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AVM Survivors Network

DAVF change in symptoms

Hello everyone

I have been on and off this forum for a while…
Diagnosed with a DVAF of Sigmoid Sinus area 2.5 years ago, waiting for an allergy test to contrast (had to cancel last one due to illness) and had to wait another year! Its coming up next week! Then I candy angiogram (petrified)…

In this time my pulsatile tinnitus has gone from severe (so loud not able to sleep) to zero… I have been free of pulsatile tinnitus for about year…

Anyone have this happen before? Why would this happen?
Also, I have very blurred vision one eye (on side of dvaf)… I have been told I have a slight astigmatism, but wondered if it could be connected?

I have had an eye test, apparently everything is fine (apart from astigmatism), and apparently my optic nerve looks ok… would an optician be able to tell anything from an eye test?

Appreciate any help at all…

I have tried to forgot about my DVAF, at one time I was paralysed with fear, but although mostly I live day to day, occasionally it bites me on the butt, and those fears come rushing back…

I cannot find any reference to the PT disappearing, and what this could mean??
Many thanks

Hi again… more info in this post! Well done!

Blurriness in vision can be from DAVF. Occipital lobe is where vision is processed and I’ve read someone recently saying that blurriness was a clue to their AVM that they’ve overlooked.

Don’t worry about the angio. It is OK, really. I can talk a bit more tomorrow, perhaps: late now.

Make sure you go through with the allergy test. Once you’re clear of that, the docs can start to see what you’ve got, etc.

I’m a complete wuss when it comes to operations, needles and stuff but I got through it fine. I would even do the whole thing all over again if I needed to. Honest.

I don’t think an optician would see anything DAVF related, unless your AVM was not just in your dura mater. I had my eyes checked out for other reasons and the eye doc knew about my AVM but he didn’t link the small aberrations he could see optically to my AVM at all. I’d say the astigmatism isn’t related, either but I’m not a doctor.

Stick to the allergy test. Get that done, then we’ll help you through what comes next. Nothing to worry about. I’ve been through some of this, and so have lots of people here. We’re with you all the way.

Lots of love,

Richard

Thank you!

I went to see Neurologist Consultant today… because of these changes…
He agrees that an optician would not see any changes due to dvaf.

I will go ahead with allergy test, though as I was recently diagnosed with Graves disease (hyperthyroidism), I am not supposed to have iodine, and I believe the contrast contains iodine… Many people with Graves become ill if they have a contrast with iodine… Ugh! The plot thickens!!

When you mentioned blurriness, you also mention occipital lobe… If my fistula is in Sigmoid Sinus area, would /could that involve the occipital area, or nerves serving my eyes I wonder?

So the constant was nice, he suggested an MRI (without contrast) so that we could compare to the 1st one I had… He said there was a chance it was gone (since my pulsatile tinnitus was gone), but that if it wasn’t I would need the angiogram to establish whats going on…

I’m taking it one step at a time… otherwise, I feel the ‘freaking out’ coming on…

Thank you so much for you reply Richard, sincerely…
I have had many health shocks and worries in last 4 years, not sure how much more I can cope with… (Graves was bought on by stress)…

I’m probably being silly, but right now, I am hoping and praying that the fistula has spontaneously regressed!

The consultant said that if I had cortical reflux, I had a 10% chance of a bleed… I thought it was much higher than that?? Or at least Dr Google has certainly made things seem worse?

Thanks again, so very much

Kimmy xx

Kimmy,

Hi. Lots to talk about today, so I’ve done a bit of reading on the subjects you talk about so I can give you decent answers…

You’re right about issues with contrast iodine and Graves or Graves-like or hyperthyroidism. I’ve read an article this evening online which suggests that some “prophylaxis” or preventative steps can be taken to avoid any issues. As you might expect the measure I’ve read about isn’t 100% effective, so it looks like there are some risks associated with it. The most important thing is that your doc knows about it and can take appropriate steps. From what I’ve read, it would be worth wearing a medical bracelet re your Graves, as if you need a scan for some reason (car accident, etc) and they don’t know about the Graves, it could give you a rough ride. Knowing about it seems key.

Sigmoid Sinus… this is the vein that joins your transverse sinus to your internal jugular vein. The transverse sinus is basically horizontal across the back of your head and your jugular is in your neck, so the sigmoid sinus follows an S shape behind your ear. Hence the pulsatile tinnitus. It’s one of the Dural veins and it is in the Occipital region of your brain… but in the dural layer over the surface of your brain. So… effectively “over” the surface of the sight-processing part of your brain. The relatively common effect I’ve read on this forum re occipital lobe AVMs is peripheral sight affectation / loss. I don’t remember whether that was AVMs actually in the occipital lobe or like yours on the surface.

I like the consultant’s optimism: that sounds good! It would be great if it has gone away. As I think I said before, if you had a clot, it could have been exacerbating everything so if you’re keeping well hydrated and it has dissolved, that might take some pressure off and allow what was seen before to reduce or possibly close. I’ve read about anastomoses which are openings between vessels in the body that in some cases open or close depending on the blood pressure… so I’m prepared to believe it is possible. But remember, I’m not a doctor: everything I’m saying here is just me reading other people’s posts or Googling stuff. Very amateur comprehension of a complex medical area.

The cortical reflux thing I think is like the type 2b in the linked article I shared with someone recently… I’ll look that up and link it below. I was told I had some reflux going on, though mine was probably driven by a narrowing (not a clot, as it turned out) in my left transverse sinus. In terms of risk, a cortical reflux is getting mid-to-upper end of risk of bleed. It is mid really but a step up from type 2a in the wrong direction. Still very treatable, I believe but would indicate that they would be likely to recommend treatment now before it becomes type 3 (I’m talking Cognard classes of AVM). As I say elsewhere, I think mine was type 2a borderline 2b by the time I was treated. So… I think the risk he is talking about is the number of patients who have that type of AVM who have a bleed within 1 year… one in 10 patients or 10 in 100 patients will have a bleed in the year. 10% as that kind of statistic is quite high. Again, an indication of “we ought to consider doing something about it”. But… it’s your life, your risk so you need to understand about your specific AVM (not these generalities) and what is right for you.

Hope this helps. Happy to share and help you understand and ideally get comfortable about what this is all about.

Very best wishes

Richard

Kimmy

Here is the post I was thinking about… sorry I was mixing you up with Catherine! See my post below:

By the way, the veins being shown in the picture being compromised are (from top to bottom) Sagittal Sinus over the top of the skull, transverse sinus being the horizontal line and the Sigmoid Sinus being the S shape near the ear.

Hope it makes sense…otherwise just ask,

Richard

Wow, what a comprehensive reply, thank you so much for taking the time… sincerely…

With regards to Graves I am going to call my Endocrinologist and ask, then armed with the info I will call the allergy centre and see what they say… With that, I will attempt to contact my neurologist/radiologist to see his opinion! As I am sure none of them will directly speak to each other here in NHS!!

So, since my DVAF is in the occipital area, I guess its more likely that it IS affecting my sight? My worry is that I have seen deterioration in my left eye (side of fistula) in the last 2 years, as my pulsatile tinnitus has worn off. So this is freaking me out, thinking that its the fistula which has now changed and causing these problems… :frowning: so I am having a bit of horrible few days, feeling very sorry for myself. This is the eye that has a ‘slight’ astigmatism… so its horrible not knowing whether a slight astigmatism could cause such blurriness. Or whether, really I am deluding myself.

So the consultant said about the 10 percent, as you say is rather a high percentage… In terms of me having a clot I actually tend to over bleed, so I think this malformation maybe due to childbirth?? Thats the only super traumatic physical event I can think of, given that I was drug free for the occasion! Still, I am wondering if the consultant is just humouring me with an MRI, as he told me to continue with my allergy testing and he would see me after my allergy tests! Which indicates to me, that expects me to need the angiogram… Obviously this has been me digesting it all in last couple of days! But I think, he was just being kind!

In terms of cortical reflux, thank you, I will study and reread what you have said, the diagram link is REALLY helpful…
I guess I am desperately hoping that the fistula has buggered off, but realistically I guess its more likely to have changed?

I did read a couple of studies yesterday showing that 2 patients each with 2 DAVF’s had treatment on one, and the 2nd fistula in each patient, spontaneously regressed…

May I ask if you know of anyone here on this forum that has had a spontaneous regression?

I didn’t sleep well last night, this is so stressful… though its amazing that the last 2 years I have managed to forget about it and pretend it was happening to me!

Richard, seriously, I can’t thank you enough… as for amateur comprehension, I really don’t think so… you have informed me more than my own neurologist!! And in a much kinder way.

One last question… How are you now…??

Thanks again :slightly_smiling_face:

Kimmy

Yes, I think the DAVF may be affecting your sight. I’m not sure whether the effect should cross over, though, so DAVF in left ought to affect right? I believe an astigmatism is to do with the imperfection of the shape of your eyeball, nothing to do with any of this at all, unless your blood pressure is really up. I would look positively upon it, though… insofar as if you get the AVM fixed, your sight may improve or stop getting worse.

I think I’ve seen one person say they had their AVM vanish in the last year, maybe two but I couldn’t tell you who.

I think the consultant wants to know the outcome from the allergy test because it gives him more options. I think he’ll NEED to do an angio if he needs to treat you (and I think he thinks he needs to treat you) so he needs to know what his options are. Do beware of my apparent understanding. I may say it with certainty but in reality it is just me googling stuff as much as you can. It is dangerous to think that an hour or so of reading stuff on the internet is reliable. Indicative, informative perhaps but the doctors know which things to worry about and which things are a bit of a sideshow, so don’t treat what I’m sharing as too good a set of information.

I’m doing pretty well. I was reflecting a couple of weeks ago that I was feeling pretty good. Definitely better than April (no question) or May. Actually, when I reflected I felt better than August, too, but it is very slow. As of this week, less brilliant. My head feels odd. Not dizzy but definitely the feeling of different blood pressures in different places. It has been like this but the general trend is to get better month by month rather than day by day.

Keep calm. There’s nothing to benefit from worrying about it. I’m sure there are ways of sorting you out. You just need to go through the steps with the hospitals & doctors to find out what is recommended for you.

We’re all here for you as well.

Best wishes,

Richard

I’m glad you seem to be doing so well, and yes, I can imagine there are ups and down to it all, but what matters is the general trend…

Thanks again for such a quick response… interesting what you said about DAVF on left could cross to right… makes sense, I hadn’t even thought of that… I have tried to look into this but can’t seem to find any data!
And who knows, my blurry eye might just be down to an astigmatism and not related?? Fingers crossed!

So it seems that spontaneous regression DOES occasionally happen, albeit infrequently?

And yes, I think consultant thinks he’s going to need to treat me, therefore continue with allergy tests etc… you’re bang on…

I have to use my time wisely, trying to inform myself on the angio, without scaring myself sh**less… I’m sure I can find some info on statistics here from people… and I understand of course your point on reliability of information… nothing is set in stone, but its good to try and understand as much and prepare as much as possible.

I think I might ask for a GA for my angio!! Although I bet someone’s going to say I have to stay awake?!! Lol!

Again, thank you so much for your time… hoping the oddness goes from your head soon…

Hugs
Kimmy

Hey, Kimmy,

How are you doing? Haven’t heard from you in a while and you came to mind when I was chatting with Carol B yesterday.

Did you get your allergy test done? Have you got any closer to an angiogram?

Hope you’re doing OK.

Richard