Chiari Online Support Group

Hearing spinal fluid in my neck


#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.