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My daughter had decompression operation several years ago.  All was successful but recently she's experiencing noises/echoes almost voice like sounds in her head.  Also frightening her out of sleep most nights. like terrors,  Shes not sleeping at all and is extremely anxious.  I feel its depression and i'm worried.  I'm wondering if this has anything to do with Chiari malformaion?  Our GP just doesn't understand and I'm worried sick about her.  One worried mam.  Any help advice welcome. 

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  • Posted

    Hi annmarie, I've not heard anyone with chiari with this, you don't say how old your daughter is, but my grandson suffers with simular night terrors and sleepwalk, sometimes he's fighting whatever it is that wakes him and sometimes doesn't even remember. Gp told my daughter to make sure he empty his bladder before bed and not let him get overtired. Common thing apparently in young people. On the other hand, I remember after my surgery of having vivid nightmares but got less in weeks that followed. Hard to say, if gets worse I would ask to be referred back to consultant. Do you not have a number for a chiari nurse? They gave me one after operation if I ever needed advise. Hope you get her sorted. X

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    • Posted

      Hi, My daughter is 22yrs old now.  She never complains, moans and is rearely ill so for her to come to me with these concerns makes me feel helpless.  I've made another GP appointment.  Don't know what else to do.  thanks x

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    • Posted

      Yes annmarie I would definitely get some help, I thought she was younger. As you say it could be depression, but with having chiari you just don't know if it triggers something off. I'm having lots of tintintus, dizziness and nausea on and off, so they have just done mri scan to make sure all is OK. Keep pushing for help.

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  • Posted


    I can feel as a mum what you are going through my daughter has a severe headache pressure on the top of her head and both sides of her head and hammering she was given diamox as a trial medicine for ideo pathic intracranial hypertension and that relieved the pressure and the headache but the pain at the back of her head still the same as she has a lesion in the pineal gland cyst and low position cerebellar tonsils which was diagnosed as chiari 1 malformation she also suddenly lost her visual fields from her right eye and the doctors don't know what to do or even give advice

    Hope your daughter gets better and try to be optimistic and make her always smiling

    Best wishes

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  • Posted

    Hi, just wanted to add that I had decompression surgery three years ago and have had weird sensory issues ever since including a bunch of strange sounds.

    I struggle to identify which direction a sound is coming from which means a wake up with a jump a lot as I think a noise from outside is inside. I get lots of reverb sometimes and sudden peircing sound in both ears followed by a significant change to my hearing, as if I was under water.

    I get what I guess is a kind of twitch inside my ears which sounds like a loud pop, if i'm trying to fall asleep it makes me jump out my skin!

    All sound seems more intense and in lots of cases, much more unpleasant.

    This is just a quick overview but it's just the tip of the iceburg really, most chiari sufferers have such a long list of symptoms there are ones like these hearing disturbances that we probably never even discuss with our doctors as there are so many things on the list that take priority during a short hospital visit.

    In my opinion, it is all about how well you adapt to it and accept it. It is difficult because we can't let go of the fact that our hearing wasn't like this before, so it must be wrong or broken now, but that is because of the comparison. I honestly think if my hearing was like this from birth, I wouldn't really think anything of it and just accept that that is how it is, but because I have 26 years experience of sounds being completely different, I can't help thinking of the changes as a bad thing.

    I found it helped me to stop trying to reject the noises I thought of as wrong and just listen to them with a certain curiosity. I can be listening to someone talk to me, then suddenly a change in my hearing steals my full attention. It feels so weird to just keep listening to them talk as if nothing happened and not even change the expression on my face! I used to think "Oh No, what's happening??!" but now I think "Wow. I bet this person would be really shocked if they could hear what I just heard!"

    It's not nice feeling like you live in a world of your own that others don't share, but eventually your daughter may begin to appreciate the things that make her world unique a draw strength from it, best of luck to you both.

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