CSF flow normal, but I dont feel normal

Has anyone been approved surgery with normal CSF flow? I really need to know I have 7mm of my cerebellum protruding through my foramen magnum more to the left than my right, but I experience a lot of the symptoms severally, and I’m diagnosed Chiari Malformation 1. I’ve been to many doctors, neurosurgeons one actually yesterday, and meds which I also prescribed a new one yesterday Trazodone. I pose this question because they don’t want to give me surgery until I have a high amount of CSF flow or in simple terms on the floor begging for help over something I’ve been telling them all this time is impacting my life already before diagnose. Sorry for the lack of info I’m just burnt out on explaining, especially to a bunch of mocking birds saying its headaches and the painful symptoms I’m having are NOT AT ALL related to what you the doctor have diagnosed me with.

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Hey JB1,
Firstly, Welcome to Ben’s Friends.
Unfortunately your experiences with the dr’s is not unusual. I too have issues with CSF flows (or lack of) and have a shunt to remove the fluid from within my skull into my peritoneal cavity. For many years I was told that there was no problem, it was all growing pains, a figment of my imagination and nothing to be worried about. Hmmm, something wasn’t right. It took something major for them to actually investigate and even then they had me on a ‘wait and watch’ scenario. When it comes to the brain the idea that none of our symptoms are related is impossible. That thing on our shoulders, our head/our brain controls every bodily function, so how can it not be related??? ‘Ohh it’s all psychological…’ like I’m imagining it all, if I was imagining it all then I should be able to imagine it away too. Well, that didn’t work.
It took a major incident for them to act. I was driving down the road and the lights went out, I couldn’t see. Very dangerous. But this was the trigger that made them act.

Often medicos need to see a scan, an image the helps prove that there is an issue, otherwise it can all be seen as anecdotal. Now, I will say here that although we may be of the belief that surgery will ‘fix’ the issue, this is not always the case. In fact the surgery itself can unleash a whole other range of issues (as it has for me). I have required a few neurosurgeries now (6) and although each has been to fix an issue, the flow on effects have been massive and life changing (and not in a good way).

I can completely comprehend your ‘Burnt out’. It can be both physically and emotionally exhausting to try and manage it all and often the medicos can be of about as much assistance as a handful of rocks, coming across with the attitude of “Well, I’m the doctor, so I know. You? Your just the patient. You wouldn’t know…” Ignorance and arrogance are like water and oil, they don’t mix. But often the medical fraternity seem to often have an excess of both. This is not an easy thing to deal with, we know this because we too are dealing with our own situations. This is not as simple as just a walk in the park. So come talk to us, we are here if you need to chat. I have found just in being able to chat to others in a similar situation has lessened my internal mental load. Just know you are not alone in all of this. Come chat to us.

Merl from the Moderator Support Team

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Thank you very much Merl your response alone has already lifted a mental load because I finally have someone to relate to. I’m now figuring out I’m only at the start of my journey an in for the long haul, but this will help me a lot.

And that’s what we are here for, to support each other. Others may try to minimise things, ie “The dr’s know what they are doing, etc, etc” but how on earth can we, the patients, minimise this? It’s happening to us and its all very real. ‘in for the long haul’ and LONG it can be. Trying to obtain clear information can be a fraught never ending process.
We know it because we live it too. As I say ‘Just know you are not alone in all of this’.

Merl from the Moderator Support Team

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@ModSupport
I just came across this thread and this caught my attention:

“It took a major incident for them to act. I was driving down the road and the lights went out, I couldn’t see. Very dangerous. But this was the trigger that made them act.”

My daughter’s most recent symptom has been exactly this!! Complete blackouts! When we saw her optic oncologist (just so happened that we had a recheck appointment already scheduled for that week—Thank God) he ran a lot of tests. One of those tests was an actual computer that showed her field of vision (and more importantly, the lack thereof). I have felt like this may finally tip the scales, so to speak, in proving that the Chiari is in fact causing her symptoms. The drs cannot simply dismiss the test results as something she could be causing herself. This gives me some much needed hope. As frightening as these episodes are (for both of us) is am thankful because I believe that they cannot ignore this problem. Especially knowing that her eyes are perfectly normal, she has no visual acuity problems and the optic oncologist said he believes this proves there is a neurological issue. He referred us to a neuro- ophthalmologist, unfortunately I got the call yesterday that they only see patients age 12 and up. She won’t be 12 until September. There is only 1 other in our state. I pray that they are willing to see her.

I think I’m experiencing something very similar to her but doctors can’t figure it out. I’m 5 months post op decompression now, but I feel like my visual problems after surgery are worse than before. I start to see all white and feel like i’ll pass out usually after crouching or when I first stand up. I’ve seen a neuro ophthalmologist and he couldn’t figure out what’s wrong than possible concussion from a car accident. Although I saw him before surgery, so the opthalmologist I saw today said i need to to return to one who specializes in neurology because the regular ones can’t help you.

@zombabe, I’m terribly sorry to hear you are having these visual issues post compression, especially. I’ve done quite a bit of research via this forum and have found that visual processing issues seem to be one of the symptoms that reoccur rather often. I’m not sure how familiar with this site you are, but I would highly recommend that you check out many of the posts from @gabby_jazzypants. I do not want to speak for her but I have seen that she gives very sound advice and has experience with visual processing issues after decompression. Good luck with your search and do ask questions, the members here are very willing to share their experiences! God bless you :purple_heart: