Avm 98 percent embolized and some vertigo

Hi I have a question . I had an embolization on May 11 for my avm. It was very successful 98 percent. I had a dizzy spell last week and then I felt fine . Now I’m having some vertigo symptoms. I did a vertigo exercise and it’s definitely my right ear I was so dizzy after that . I’m going to my dr on Thursday for blood work and to schedule a follow up angiogram. Has anyone had vertigo symptoms after embolization. It’s have had vertigo before so I’m hopefull that’s all it is .

Hey Chloe,
I have some awful, awful dizzy spells. I go to stand up get the dizzies and have to brace myself till it calms down. If I stand and move straight away I can find the floor with a thud. At one point I saw a chiropractor who showed me a treatment known as the Epley Manoeuvre. The theory being that the vertigo is caused due to the crystal in the ear being out of alignment, seemingly the manoeuvre assists in correcting the misalignment. Unfortunately for me it seems that the crystals are not the issue as, even years after surgery, the dizzies are still an issue.

Considering you’re only 2months since surgery, you’re still in the recovery process. When it comes to neurosurgery recovery can be a slowly, slowly process, everything has to adjust to your ‘new normal’ and that takes time. How much time? well, that can be really individual to each person and each surgery. I’ve had the ‘joy’ of undergoing a few neurosurgeries (6 so far) and none of them have been exactly the same neither in procedure nor recovery. One of the biggest battles I’ve had is patience with myself. I thought they’d operate, I’d recover and life would return to normal. That has not been the scenario for me and that has very much tested my patience.

Hope it helps
Merl from the Modsupport Team

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Hello and thank you . Wow that’s a long time to deal with this. Mine comes and goes yesterday all day I felt great then last night I was lightheaded. I’m very impatient with myself also.
I hope you feel better soon and things get better and again thx much you for ge support.

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Hi, I had my embolizations done 11 years ago when I also had a stroke half way during the procedure. After the procedure, I have recovered 99%. During the first few months after the procedure, I had swishing sound in my ears which slowly went away. My neurosurgeon had told me that over a few months, the noise should resolve itself, which it did. If your vertigo is related to the redistribution of the blood flow, things may resolve as the body gets used to the new flow pattern. Hope you feel well soon. - Manny

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Yep, and it’s horrible. I call it my ‘seesaw’, I’m symptomatic then I’m not, I’m up, then I’m down. Trying to plan things is near on impossible. I can’t say ‘at 3pm I’m going to be in pain’. I just know at some point in the day it’s going to hit, I just have to be prepared. Managing symptoms is a bit like trying to juggle bowling balls… …You just know you’re going to get hit by one of them at some point.

I’ve recently had a discussion with a dr regarding medications. He wants me to take painkillers 3 times a day (AM/PM/night) but if I use them as a regular med they don’t work when I need them, when I have stronger break through pain. Trying to manage it all for ourselves can be a big battle.

Merl from the Modsupport Team

Hello
I actually have zero pain . I always had headaches my whole life and literally have had maybe 3 since May . The dizziness has subsided and I feel like my old self again. I hope you feel better

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Well I’m going back in on August 6 for I hope just an angio to see if the last 2 percent is gone . If not one more embolization and I pray I’m done.
I tell everyone this is more mental than physical for me . I just want this to be over with and have considered not even going back but I know I have too.
I wish they could just tell from an mri scan .
Wish me luck and I’ll let everyone know how I did soon.

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Hey Chloe,
I agree, the mental side of things can be HUGE.
With my first neurosurgery, it was an emergency. The whole process sort of went on around me, I really had very little idea of what exactly was happening. The aftermath of surgery was shocking to say the least. I was then told I would need further surgery and because of the previous surgery I knew what was coming. I left the appointment, drove to the beach, walked out on the pier and threw up. A bit like you I considered not going back, but knowing I really had no choice. I can be a bit of a control freak, I like to be in control of me but here, I had to hand that control over to the medicos and I didn’t like that idea.

My advice, just take it one step at a time. Have the angio, then see what the Dr’s say. Try not to go down the line of further surgery until they tell you it’s needed. 2 months post surgery your body is still adjusting, those adjustments can be stressful enough without adding to them. I make that sound easy ‘Just don’t stress’ but I know damn well it’s not that simple. Just ‘try’ to stress less.

Merl from the Modsupport Team

Chloe

Good luck! You really do need the angiogram because you want the certainty that everything is closed off, so just cope with it and you’ll know for sure.

May is still not that long ago. As I think we talked about a few weeks ago, I had a big dizzy spell at 6 months post op and it took me several months to feel back together. I don’t think it was vertigo, though, so can’t comment on that. What I definitely agree with you is that a lot of this is in the mind! Oh yes!

Hoping you get a good outcome because that definitely helps with the mind, though if you’ve really reduced your number of headaches, that should be a real helper to believing you’re fixed.

Very best wishes,

Richard

Thank you both . Yes my headaches are really non existent. I went from almost 4 times a week having a headache to nothing. So I do hope that’s a good sign . Thank you for always being so positive this group has helped me more than you know . :blush:

It’s difficult when it’s happening to you and you’re not feeling well but I honestly believe that positivity is a good proportion of getting better.

I just want to mention that I did have an episode of true vertigo, the one caused by crystals in the inner ear, quite a while after my embolization and after I’d gotten over the fairly constant nausea and dizziness that were the result of it affecting that part of my brain. The Epley maneuver put everything back in place.

The vertigo episode I had was triggered when I tilted my head onto the back of the couch and turned my head to look at the cat. I’m wondering if my habit of avoiding moving my head in ways that make me dizzy or nauseous had made me more susceptible, just because those crystals and fluid were not getting moved around like they were before. It’s hard to believe I used to do yoga, because now I have trouble picking a kleenex off the floor or looking into the freezer - so I try to keep my head upright to avoid those unpleasant feelings.

I’ll confess too that my first reaction to the sudden dizziness was that I was having another stroke. The doctor was able to see pretty clearly that it was my ear and not my brain. They do a test where they move your head from position to position and look at your eye movements; it can pinpoint which canal the crystals are in and which maneuver will put them back in place. Pretty amazing.

Yes I did one of those maneuvers and knew it was vertigo. I laid on the floor and tilted my head and the room spun it was awful . But after that it started to subside. I feel better now a little here and there but nothing bad. Think some of it is my neck I do still work out not as hard but I keep moving as sometimes that affects my neck .

Are you on anti seizure medication?
There could be micro hemorrhage or

I am doing craniotomy I cannot live this life with this “tumor of veins” in my head a lot of side effects I also had status epilepticus so they put me to sleep for a night and then I left after they monitored me

Hello no I just had an angiogram and all is good . I just had vertigo and I have heard of a lot of people post embolization that are dizzy . And I am not on anti seizure meds . Good luck with your procedure. I will not have that done he said he cannot do that on my avm

A primary care doctor can easily diagnose if it caused by dislodged crystals, and where the problem is. There are different maneuvers to fix it depending on which semicircular canal is affected. My doctor told me which and to go home and look it what to do on youtube (I really wish he’d taken five minutes to do it in the office).

A while back, one of my friends told me that according to her doctor, her bout of vertigo was triggered by having to lie down flat for a couple of hours for a medical procedure, followed by head movements she wasn’t used to while getting up, and that bumped the crystals out of place. The Eply maneuver fixed it for her. She had blamed it on the anesthesia at first. I bring this up because lying flat and still for some time is necessary for cerebral angiograms, too.

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I know just how you feel 3pm is when my worst pain usually hits and stays throughout the night. I haven’t talked to any doctors about pain killers yet but can’t keep dealing with this extreme pain pain every day. I wish you the best

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Hello
I’m sorry to hear about your pain. My migraine is gone . I used motrin migraine works great . And now I feel ok . Still dizzy on and off. But I had this the last time too.

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