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AVM Survivors Network

New member from Nevada, USA...dAVF


#1

I had endovascular surgery to close a left-side dAVF with cortical venous reflux. The surgery was Aug 21, 2018 at UCSF in California, USA. Originally it was viewed as a low-risk procedure, and they would have used a transvenous approach. Ended up as a high risk surgery with arterial approach. Closed with 7 platinum coils and a bit of Onyx.

I’m now concerned about some after effects. Today, while cooking dinner, I moved quickly and got a bizarre unsteadiness, sort of a balance problem. I’ve had this happen 2x before, but this time it’s taking longer to resolve. No other significant symptoms. It is hard for me to walk heel to toe, but I compensate well. If I stand and close my eyes, I’m fine, no spinning. I just feel as if I’m listing to the left as I walk.

Location of dAVF is not completely clear. First indication from MRI suggested marginal sinus; now they think was also sigmoid sinus.

I’m curious if other folks have had similar balance problems that come on in a split second. No obvious cerebellar issues.

Thanks.


#2

H

Welcome to the group!

I’d say definitely, there is a risk of dizziness and balance issues, especially near sigmoid sinus. Whether that is to do with it being a DAVF or to do with embolization or what i dont know. But there are definitely at least a handful of DAVFers here with weird feelings in the head and balance or dizziness after-effects.

Are they dangerous? Does it indicate something wrong / still to sort out? I dont know. I’d definitely say to tell your doctor about them. In my case, my DAVF is somewhere near my right transverse sinus and was glued up on the arterial (possibly also venous side) in April '17. I lost the pulsatile tinnitus that I could hear pre-op but I now have a proper pulse that I can hear, some degree of dizziness feeling and odd dizziness sensation in the top of my head, maybe some fullness of the ear and last week I had a brief shot of vertigo.

I’ve gone back to hospital or my doc to get these things checked out and for the most part I am still waiting for the results from some MRIs. However, I would characterise my neurosurgeon’s view as highly unlikely / “vanishingly rare” to have any complication from the surgery. However, I dont really believe him. I think, based on the feedback from others here, that some hearing impact / dizziness / balance issue is almost common from a DAVF embolization.

So definitely mention it to your doc.

Keep us informed of how you get on. I think we could all benefit from feedback from the doctors in this area.

If you ever get sudden or severe symptoms, go to the ER.

Very best wishes,

Richard


#3

Thanks, hard disk just crashed so I’ll be terse. Better this morning but.


#4

To add, while I’m keyboardless, I don’t think MDs have the same standards of “cured.” I climb mountains, and loss of balance is important. I was biased toward UCSF when I saw a picture of a person in front of Ana Dablam, with a caption thanking the UCSF team. As I read the problems people here have had with delays, I’m humbled that I should complain at all. http://hwstock.org/PT_my_story.pdf


#5

You’ve had as difficult, if not more, of a diagnosis journey as me! And you paid for it. At least mine was all free!

There’s a lot to read in your PDF so ill have more of a read and might pick up more things to ask you about. For example, I want to look up where the marginal sinus is.

I’m sure we have much to learn from each other in the DAVF community.

Very best wishes,

Richard


#6

My insurance has overwhelmingly paid for it. That’s a big trade-off. My choice of job was dictated in large part by the medical plan, starting 36 years ago. I’ve had a lot of stat radiology within a day, just a small co-pay, MRIs typically take 1-2 weeks for approval; the main limits are screw-ups by the people transcribing information and the availability of machines. I go on Medicare next year, so there is motivation to get this stuff done now. Insurance is very inefficient here, but covers a lot (if you have a good plan or are poor), and is an incentive for needless surgery.


#7

Marginal sinus:http://www.neuroangio.org/wp-content/uploads/Venous/V_cavernous_sinus_diagram.png


#8

Not an easy diagram to follow.

Look at Figure 1 in here:

It seems to show that the marginal sinus is approximate to the jugular bulb. The jugular bulb is the point at which the sigmoid sinus joins the internal jugular vein. Equally, I think a jugular bulb is a developed thing and is implicated in tinnitus, pulsatile tinnitus and Meniere’s type symptoms, being right by the tympanic membrane so all of this looks pretty closely related.

Don’t take any of this as meaning I know what I’m talking about. It’s just that someone else mentioned the jugular bulb the other day and I read a bit about it.

The marginal sinus looks rather more internal than mine. I know my initial MRI showed my DAVF injecting high flow into my right transverse sinus and that there was some diminution of my right TVS somewhere, so I was getting reflux flow into (I think) my emissary veins and so I had a decent size pulse on the outside of my skull, again, right occipital area. Goodness knows what was going on on the inside!

I’m still getting some symptoms so I’m taking a bit of an interest in these areas in case it leads me to a “how about we look at…?” to the doctor.

Thanks for sharing.

Richard


#9

The marginal sinus is essentially at the foramen magnum, and is connected to the sigmoid sinuses by transverse veins. That’s a very crowded region of the brain, where lots of stuff (including cerebellar and medullary arteries) enter the skull. It’s slightly inferior to the sigmoid sinuses. It eventually dumps into the internal jugulars right above the jugular bulb. The dumping of a higher speed arterial flow, into slow-moving venous sinuses, creates turbulence which is supposedly heard as PT (my PT seems to be gone now). The oddities for me include the fact that even with the dAVF, I had very low total flow in my left side jugular, due to congenital sinus atresia.


#10

Atresia is possibly the same / similar to my diminution. The doc said he opened up my diminution (didn’t ask him how, or how permanently). The pulsatile tinnitus sounds like a whoosh in time with your normal pulse. Closing the fistula should stop that but I think that what then happens is you then suddenly get increased pressure in your arteries in the area, because the pressure isn’t sneaking out through the fistula and back to the heart. So you end up with different pressures all over the place – higher in the arteries and lower in the veins / sinuses and it takes time to get used to that re-balance.

I also think I can hear a “good” pulse probably from an artery that is passing by my ear. So I don’t think I’ve ever been overly conscious of my temporal artery in the past. Maybe everyone can hear it if you’ve got your head at the right angle against the pillow at night but mine now seems to thump away like crazy. I’ve got a really palpable pulse just in front of my ear tragus. Again, probably completely normal to be able to feel that but it all seems so loud post op. I also feel like I can feel pulses across the top of my neck / bottom of my cranium (but I can’t feel anything with my fingers, only the pulse that is in my fingers). So I can’t tell if I’m just fussing or there is something unusual / worrisome going on or what.

Hence, currently still waiting for some scan results but I do rather expect them to come back “all ok” and the docs telling me that I’m getting over-sensitive.

As you say, connected to the transverse sinus or sigmoid sinus or jugular bulb is quite a crowded (and important) bit of brain and vasculature. So obviously, there is the possibility that some things are bordering cerebellum-related which would equally affect balance, etc.

Who knows? For me, it’s good to swap notes and I hope by some DAVFers sticking together we might learn something that could help.

Very best wishes

Richard


#11

@Hwstock Hello and Welcome- I am so sorry. I too have a DAVF and am from the SF. I choose to have my treatment at Stanford, with Dr. Michael Marks.
My location is left transverse sigmod vein after my vein collapsed due to 5 blood clots forming in my brain and having a massive stroke.
Mine was more complex than they thought but I just had glue and Onyx-

Dr Michael Lawton used to be at UCSF and left to head BARROW at Arizona and they will do consults if you send them your scans for a small fee I think under $200.

I do still have some balance issues. I try not to move my head quickly. I have just one feeder that they cant reach as of 2015 when they went in the last time and luckily my body had sealed some of the feeders off by itself its rare but has happened to another person on here.

Angela


#12

Thanks Angela. Vertigo is better today; I was able to walk heel-toe. I’m just 13 days out of surgery.

I’ve had a lot of experience examining statistics, since my freak cerebellar stroke 16 years ago. MDs often quote the stats for hemorrhages from an unclosed dAVF, but I haven’t been able to track those calculations down. 16 years ago, I often found that frightening stroke statistics were based on unhealthy populations, and resulted in reverse causation. So I choose to be optimistic, at least for today.

I overcame terrible balance loss from my stroke, but the whole process took 2 years. Within 7 months I was back to climbing. I hope this better, as I know have fewer years on the clock.


#13

You said “I try not to move my head quickly;” feel unbalanced just after you move your head? That has happened to me about 5 days after surgery, and I was ok in about 10 seconds. But yesterday, the dizziness went on for about 10 hours.


#14

HW - That’s my balance issues too - though they can happen with a quick movement, with a loud noise (truck goes by on our street), with overwhelming visual stimuli (you won’t find me in the grocery store without a cart). My AVM is mainly on my left and it’s my right leg that has the issues. I describe it as “cruise ship wobblies.” You ever been on one of those really big ships - and it’s in 6 ft waves and the world just feels like it is gently rolling? Yeah, that’s me, most of the time. Sometimes I will list to the left when walking (because my left leg is stronger) other times, I’ll list to the right because my right leg just aint doing what it is supposed to. I talked to my doctor the other day about what to do if I ever got pulled over. I would not be able to pass the heel to toe sobriety test. He said, tell them calmly, then ask to blow a breathalyzer and if they are still giving you a hard time, have them call me. Gulp.

I am having other cerebellar issues - hearing in one ear is significantly reduced, heck, I’m not going to go into it all but if this is all you’ve got, you’ve got me beat.

Oh and if they did 7 coils - unfortunately I’ve got you beat in a bad way - they did 30 for me. I don’t think I really want to know how much onyx or whatever they put in my head…

Thanks for stopping by, hope this helps, keep in touch.

Tom


#15

Gosh, I feel like a cry-baby! My balance is better today. I had a cerebellar-saturated stroke in 2002 (neck trauma), and had to learn how to walk. Gaze stabilization / vestibular exercises were really helpful. Dizziness was my first symtom for the stroke, and UCSF told me to watch for stroke symptoms after the embolization, so I was a bit spooked. I guess my brain is rerouting blood flow, so I should expect a lot of strange effects.


#16

Dizziness seems really common for stuff in this area. And we don’t play Top Trumps here. Everyone has their own problems and their own worries. It doesn’t matter where they appear to be on a scale. Anything we see as stroke indicators bothers each of us. So always expect support from each other, not judgement.


#17

stands and applauds what Dick says


#18

HW - if I got $5 for every time that my neuro doc told that my brain was going to have to “adjust” because it was rerouting a LOT of blood flow, well, I’d have a lot of $5 bills…

Seriously, I don’t think any of us can truly realize what that means and what is going on in our very own heads - and we live with this stuff all day every day…

Keep on keepin on and keep on talking to us. It helps.


#19

I’m impressed that your neuros talk to you post-op!


#20

About 1 hour after this post, I was called by a member of the NIR team, and he talked to me at length. Yes, he did mention that it would take time to reroute the blood flow! :wink: And he also tried to say, as gently as he could, that mine was an unusual procedure and I might feel “off” for a while. (Experimental.) Since I had the guy on the phone, I asked a lot of questions, which he came really close to answering