Did you find you had to avoid caffeine and such?
Definitely to start with. I do a bit of caffeine these days and occasional beer but pre op stayed firmly off and post op stayed off for quite some time.
Unusual tiredness?
I think the embo took it out of me more than I expected. It seems such a simple thing to have a bit of glue injected and a tiny hole in the groin but actually, it’s more impactful than we give it credit for.
This was my report a month post embolization:
I don’t talk about tiredness but I do know that I had my op in the April, this was how I was in May. Then in August, I drove to London to take my mum to the Proms and that really took it out of me. I really didn’t have the stamina that I had a year previous. I got through it but I pushed my way significantly through that trip to London. So, while I don’t say anything about tiredness in my log (see the linked text above) I do think it takes it out of you more than you expect.
The other thing I’ve definitely read is of others having extreme tiredness after either a craniotomy or an embolisation or gamma knife. There must be something in there that, if affected, brings on significant tiredness. I also think that you get through it. Not always and not often quickly but I do think you can get through it. I think the best advice is to go really steady with yourself. You’ve had an op that feels small but it isn’t. You need to be patient and careful and get better at the pace that works.
That’s what I think, anyway. I hope it is useful.
Go steady.
Very best wishes,
Richard
1 Like
Thanks. Sorry for all the questions. Did the pulsatile tinnitus go away yet?
Hey, it’s nice to try to help, so no problem at all. Have a re-read of some of my answers at the top of this thread.
In regard to the pulsatile tinnitus, I don’t have a pulse that I can hear under normal daytime activity; maybe in the real quiet. I do have a pulse that I can hear with my head on the pillow at night and I’ve got a bit of “fullness” feeling in my left ear. Whether any of these things are still indicative of danger, I don’t know. What I do know is that my doc is fed up with me asking questions, so I have decided to put it behind me and believe that I’m just fine. I do think it works and I also think we can obsess about tiny, tiny things in our heads that don’t warrant investigation. However, you need to make the judgement about whether you think whatever is going on in your head is ok or to be done something about as only you know whether it might be a trifle or a big thing going on. So don’t let me influence you too much.
The pulse that I can still hear on the pillow sounds to me like a normal double-thump of a pulse and I think it is a pulse that is just forward of my tragus – the little triangular piece of ear in front of your ear canal. One of the major arteries goes past that point (I think temporal artery, I’ll have to look it up) and my assumption is that either
a. I’ve got proper pressure going on in that artery, having plugged some holes, and that is leading in to me having a strong pulse there that I’ve not really noticed before. Or
b. I’m just being completely hypersensitive to a pulse there, because I’ve started to listen to the sounds inside my head, because we are all traumatised by this sort of experience and start listening.
I’ve had the doc do MRIs and an angiogram and he can’t see anything untoward, so I’m accepting that and assuming one of the above.
As for the increased pressure in my left ear; the fullness; I’ve not decided what to do about that yet. Again, if nothing is amiss on scan, I don’t know what to do and I feel I’m crying “wolf”. So I think I’m waiting for other symptoms before approaching the docs again.
In general, my head feels ok. I do have periods when it ticks the weird box but they are fewer and farther between than 2+ years ago, so I’m ok with putting it all behind me and not worrying about it until I get some other “sign” at the moment.
Hope some of this helps,
Richard
I’m glad you had another angiogram. Every time I was having symptoms, I indeed had a new fistula. I’ve had 4 in under 2 years. I do hear a blood flow on the left side of my head also, primarily at night, not so much when I’m standing or sitting. But, due to my first fistula, and a delay in diagnosis, the transverse/sigmoid sinus vein on that side became damaged and shut down. A few months after the embolization, it re-opened again, but it isn’t normal. It’s possible I can be hearing turbulent flow there. It’s only been a little over 2 weeks, so I’ll give it some time. I’m normally very active, and I would like to return to exercise soonish. This has already taken up so much of my life, that I haven’t been able to live normally for a long time. What’s curious about your situation, is compared to mine, my symptoms from the fistula were generally gone after about a month after embolization. I didn’t have any new or lingering symptoms until I had a new one.
It’s a really difficult thing to know whether stuff you can hear is to be bothered about or not.
For me, the difference pre and post op is that pre op, the noise was a whoosh, whoosh or a pfft, pfft - definitely like liquid squirting out of a tear in a pipe. Post op it is more like a normal pulse, hence I’m more comfortable with my explanation above.
That is similar for me, as well.
Well, if your current pulsatile tinnitus is more of a normal heartbeat, I’m more comfortable to encourage you to relax about it. The noise from my pre op PT was so different, so unusual-sounding, it did not wholly surprise me that it translated into being an AVM. However, when I tell “normal” people about being able to hear a pulse every second at night, quite a large proportion tell me that they, too, can hear a pulse at night – should they worry about it? You’d have to think it more likely that we are listening to the normal functions of a pulse near our eardrum, or creating a noise against the pillow because the temporal artery is flexing part of my ear and making the scratchy hairs on my ear run against the pillow (and that is what my current noise sounds like) than it is another insidious thing lurking in my brain.
Try relaxing about it and be patient that your recovery, post op, is going to be a thing of months not days or weeks.
Very best wishes always,
Richard