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AVM Survivors Network

Vertigo question


#1

I had a craniotomy and removal of my avm on the cerebellum last March. There was a subsequent complication of hydrocephalus and they had to put in a drain for a week. I know I’m recovering well in the sense that I’m walking around pretty well, using all my limbs and starting to get back to my life. BUT the vertigo is still pretty bad and is really limiting me. I feel it with most of my head movements and I get “Light headed” so that my mind is foggy, I’m nauseous and my balance gets even worse.
Did anyone else have this? Did it go away? How long did it take? And was there anything that you did to help improve it
Thanks
Carol


#2

Carol,

I’ve got a DAVF which was operated on with an embolisation, so quite different from you but I would say that i came away from the op with a weird feeling in my head – not light headedness, but definitely strange sensation that feels like the very top of my head is not right, somehow. I feel a degree of dizziness but not enough to lose my balance. When walking or driving/being driven, the weirdness increases, so I see it as motion-related.

Recently, I’ve had some vertigo, so actual loss of balance, not just the feeling of dizziness. In my case, it has been pretty brief but has led on to an accentuation of the dizziness/weirdness.

I’m pursuing this very slowly with the doc, who is adamant there is nothing wrong, or at least he doesn’t expe t to be able to see anything untoward, so naturally would struggle to do anything to alleviate it if he can’t see it. I need to chase him, actually, to ser if he has my latest scans back.

What do I think? I think when we have these operations to fix an AVM, all of a sudden we have increased pressure in places that have been under pressured for some time and a reduction in pressure back to where it should be in other places. If the difference there is significant, or especially if the difference in pressure is playing upon those parts of the brain that deal with balance, etc., I’m not surprised that we get some side effects of the operation. What I’m trying to validate with my doc is that whatever effects I am having are to be expected, or whether they are still indicative of a “problem” or a risk that we still face.

It seems remarkably common to me to have dizziness sensations with a DAVF treatment.

Random ramble but I hope it helps :slight_smile:

Richard


#3

Carol
I had a dural AVM which was embolized with coils in Jan 2016 after it bled. I had about 1.5 years noise free and dizzy free before the dizziness came back with avengence. After many diagnoses of vertigo and vestibular neuronitis from many drs. I was finally referred back to my neurosurgeon who consulted with his team of neuroradiologists and determined that it was NOT vertigo nor any other non specific “light headedness” but was caused by the feeder veins from the original AVM which remained enlarged and engorged and were pumping so much blood through the cerebellum that the receiving veins couldn’t handle the flow (like shooting a garden hose thru a pinhole, I was told) and the blood was backing up at the base of my skull causing pressure and dizziness. They recommended a stent be placed in the receiving vein which I had done in July of this year. It worked like a charm. I am now dizzy free unless I tip my head back or bend over for too long. Such a relief from the constant head spinning before. This would never have gone away on its own and treating it as vertigo could only cause more damage. Maybe a second opinion from a “fresh set of eyes” would give you some answers.


#4

I am slowly getting better and it has been only six months, which when it comes to brain healing is a pretty short amount of time.
I just had a follow up angiogram and they say that everything is good. The entire avm is gone(mine was small, .8cm). It was on my cerebellum which is the part of the brain that deals with vestibular issues.
I’m just wondering; for those people who had a bleed or surgery on the cerebellum, how long did it take for the dizzy/ light headedness to go away?


#5

I’ve been there. Doctors can be frustrating. If it does not show up on a test, a doctor may not have anything to say. In my case, the doctors were surprised at my nausea and lack of balance, but given that it happened to my cerebellum, I’m not sure why they would be surprised. They had no doubt of it because I was throwing up in front of them, and the 50 lb weight loss over 2-3 months was also an indicator. Was it dizziness or vertigo to me, or just no balance and being sick? I’ve always described it to people as being sea sick constantly, or having a terrible flu that will not go away. That description does not capture the balance issue, however. I remember the blessed relief of lying down with my head on a pillow and just keeping my head still. I had to be on right side for some reason. A few years ago, I wrote some things on this website that are gone now. One of these was the problem of going to the grocery store. I had a walker at the time and remember how much a person needs to move the head in a grocery store. The constant head motion when looking around was a problem. There was a new computer to hook up, and the constant head motion to connect cables and see where things should get plugged in–I had to look up, look down, bend down and look, move my head and peer over edges–Oh, my. Anyway, it took about a year for that sort of thing to go away. There did not seem like there was any improvement for a few months, and then the improvement was slow but steady. Then, the improvement really took off when I started doing some exercise. There is a distinction between vertigo and dizziness. I looked it up just now, and in seeing the distinction and it seems dizziness is the term that applies. No balance, disequilibrium, light headed–that is a good description. Vertigo is a particular kind of dizziness where the surroundings seem to be in motion. Vertigo does not seem to be on the mark for me. I was light-headed, and had almost forgotten about that! I am now remembering having to get up slowly or else feeling faint. It’s odd how I had not thought about that aspect of my condition for so long. But that may have been the lack of eating and proper nutrition, and that is how I thought about being light headed. My blood pressure was very low at the time. The other stuff that was making me sick is something I would describe as lacking balance and an orientation which is dizziness. The sensation of having the mind foggy is very familiar. My mind felt slow and forgetful. The idea of spinning or having things spin around, in other words, vertigo, does not describe what I went through. We are all different. I responded to you on another occasion, and the things I described there still apply. Others have gone through this, and your descriptions are very familiar!


#6

Thanks for the reply. You hit the nail on the head. I feel exactly the same way. I would say that it’s more like my brain feels like it is spinning around inside my head(and not that the room is spinning). I just don’t know what to call it. I often get a fuzzy, hard to focus feeling.
It does seem to be slowly getting better and I am trying to do a little more and more to let m brain adapt.
The being on a boat is exactly how I described it at first, along with the sea sickness but I only lost fifteen pounds (of course it’s all back on now🙂).
Nice to know that it did go away for you. I’ll just stick with it and slowly increase the exercise.
Wish I could give up the grocery shopping, but I think we would starve then
Carol


#7

Hi, everyone!

I had a “huge” cerebellar AVM resected 25 years ago. People did not survive a bleed like that at the time. I did. But, I was alone in many respects, experiencing all kinds of symptoms that could not be clearly described to others. The vertigo/dizziness thing was ONE. In particular, I would go to bed, and would have to situate my head on my pillow just so. Too much extension of my neck would result in a very distressing feeling. While lying on my back, I would grab the matress on both sides, as I felt like my whole body was rotating. (I knew it wasn’t.). Also, my eyes could not focus. I closed them. I still will experience that feeling, but this rare these days. I know how to position my head. I advise my dentist of this also.

I must say that I am still limited in turning my head to look up, under objects, or deep into cabinets. I require assistance in changing an overhead light bulb, for instance!

Even at this late date, it is comforting to know that others understand, and that all of you have a place to share your experiences. Such a blessing.

Thank you all,
Lifeisgood :heart:️5


#8

Hi,

I had a 2.5 cm AVM removed from my cerebellum in March this year. I initially went into hospital with vertigo so bad that I could not sit or walk and would fall backwards as soon as I closed my eyes. After an MRI they found a tumour which was removed after a second craniotomy (first op was unsuccessful). The tumour turned out to be an AVM after testing.

I have found over the past 7 months that I have ups and downs with the dizziness but it is never fully gone. My Physio is sure that it will get better over time but has told me to expect recovery to take a minimum of 2 years and not to push too much as brain injuries are slow to heal.

The other thing that they keep reminding me is that brain recovery is not like the healing of any other injury in that it just keeps getting better. Both my neurologist and physio have told me that it is very much up and down with recovery of a brain injury and to do as much as I can on good days and take it easy on bad days but always keep doing a little bit.

I hope this helps encourage you a bit that you will have good and bad days, but the good days get more and the bad days get less the further you go along.

Kindest Regards.


#9

Really useful. Thank you.


#10

Thank you so much. That is very helpful. I have noticed the up and down nature of my recovery, it’s just tough some days to stay positive.
I’m not the type to sit still, or take breaks and that has been a challenge but I’m figuring it out.
Best of luck to you
Carol