Hearing spinal fluid in my neck

General
21

Hey Allison,
This is an older topic and many of the posters have moved on and although my situation is not exactly chiari related I do have issues with CSF flow within the brain and so have decided to respond to your question.

In the mornings when getting out of bed I have a few issues. For me I believe the distribution of the fluid changes upon changing position and this causes my balance to go a little haywire. Initially upon standing up it can take a few seconds to a minute for that distribution to ‘normalise’, this can make me very dizzy and give me a POUNDING headache with a whooshing sound. I often stumble or fall backwards or over correct and hit the wall (I say ‘often’, my wife says ‘Always’). I have learnt I have to wait until it normalises before moving or I can stumble and find myself on the floor.
The ‘dizzy’s’ can pass relatively quickly, but the headache can last anywhere from 30seconds to a few hours. Often the associated headache worsens with bright light.

Merl from the Moderator Support Team

22

Thank u for the reply. That really helps, just knowing im not going mad. in bot getting much or any support from neurosurgeon. Feel at times that they think im lying or exaggerating, so sit judging my own ability to cope it. .I haven’t been on the site for a few years and get a lot of double vision so don’t see tgat well to notice posts were from a while ago.

How do u cope in general with it all day to day?

Thank u

23

Hey Allison,
“bot (not) getting much or any support from neurosurgeon.” From my experience this is common, VERY common. The attitude I get is “We operated, we fixed” But if this is ‘fixed’ then I can think of another word starting with ‘F’ that better describes the results.
Back in 2013 I had surgery, I took 3 weeks off of work and wanted to get back to work. I spoke to my bosses and told them I’d return but on reduced hours and reduced duties and they agreed. But things didn’t go exactly to plan, my symptoms increased badly. I returned to my pcp but his view was that I was exaggerating, he wouldn’t agree to medical leave and told me ‘just go back to work’ so I did. Well, I collapsed and woke up back in hospital. The surgeon was furious, why hadn’t I gone back to see him. The fact was to see him I needed a referral from my pcp whose opinion was ‘they operated, they fixed’. And they operated again.

None of us choose to be in this situation, so the idea that we choose to have symptoms is crazy. I have in the past questioned dr’s… … Ahh don’t do that… …they do not like being questioned. Not one little bit. We as a society seem to place dr’s on a pedestal as being all knowledgeable and having all the answers, but when they don’t have ALL the answers rather than admit it, they put it back on us. I have been given all sorts of ‘pseudo’ diagnosis ie psychosomatic, idiopathic in nature, hypochondria etc. It seems it just easier for them to say ‘He’s crazy in da coconut’ than to look or admit that there is an issue. The fact that they have chopped my skull open repeatedly never seems to be part of THEIR equations. When I queried one of the surgeons he asked if I intended to sue him. I was looking for answers not $$$$, but patient blaming is always easier then self examination. They want us to be judging ourselves, that way we don’t judge them. I’m often saying ‘Damn doctors’.

How do I cope? Well that depends, some days quite well, some days not so well and others days “Stop the world, I want to get off this ride”. I have come to accept that the medicos DO NOT have all of the answers despite their often inflated egos. These pains, these weird sensations are not a figment of my imagination, if they were I should be able to imagine them away. Personally I have given up on getting answers from them. I have exhausted all of my treatment options from acupuncture to massage therapy, from counselling to pain management training, from Botox to TENS machine. If a medico suggested it I’ve tried it and none of it was my ‘key’. For me it’s now all a case of management. Medication management, activity management, rest management, symptom management. I ‘try’ to keep myself occupied doing something, ANYTHING. I try to vary my activities so I don’t get bored. I have a mutt, he needs walking and loves a ball. I have a house and yard that needs maintaining. I have a shed full of tools, so I use them to fix and make things. For me just sitting down and thinking about the realities of it all simply sends me crazy (OK, so crazier lol). So I have to keep myself occupied.

The idea that we choose to be here now that’s crazy and insulting. No one would ever choose ‘this’ but the reality is, we are here so we have to manage the best way we can. Others want to judge, then fine, you judge. But here, you take my pain for a day, one single day, now see how you’d manage. I can’t seem to find any people willing to take ‘this’ on though.

No, you are not going mad or if you are, you’re as mad as the rest of us. So come talk to us because we know what this is like from our own experiences.

Merl from the moderator Support Team.

2 Likes
24

I am also currently 5 weeks post op. I had these symptoms before the surgery and still have them. I have a follow up this week with my doctor. I have head pressure on top my head, forehead, and in front on my face. Does your pressure ever feel like it is behind your nose?
I am going to try to explain my symptoms of hearing that squishing/water trickling in my neck to my doctor this week. Hopefully he doesn’t look at me like I am crazy. What is interesting though, before I got my surgery, there was some sort of buildup at the back of my head, they were not sure if it was a crystal or csf fluid. Maybe it is something that needs to be addressed since I feel no relief from my surgery.
What kind of surgery does the fluid buildup in the back of your head require?

25

Hey Wallace9,
Welcome to Ben’s Friends.

“What kind of surgery does the fluid buildup in the back of your head require?”
Firstly I need to say “We are not dr’s” and this really needs to be assessed by your neuros as there can be a number of causes and differing treatments depending on the cause.

Being that you are merely 5weeks post neurosurgery, you are still in recovery. How long does recovery take? Ohh, that’s a bit of a ‘How long is a piece of string?’ sort of question, there are just too many variables. Some people can recover really well and seem relatively unaffected and yet for others, it can be years. Me? I’m in the years category.

Post neurosurgery I had HUGE pressure behind my eyes, like my eyes were going to explode from my skull. The pain runs from my eyes, down my nose and in it’s bad stages involves my whole head. And yes, I got that dr ‘looking at me like I am crazy’, but eventually they decided I needed a VP shunt to remove the excess build up of fluid from within my skull. There are a few differing types of shunts or drains that are used in neurology. For some patients with CSF issues there’s a procedure where (in very basic terms) the dr’s places a ‘patch’ over a leak. But, depending on the cause, there can be a few differing treatment options and this is why I say ‘…it needs to be assessed by your neuros…’

Merl from the Moderator Support Team

26

Im brand new to this site, dx w/Chiari 2008. Prior,post and present STILL Hear water gushing sound, no matter how many times i said its not in my ears… it’s in my head a very loud drone like noise( some days as equate it to a huge lawn mower). Fast forward, was tested endlessly by every type of doctor for ringing in my ears, tinnitus, literally no one was listening to me, i heart it in my head! My voice is loud because of ut, any silence is agony,i must constantly have backround music, TV for sleep etc. My 5mm plus syrinx swishes back and forth back and forth all day, everyday in my cerebellum fluid. Some activities and definitely some emotions make it worse, louder. Certain pitches and lights create a tremendous burst to this already annoying sound.

I live with it,i excuse myself in situations that intensify it, family have become numb to it, husband thinks its crazy and says it’s probably my hearing loss…also a result of cm. So it’s just comforting to read my very first article as a new member about this…

I knew i wasn’t crazy, what purpose would i even have to make something like this up, jeesh…ok just learning the site and i think this was an old topic, but hey thanks all for sharing

27

Hey Patti,
Welcome to Ben’s Friends.
Yes, it is an older original post, but that’s OK. The information is still relevant.
I don’t have chiari as such, but I do have some major issues with CSF and as a result also have hydrocephalus (water on the brain) and a shunt (a plastic drain tube) in my brain to ‘try’ and manage it all.

You state "… Prior,post and present…’ When you say ‘prior’, prior to what? Have you had surgery? or are you meaning prior to diagnosis of CM?
Some medicos are of the opinion that if your tonsil is less than ‘x’ mm, then you won’t be symptomatic. But if you read through some other community members posts you’ll find that the tonsil size is not always the determining factor. In other words you can have a smaller tonsil but still have some major symptoms.

The tonsil can completely block the aqueduct, where the fluid leaves the skull, and this is often what medicos look for, a complete blockage BUT there can also be a partial blockage and this can create what is often known as positional hydrocephalus. When we laydown our brain (and it’s contents) changes position. This positional change can also block the aqueduct and allow the fluid to build.
A simple CT scan can show any fluid on the brain, but I’d also recommend that you take note of the time and your activity when you notice your symptoms increasing. I say all of this because in the morning, OMG, my balance was/is a mess, often finding myself in a pile on the floor if I go to move to quickly. But when I went for a scan I’d been upright for hours, travelled to the hospital, a 2 hr trip, then had to wait for the medicos. So they scanned me and said “we can’t see any issues”, the fluid had drained during the day, but at night, up goes the pressure again. They had me stay overnight at hospital and scanned me in the morning… …and sure enough, there goes the fluid. No wonder I was hearing swishing in my head, it was full of fluid.

Everybody thinking you’re crazy… …ohhh, I know that all too well. The put me in a psych ward ‘cos you just can’t be in THAT much pain. We can’t find anything…’ until they did find something. Just remember you know ‘You’ better than anybody and if something is not right you must speak up.

After the psych ward fiasco I shut up about these weird symptoms I was having. Didn’t tell anyone. Just put up with them. Add 5-6 years, I’m driving down the road one day and saw this weird rainbow flash in my mirror and suddenly I couldn’t see. Scary as all hell. I go have a scan and the dr comes out with ‘…ohh look what we found…’ like it was all something new. ‘…Why didn’t you speak up earlier…’ tsk. For years I was made out to be crazier than a box of frogs by these ‘medical professionals’ and I no longer play ‘the Dr is always right’ games anymore. I query everything. I know ‘Me’ better than anybody and I’ve become a VERY strong self advocate. I am not being railroaded (pushed to one side) again.

My recommendation: At the very least, get your pcp to document your reported ‘symptoms’. This way if there is some sort of pattern, it can be identified. Also if something suddenly happens it’s not that the medicos have to start from ‘0’, there is information somewhere. You can keep your own diary, but when it comes to medical, they can take our information as hearsay. Reports from Dr to Dr tend to hold more weight.
Also ask your pcp for a head CT, the report should show the tonsil size in comparison to previous scans. That can give you some idea if the issue is becoming more of a concern ie excess fluid.

And just remember you’re not alone with all of this. We know because we’ve lived it too.

Merl from the Modsupport Team

28

WOW! I just read this… but honestly it’s been a long day( aren’t they all,lol).

I will read this over again slowly and carefully and respond appropriately but thank you so so much, extremely interesting.