Hydrocephalus hissing

[14penny]

Hi all I had a third ventricular op for hydrocephalus no shunt needed this was done in 2009 nearly 10 yrs ago and I have had continuall hissing in my head I have tried everything to get rid of it white noise noratryptline etc but not helped has anyone had this problem - would love to hear

14penny

[StrawberryCream]

Has Tinnitus been ruled out?

[14penny in reply to StrawberryCream]

Well it is classed as tinnitus but it wasn't there before op so I am trying to see if anyone has experienced this after surgery I have gone down every avenue as tinnitus is just a word covering any noise in the head and I know the surgery started it off as I had never had this before I.

[WinB in reply to 14penny]

I get it Penny a continual sound like buzzing and sea shell up to ear, I sing to get rid of noise but upset family lol ..Seriously not nice is it. I also feel like my ears full of water so seeing doc xx

[14penny in reply to WinB]

Hi thanks for reply and I hope doc can help you more than mine as they are sending me from Kings to a local neurologist but honestly what can they do don't think I will let them tinker with my brain any more but I wanted to hear what others are suffering with it's like being in a wind tunnel hope you have better luck than me 😊

[WinB in reply to 14penny]

Mine has an echo in the ear nearest to shunt I am putting it off as I don't want anything done to my brain again also. Scarey isn't it. So Penny after you ha ha xxxx Good luck with it .. Coward I am xxx

[14penny in reply to WinB]

your not a coward I wont let anyone go near me again I havnt got a shunt as I had a thirdventriculostomy at Kings and had hissing ever since so used to it by now I do wonder what it would be like to have a quite head LUXURY Good Luck.

[WinB in reply to 14penny]

I had my op for SAH at Kings College Hospital, I am so glad I made it through, We are Survivors Penny, some do not make it through the op. So I count my lucky stars and make every day count. My hubby nearly cancelled Shunt op as he was scared for me. But after speaking to a John Ling (he liased with my Surgeon a Mr Walsh) and Mr D Walsh advised him to have it done and hey presto here I am. I was in cuckooland for quite a while and the shunt for Hydrocephalus woke me up. I was talking to my parents and singing with my brothers who had passed on. So as in that film 6th sense "I was talking to dead people ha " Weird huh xx Glad we are both here to tell our stories, hissing, buzzing and all xXx You keep happy and take every day as it comes. Take care Penny oh also my Mum wouldn't speak to me, Ta Mum xxxx I had Ventriculitis, UTI, and Sepsis and I remember none of it just chasing Mum lol xxxx Hope the hiss/Buzz noises subside. Passes a smile for a noisy brain

[14penny in reply to WinB]

Thanks for your reply it cheered me up seeing how well you are coping it made me feel all is ok because sometimes I think something is going to happen but I know it won't now but I too had some strange things going on after op but all settled down now I am glad you went for the op small price to pay for life wishing you well :))

[WinB in reply to 14penny]

Keep well Penny and less stress is good, we worry about our noises and I washed my hair yesterday couldn't hear any noise and the first one I thought of was You "oh must tell Penny that", so I am still a bit daft like that ha ha xx Now to get walking better as 600 yards and back aches lol Keep well xxxx My aim is to walk around a supermarket now why would I miss that but I do !! lol

[14penny in reply to WinB]

Hi, was nice to hear noise went ehrn washing hair wish mine would go away the funny thing is sometimes I hear certain noises on theme tunes on telly and it mimics the noise and makes it worse also bending over it can build up to a crescendo| lol. but when busy which I always am I don't notice it so much but supermarket shopping do you have balance problems as I do only when closing eyes ? Keep well.

[WinB in reply to 14penny]

My hubs keeps playing Queen songs so it goes "Oh Galileo Galileo Beelezebub" ha ha .Well at least we know the tune of the hissing so sing along Penny xxx and be happy, Just got up and it has no tune yet but I'll make up one later on xxxx

[14penny in reply to WinB]

Hi, it sounds like you enjoy yourself and it's good that you do, I try not to think about it too much keeping busy really does take your mind off the noise mine is flat and boring suppose I could sing above it all just think I will get some strange looks when doing shopping ha ha.

[WinB in reply to 14penny]

Hope all is well your end Penny love Win over and out XXXX Keep smiling xxxx

I get balance problems in the middle of the night when it is all dark, so I sir up slowly swing my legs out of bed still sitting wait a minute or sometimes 15 seconds lol and get up ..never rush up lol xxxxx unless you need to go xxx haha

[Avro]

Hi Penny,

I had an ETV for Hydrocephalus in October 2016, prior to surgery I had intermittent low grade tinnitus two or three times a day. It only lasted a few seconds and then went. So it was no big problem. But since I can around from that surgery I've had constant hissing in my left ear and sometimes both. It's all the time and never stops.

I then had a shunt fitted for my Hydrocephalus about three months ago and though it relieved some of my other symptoms, such as mild dementia and eased some of my balance problems, the tinnitus is still there all of the time.

After the ETV my Neurosurgeon said this sometimes happens but goes after a while. Two and a half years later it is still with me too.

[14penny in reply to Avro]

Hi Avro, Just to say so sorry your getting the Noises continually as I am it is so frustrating as I have to always be busy as if I sit and read a book or am in a quite room it is really annoying as I cannot concentrate considering I had my op in Jan 2009 and neurosurgeon at Kings said he had never heard of anyone getting thishissing and he didn't think it was his tinkering (his words) but I had never had any noises before only balance problems it does make me wonder what it can be as you don't hear with your brain only your ears my guess is as good as anyone's I suppose and I do hope yours subside Good Luck Penny

[Avro in reply to 14penny]

Hi Penny,

The brain processes the sounds that come from your ears, so it does make sense to me. And the way it has manifested itself with you sounds the same it has with me. There's so much they don't know and to perform the ETV they bore through healthy brain tissue that doesn't usually cause damage. But they don't know what it does precisely. It would be good if some others got in touch who have had the same experience. Until I saw your post, I thought I was unique, but now I know I'm not!

[14penny in reply to Avro]

Hi Avro so glad you got in touch I too thought I was on my own with this and am so used to the noise now but as you say I don't think they know enough about the brain and what it can manifest. I wish you good luck with it and hope others will read this post as I would love to say on my yearly checks at Kings neurology that I am not alone.

[Avro in reply to 14penny]

Hi Penny,

7 months and no further feedback from anyone else, I'd say we're fairly unique, but that doesn't diminish it. But might explain why some NS have never come across it.

[14penny in reply to Avro]

Hi Avro,

Yep we are very unique, I wondered why the NS always looks at me in an odd way on my yearly check up especially when I say the noise can be made to go higher if I open my jaw really wide, makes me feel a bit freaky. Good Luck

[LikeAHoleInTheHead]

Had op for 3rd ventricular CC a year ago, no shunt or ETV, but have been having what I would call 'tinnitus' ever since.

Not really sure it's strictly tinnitus - sometimes it is definitely a high-pitched noise in my right ear, but it's more a horrible sensation deep in my ears/head, sort-of-like a strange feeling of a pressure differential. Gets completely unbearable if I put over-ear headphones on. Also get a really weird 'squelching' noise in my right ear when I swallow or burp sometimes.

Really haven't been able to decide if it's to do with the brain surgery or not, as I'd been having weird issues with my nasal-passages and ear canals (sometimes feeling like they were full of water or glue) for some time prior to the surgery - in fact it was an ENT consultant I was seeing for that who sent me for the CT scan that identified the cyst and hydrocephalus (it also apparently showing nothing wrong with my sinuses, which I find baffling as I can feel a deep blockage in my nose much of the time).

Neurosurgeon just denied it could have anything to do with the surgery, just said maybe it's an infection and I should see my GP (which I can't, because of the pandemic lockdown).

[LikeAHoleInTheHead in reply to LikeAHoleInTheHead]

A complication is that somehow during the course of surgery a long-ago-root-canalled tooth broke. And it's close to the ear that now has the tinnitus. I couldn't get to see the dentist to do anything about it because of the covid lockdown. Has occurred to me that maybe that has gotten infected and it's causing the ear problem (no pain because there's no nerve in it due to the root canal)