think it is also fair to say that things “seen” on MRI etc are not that clear and can be mistaken, so the doctor’s most recent response could be correct. But I’m with you as to the final question, “So, what is going on, then?”

An option you could even try is to use the services of one of the major neurosurgery practices of the United States: they will, so far as I understand it, undertake to review your reports, scans etc and form an opinion on what it is and what might be done through what is called the “remote second opinion program” on their website. Last time I looked, it cost $200-$400 (US) to use that service, depending on where you send the files. It’s not an impossible amount of money.

Thanks so much for your reply, this is such a difficult thing to navigate. That program where you send scans to sounds amazing! Im definitely going to check that out, thank you for that information! I guess im just frustrated and confused by the whole thing. I might try and find a neurosurgeon that specialises in avms as i dont think the one i saw was. Im not sure if i should push for an angio too… i dont know, i think ill start with the that program you mentioned and go from there. Thank you so much for your guidance, its very much appreciated.

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I’d say a neurosurgeon who is familiar with AVMs would be ideal. These things are rare and I’ve read of several people (particularly in the States) indicate that finding someone familiar with AVMs (and other vascular anomalies) is definitely the right thing, too.