I had a more advanced MRI in December and I just got the results…
My problem was that on the previous MRIs I was diagnosed with a cerebellar venous angioma, but my symptoms are very similar to those of an AVM and I don’t know how to explain it
I ended up feeling sick all the time…I can’t remember the last time I had a good day…
Finally, I got the results and they say:
MEDICAL REPORT
Investigations:
MRI head + angiography with contrast agent:
Referral diagnosis: venous angioma
Native and post-contrast cerebral MRI examination and with MR angio sequences reveal
(examination protocol: sag T1, axis T2, 3D FLAIR, axis DWI, axis SWI, axis 3D T2, angio-3D
ToF arterial, angio-2D TOF venous, axis 3D T1 pre- and post-contrast, subtraction):
no established ischemic or hemorrhagic lesions;
no space-replacing formations, diffusion-restricted areas or pathological intra- or extra-neuraxial infra- or supratentorial contrast uptake;
demyelinating microlesion without diffusion restriction or contrast uptake, with non-specific MRI features, left frontal;
venous angioma with a “jellyfish head” appearance in the right cerebellar hemisphere, without signs of local-regional bleeding;
midline structures not deviated;
symmetrical ventricular system, of normal size;
pericerebral fluid spaces, cortical grooves with normal MR appearance;
cerebral vascular structures with homogeneous post-contrast flow, without signs of thrombosis;
vascular loops of the bilateral AICA, with penetration into the CAI level, without associated neurovascular conflict;
otherwise cerebral arterial axes with normal morphology, without flow abnormalities on the fast-flow MR angio sequences performed, without dissection folds or aneurysmal dilatations;
cerebral venous plexuses with homogeneous flow on the slow-flow MR angio sequence performed, without signs of thrombosis;
no arteriovenous malformations detectable on MRI and post-contrast angio sequences;
cranial nerves with signal and morphology within normal limits, symmetry preserved;
hypoplastic aspect of the frontal sinus;
otherwise sinus cavities, orbits, mastoid regions, UPC, bilateral CAI, sellar and parasellar region with normal MR appearance
Conclusions:
Right cerebellar venous angioma with typical “jellyfish head” appearance, without signs of
local-regional bleeding.
Small supratentorial demyelinating lesion with non-specific characteristics.
And my symptoms are bad…and a lot…and what are doctors saying?
That the symptoms don t match what i have…
So now…..i happy to anounce that i will die like an idiot because of the shitty country i live in…
That s awesome….
Ok, so you’re talking to a bunch of patients here, not medical professionals.
I’m going to guess that an AVM impacts people’s brain in two main ways:
By diverting blood flow and potentially starving some areas of “normal” pressure and normal flow, which in some cases can lead to necrosis where the flow falls below that needed to provide oxygen, nutrients etc.
By creating increased pressure on parts of the brain, sometimes in a similar way that a tumour presses on things and disturbs or inhibits the normal function of that part of the brain, sometimes perhaps just through high pressure blood in places it shouldn’t be.
You’ve got three “interesting” things going on, as far as I can tell: the venous angioma/DVA, some demyelination and the hypoplasia of the frontal venous sinus. It looks like you don’t have any fast flow through the DVA, which might otherwise be a bit like an AVM.
What are the doctors telling you re next steps? You need them to tell you, given your symptoms, whether they plan to do any different scans to try to identify anything else or whether they are convinced there’s no good reason for an angiogram, for example. MRIs are limited, though the actual DVA seems to have been clearly seen.
Sometimes there’s a CCM associated with a DVA, though you might expect to see a little residue from microbleeds if that was present, yet there’s no sign of a bleed; and sometimes there is an AVM associated with a DVA.
In regard to whether the DVA is pressing on something to give you symptoms, this text reads to me as though there’s nothing obviously pressing on anything:
no space-replacing formations…
midline structures not deviated;
symmetrical ventricular system, of normal size;
The main, possibly only, reason anyone would do neurosurgery on you would be to address a stroke risk. So that the MRI clearly shows a typical formation for a DVA is a good thing: you should celebrate that it isn’t an AVM because it is the stroke risk that is the main thing we brain AVM folk worry about.
DVAs can have a high flow associated with them, so ask about that but again my reading of the report is that there’s no high flow visible:
without flow abnormalities on the fast-flow MR angio sequences performed
So the things you’ve got that are a bit unusual, apart from the DVA, are the demyelination and the hypoplasia. Apart from being comfortable about the absence of an AVM, the things to ask the doc about are what symptoms they might expect from the demyelination or the hypoplasia: are these giving you the symptoms? And would they expect to do anything about them? because they might still not.
I hope something in the things I think about out loud might help. It’s the only thing I can do is to think out loud sometimes!
Hi Richard!
Thank you very much for always being here and answering
You always help me. I really appreciate it!
As the title says…I’m very upset because I’m 100% convinced that it’s not a DVA…
If you remember, I told you in the past that because of the doctors I got to learn about the human brain, learn a lot about arteriovenous malformations…etc
In fact, that’s what my life has been all about for the past year…
The MRI doesn’t show a DVA…
And the doctors don’t suggest that I do anything further…not even periodic follow-up of this supposed DVA
Regarding an angiogram, I didn’t have one because the doctors didn’t want to do it…
Many people have told me that I don’t believe what the doctors here are telling me that I actually want to have an AVM.
It seems unreal to me that they are telling me something like this…It seems unreal to me that people who have no idea are saying this…
I’m angry because everything is pathetic in this country
The other day I talked to a highly praised radiologist here in Bucharest and I told him that I wanted to do an angiography because I wanted to be sure that it wasn’t an AVM…
He asked me to send him the MRI report and he told me that he would not perform an angiogram because I didn’t have an AVM…He didn’t even ask for the MRI images…
I sent him a few though…
He didn’t answer me anymore….
So yeah
I m mad
I m 22 ( not that all people with all ages count cause no one should ever go thru this neither at 1 year old neither at 90 ) And I will probably be a victim of this idiotic system because I don’t have the money to go to another country
( Please keep in mind that I use google translate and I don’t think the translation is perfect )
This is a good point. The MRI shows a venous angioma, based on the text you gave me. This is an analogous term for DVA.
There’s a very interesting article here about DVAs, which may be worth a read. It is written in very simple English.
I seem to remember your symptoms as
Tinnitus, sometimes pulsating;
Eye focusing difficulty in your right eye;
I think eye pain;
Is there anything else?
because you didn’t answer me in the other conversation. Tinnitus definitely has other causes: we can’t blame an AVM for all presentations of tinnitus and I don’t think we can even blame an AVM for all presentations of pulsatile tinnitus.
And depending on how your focus problem presents itself, it could be a number of things. I had something called scintillating scotomas which appeared in my vision for a while. They’re very worrisome but I don’t believe something to worry about in themselves.
Your DVA is described as jellyfish-like in the translation that you gave us: that is pretty accurately descriptive of what a DVA looks like, so I’m as convinced by the word jellyfish as by any other word that you’ve got a DVA. Read the article I linked: you don’t operate on a DVA because there’s no alternate draining route for the part of your brain if it is removed. You’re much better off with it than without it.
Thank you Richard, I will read the article you sent me immediately.
My symptoms have worsened recently, they are the following:
Pulsatilistic tinnitus, headaches, dizziness, numbness in the hands, feet and face, pressure in the head and stabbing pains in the place where the malformation is supposed to be, dizziness and neck pain on the right side
As a small parenthesis, at the age of 12 (2015) I came home from school and slept at lunch… I woke up with a very strong headache that left me without vision… it passed after about an hour or 2, I then had an MRI which I was told came out perfectly normal…
Later in 2018 when I was just starting high school, I woke up with a stiff neck on the right side that lasted more than a week…
At that time I was hospitalized in the neurology department for a week, but they didn’t
do any imaging…
They kept me there for nothing and sent me home with the diagnosis of emotional pain🤦🏼♀️
I was in the best period of my life then…so what emotional problem I don’t know…
I know there are no doctors here, but honestly
From everything I’ve read and seen both here and on Facebook groups…many here know more than many doctors…because honestly…unfortunately there aren’t many doctors who know the symptoms of something like this…
I don’t want a diagnosis from you, but from what I’ve seen…and read…I can’t really let my guard down…
We only have one life…we all want to live as long as possible and do everything we wanted to…
Something that doesn’t let me give up is the fact that I had a case in my family where a cousin died suddenly without any known health problems…from a crime…
I know, this can happen to anyone, unfortunately we can’t control when we die and we don’t
But I’ve always been the kind of person who was cautious…when driving, when walking near blocks of flats, so that something doesn’t fall on my head…
The fact that I don’t feel well and there’s no explanation is unreal to me…and I don’t want to risk it…
Great Article!
Thank you!
I also remember , that when i sended a less performant mri to barrow about my problem their response was:
,This team reviewed your case. Your MRI demonstrates abnormal vessels in the right cerebellum. At
this time, we are not sure what type of vascular lesion this represents. We recommend a diagnostic
cerebral angiogram to further characterize the lesion to clarify whether it represents a fistula,
arteriovenous malformation, or developmental venous anomaly. This is a procedure where a
catheter is introduced to an artery in your wrist or groin, contrast dye is administered, and highquality images of the vessels are obtained using fluoroscopy. Once we have the results of the
angiogram, we are happy to evaluate the images and provide a second opinion. Thank you for your
trust and confidence in us, and please do not hesitate to be in touch’’’
And something funny, just 10 minutes ago I received another reply from Mr. Rene Chapot saying this: , I could download and look at your examinations in detail. These examinations are of very good quality and show a DVA or developmental venous anomaly at the right cerebellum which is a persistent embryonic vein without any pathological consequences and specifically no bleeding risk. A DVA is not a pathological condition and therefore does not require treatment.
Besides, you have no arteriovenous malformation so that I cannot offer a treatment for you.
I would also no to do a control as DVAs have no potential for further development.‘’ should you have further.’’
But every other doctor told me it s a dva withouth asking for the angiogram.
And now what?….2 top doctors….2 different opinions…
What if i m letting it down , live with the symptoms and when i will be finally happy etc…Die because it wasn t a DVA?
So I’d send the more modern MRI results to Barrow because I’m sure you’ll get more consistent replies from them compared with Prof Chapot using the better imagery. If they refuse to look at an improved MRI, preferring the next stage really to be an angiogram, then there are other perfectly magnificent major neurosurgery practices in the US that also offer a remote second opinion programme.
I rather expect them to give you the same response that you’ve received so far.
When you’re writing to Prof Chapot and to Barrow, do you report to them your symptoms? Because I think that draws a bigger picture than just the hospital scan reports.
I completely understand the desire to get to the bottom of it all and I also understand that your symptoms are worrisome.
Are your symptoms constant? Do they last for hours or do they occur and resolve in a relatively short period of time before occurring again later or another day?
It may be possible that your symptoms are derived from the DVA or the demyelination but there’s no surgical route for a DVA. I did think the article was helpfully written.
I discovered mine because it was pumping blood through a major sinus that flows past your ears, so I could hear it. I could hear the pulsatile tinnitus and it got louder and louder over time.
In Sep/Oct 2015 it was just something I could hear when I had my head on the pillow at night. By Mar 2017, it was like having the washing machine in my head busily pumping water out all day long.
My initial diagnosis was via a stethoscope and the doctor plotted over my head with the stethoscope until he landed over the fistula. When he heard it, he just stopped plotting, so I knew he had found something.
Likewise, my fistula was pumping so much blood straight into the right transverse sinus that as it developed more, it was pumping blood the wrong way along a number of tributary veins, to the extent that there was a patch on the back of my head where you could “palpate” a pulse: if I laid my fingers across the patch, it would lift my fingers.
In July 2016, as I was waiting for my first referral to hospital, I managed to record the pulsatile tinnitus by pressing the microphone of my phone over the patch and over my right transverse sinus.
This is the sound recording. The scratching sound is me getting it into position with my hair in the way but by the end of the recording you can approximately hear what it sounded like on the inside (minus the scratching noise). You may need to download the recording to play it.
I was seen in August 2016 by an ENT consultant, he used his stethoscope to identify an AVM and then ordered an MRI. I had to wait 2 months for the MRI and then a further month to see a consultant interventional radiologist in the neurosurgery practice at a different hospital. He showed me a small white dot on the MRI which was a fast flow on one of the scan sequences. It was sufficient for him to see that white dot to identify it as a dural arteriovenous fistula in my right occiput.
He completed a angiogram immediately prior to a catheter embolization procedure in April 2017. Having subsequently seen an angiogram, it is quite different from an MRI.
While the MRI takes thousands of slices through your brain and the doctor can animate through multiple slices to follow a shape to see how it appears, the angiogram compresses all of the layers into a single image on X-ray. With an angiogram, a contrast material is injected, through a catheter, at a specific location in your artery and images of the flow of that contrast are taken as it illuminates the artery and where it flows to. If you were to have an AVM, it would fill the shape of that as it then diverts into whatever draining veins the AVM has. All of this imagery is captured on a single x-ray picture, showing the shape of the vessels that have contrast in them. Then the doctor will inject a small amount of contrast material at a different location and see how it flows, which vessels are illuminated that time, and capture the flow on x-ray. The angiogram compresses all of the layers into one but the only things visible are where the contrast material has flowed to, so it serves to illuminate the shape of the vascular anomaly rather than having to scan through lots of different slices through your head.
If you and I were to look at an MRI slice image, it’s not very clear: it’s a little like trying to work out the shape of a baby on a pregnant woman’s ultrasound scan. Different scan modes are used to illuminate different things via an MRI but it is still possible to get the appearance of no blood flow on a scan, possibly due to the blood flowing in exactly the same direction as the magnetism at perhaps the same speed, or something like that. In the UK (if memory serves me right) that is reported as “flow void”, in other words “I expect to see flow at point X but none was seen.”
There are limitations to all types of scan. Sometimes it is important to have different scans and sometimes the scan selected is due to the doctor’s preference for how they like to be able to analyse things.
I’d say pretty much every single brain AVM patient here has had multiple catheter angiogram procedures: at least one to provide that finite analysis and a further one to check post op that everything looks fixed. Sometimes people don’t have surgery but have regular scans (MRI in preference to an angiogram, admittedly) and sometimes people have multiple stages to their treatment, so have multiple scans, quite likely multiple angiograms. For one or two of us, it’s a wonder we don’t glow in the dark!
Hope some of this helps.
There are risks to angiograms. I think I may have told you what those are but if not, do ask about that and I can share my understanding.
I don’t believe my interventional radiologist would have worked only from the MRI. He needed the angiogram too show him the form of the fistula. Indeed his whole practice is in the x-ray theatre, fixing different aspects of people’s vasculature by using a catheter to deliver contrast material or glue or stents or other means of treating a patient. His specialism is doing interventional stuff in the x-ray theatre. He injected glue into exactly the right part of my artery to close off the connection to my transverse sinus without closing off the artery itself or the sinus. Perfect!
