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AVM Survivors Network

DAVF embolization, what has everyone experienced during recovery?

I was curious how other’s recoveries were in the weeks and months following embolization for a DAVF. I’ve had 3 embolizations so far, and the last one has been the most difficult recovery. I don’t want to put a ton of details here right now, since the whole ordeal has been rather complicated, but I’d like to know how everyone is doing and how they felt and were able to function after.

Taco,

It took way longer to feel right than I expected.

Immediately post op, my head was smarting from the contrast material, the glue and the solvent. I had a decent headache. I could also hear a big pulse. I think that was because I suddenly had the proper pressures in vessels passing my ear. For example, I noticed a pulse in front of my Tragus for the first time ever, which I take to be from my external carotid / temporal artery.

I didn’t feel at all fixed.

I felt very different and quite weird. It took weeks to feel better. I had the op in April 2017. I was ok to go back to work in 3 weeks. I was allowed to drive from mid June, I think, but I spent half a day driving the 100 miles to London, saw a concert and then drive home in August and I felt weird, very tired and not the usual me at all.

From the Sep or Oct, I felt I started to be less well and indeed had a dizzy spell, so went back to the doc. Over the ensuing year, I felt at times as though I got better or didn’t, depending on the direction of the wind.

If you had anything like me, you’ve just had big volumes of flow redirected and it feels properly not right. To some extent I think it just takes a long time to get used to but to another extent it is something to pay attention to in case there is some residual work to do. I can’t say I feel 100% free of my DAVF. I’ve had weird head feelings the last couple of weeks but when we looked through 2018, there was nothing apparently visible on the scans.

So, I’m with you, definitely but I don’t know about your specific operation and how it might be affecting you. I’ll be interested to know how you get on, though, as it may still be relevant to me too.

Best wishes,

Richard

Thanks, I’ll have a little more time later where I can post my experiences in more detail. I’m due for my follow up angiogram in about 2.5 months, but we may do it a little sooner due to my symptoms. Part of the problem is, when it comes to DAVF, CT, and MRI, MRA, MRV sometimes don’t show anything. That has happened to me in the past where my imaging studies were fine, but then when I had a follow up angiogram, a new fistula was there, clear as day.

I had a follow up angiogram a year after the op and that was clear. What bothered me about the angiogram is it is quite focused: they are only ever going to squirt contrast into the vessels that seem relevant and see how they flow. If there was a little something else cropping up nearby, they might not see it, so I went for MRI or two as well.

I can’t say I felt my aftercare was well joined up, so I could still have something going on but the neuro I was seeing basically said I might have something really small but if it is so small he can’t even see it, he certainly can’t do anything about it. So, I’m carrying on.

I have to say that focusing on it magnifies it – like tinnitus, if you listen to it, it gets louder. Putting it behind me has helped a lot.

I think my position is that I need to have a more significant event before the doc will welcome me back. Otherwise, he thinks I’m just a crier of “wolf!”

When you have time, I’ll be interested. I can find my original story if you’ve not seen it before and you’d find it of value to read.

Best wishes,

Richard

We have talked in the past and I remember a bit. Lately I’ve been able to pick up more activity. I’ve been able to ride 10-15 miles on my bike at a good pace. So I suppose that’s a good sign. But I still feel unwell on a pretty regular basis. I was very active and athletic before all of this.

@tacos4life My first angiogram and embolism I actually thought there was a spider in my brain cause that is what my DAVF looked like a scary spider with 30 legs. My DAVF was way more complicated than they thought from the MRA and the drs were all excited discussing it. Meanwhile I was asking What is that?!!! Well they had warned me that if my bp went up they would do a main line IV and boy did that hurt. So I knew I could not move - when I am in a lot of pain I want to punch someone ( growing up with twin brothers ) So I said you better knock me out before I hit you - so they did - But I had another stroke when I woke in recovery and was in so much pain felt like my brain had been electrocuted .
I could not talk so I was signing and they got my husband who did not know I could sign and got paper/pen - Then they knew I was in terrible pain. The student dr never got my stroke dr - anyway it left me with perm pain in my occipital area. I am also allergic to Iodine in the contrast so I have to have steroids before and I just feel bad I think from the contrast. The second time I just had angio somehow my DAVF had sealed some itself on its own. But I was really sick from the contrast the second time I think it took me about 3 weeks to flush my system. I drank a lot of electrolytes .

I played badminton pretty early on and I felt awful. I do think we have to take it really steady.

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How are you doing now, at this point?

I’d say I’ve had a year of being just fine.

Work is busy at the moment and home is busy and then other things have cropped up in the last couple of weeks and it has perhaps been a bit too much. Over those last couple of weeks, my head has felt more weird than usual, to the extent that I started wearing the medical alert bracelet that I had made post surgery: i.e. that I’ve got an embolised DAVF right occipital: in case someone found me inspecting the carpet at close range.

I’ve not had anything other than weird head feeling. Maybe a bit of pressure feeling. At the moment, I’m putting it down to that extra stress and that my blood pressure was probably up. My rationalisation of it to myself is that maybe I don’t cope with high blood pressure post embolization like I used to and the embolization has closed off a number of things that mean when it feels high, it doesn’t drain away so easily, who knows? Anyway, it has had me a bit bothered. I’ve not had any other effects, so no significant dizziness nor seizure nor migraine aura nor the like.

So I’m currently taking it that I just need to take it a bit more carefully.

Best wishes,

Richard

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Taco and Dick

I have had a DAVF embolization in June 2018 and my recovery was uneventful. However, I got back the pulsating tinnitus in the same ear - sound got louder over time. MRI/MRA and MRV were unremarkable. The international radiologist from Johns Hopkins wasn’t concerned but I am wondering if there is something there which can only be seen via angiogram.

Your thoughts?

Thanks

Eitan

Eitan,

Hi. It’s good to ask the question. I’m not sure what my answer will turn out to be! (Merry Christmas, by the way: I hope you have an excellent holiday and my very best wishes for the year ahead).

I think my first thing is… you have to consult the doctor: don’t take my word for anything. However… what do I have experience of and what do I think?

I feel like I had pulsatile tinnitus before and after embolisation but it was different. As recounted above, I had subsequent MRIs and angiograms and nothing untoward was found, so I have contented myself with the idea that if there is anything going on, it is simply too small to see, ergo too small to be able to do anything with, ergo not to worry about. But I do worry a tiny bit.

How was mine different before and after? Before, it was definitely a whooshing sound, like “pssssh, pssssh, pssssh”. It sounded erroneous: it sounded like blood squirting through a tear. I thought to myself, even as I heard it for the first time in Sep or Oct 2015 that it sounded like a tear.

If I have a bit of PT these days, I greatly ignore it, so I can’t tell you just now what it sounds like because I’m in too noisy a room and I can’t hear it but I would say that the pulse I could hear post op was much more like a normal double thump pulse “bump-bump, bump-bump, bump-bump.”. I don’t think I hear that these days because I put it out of my mind, though I can’t swear that it isn’t there in the silence of the night. Clearly, it is a lot quieter than it was immediately post op and having ignored it for 18 months it doesn’t bother me.

So… does yours sound more like a whoosh than a thump? If whooshy, I’d say go and get an MRI or angiogram. I tend to think that an MRI is a broader scan than the angio (and angios should be minimised) so the first clue might be found that way.

The other thing in my experience (and I’ve seen written elsewhere) is that a mere stethoscope can be used to hear the “bruit” of the pulsatile tinnitus if it is clearly there. My ENT doctor diagnosed my AVM right at the beginning by plotting over my head with his stethoscope and I got my primary care doctor to do the same a couple of times; each time my pre op bruit was audible. Although, I’m sure it is also possible to have a PT that cannot be detected by a stethoscope from the outside. My AVM was dural so very much on the surface.

If you have more of a double-thump pulse going on, my own personal theory is that we get a bit over-sensitive to hearing a pulse and by concentrating a bit too much on these things, we pretty much listen out for stuff being wrong in our head. As such, I’m pretty sure that the pulse that I used to hear post op is probably a normal arterial pulse that is passing just in front of my ear.

So… see the doc or not? I do think that if you’ve got a whooshing pulse that is getting louder over time, it sounds like an AVM-related thing to me. I do think I’ve read of other causes of PT, such as a “bulb” of some sort (I’ll have to look the term up and tell you the full term) forming on the sigmoid sinus or thereabouts, which may be less of a worry than an AVM. I’ll look it up and get back to you.

Hope this helps. Let me know if whooshy or not!

Merry Christmas!

Richard

The bulb I was thinking about is the jugular bulb. The person who knows more about this than me (I think) is @Hwstock if we get to needing to explore that possibility. Reading back on Harlan’s story, I’m convinced that an (enlarged) jugular bulb can cause PT.

Very best wishes all for Christmas and the year ahead!

Richard

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I’m not sure of the context, but yes, turbulent flow before or at the jugular bulb can cause pt.

Hi Dick

Thanks for the detailed response.
The noise from my right ear is not a whoosh and quite different from the pre-embolization pulsating tinnitus. It got loader since June 2018 which concerns me. I will watch the symptoms and play it by ear for few more months before proceeding with angiogram.

Happy New Year

Eitan

This is very possible. But there are a number of reasons it can happen. I’m experiencing something similar right now and I’m having my follow up angiogram in about 2 weeks, so we’ll know then. Did you have a follow up angiogram?

Eitan,

If it were a whoosh, I’d be more sure it is an AVM but since it is different, I don’t know, so I can only suggest you see your doctor.

Wishing you the very best for the year ahead!

Richard

No. I haven’t had or recommended by the Johns Hopkins’ Interventional Radiologist to have another angiogram. Dr. Gailloud was very confident that the fistula is completely plugged.

I will inquire in late January with a Neurosurgeon who I plan on seeing for unrelated condition.

Wishing you all a Happy New Year

I’m headed back in about a week for my follow up angiogram, which is about 6 months after the procedure. It seems pretty common to have one as a follow up.

They found two very tiny fistula during my follow up angiogram, but the previously treated DAVF are unchanged, so that’s good. They embolized the new ones after the angiogram. I’m currently at about the 2 week mark of recovery. Initially there was some pain and pressure, but that subsided fairly quickly. This week I’m just feeling kind of weird. Some pressure has returned, fatigue, some dizziness. Minor headache, some uneasiness, etc.

Anyone else experience similar “weirdness”? It seems that every embolization is a bit different after.

Taco,

Absolutely I felt weird! See a couple of earlier posts in this thread.

I’d say it took me months to get past the weird head feeling. For me, I think I had to accept that I was well (and not to worry about the weirdness) and I just had to relax and put it out of my mind.

My personal theory is that your artery has been leaking blood into your vein for a long time. The doc has now finally glued up the hole and suddenly you’ve got the “right” pressure further along that leaky artery than you’ve had for ages and ages (if ever).

I think it is the same with having the pressures in your brain rearranged. We’ve got so used to low pressure here and higher pressure there that to suddenly swap them feels completely weird.

Best wishes,

Richard