Do I have a Retroflexed Odontoid and can this mimic a CSF leak?

I had a bout of whiplash in 2011 and since then I developed a hissing noise in my head that would go away completely if I laid flat for ten minutes. Over time, it got worse and took longer periods of time lying down for it to fully go away. Then new symptoms appeared such as constant sweating, heart rate issues, twitching, stabbing headaches, etc. and all of these symptoms followed the exact same pattern. My symptoms are 24/7 and TERRIBLE constantly now, no matter if I’m sitting up or lying down, the positional aspect faded…!! :sob: I’ve had two epidural blood patches that didn’t help my symptoms and a brain MRI with contrast revealed no abnormalities. I’m really at wit’s end here, I have EDS diagnosed last year, and had my 2nd blood patch on the 6th. The hissing noises in my head aren’t coming from my ears because my hearing and ears are perfect and haven’t changed at all. Yet the noises are getting louder and the other symptoms are also getting worse. The hissing sound coming from my brain instantly gets worse with yawning, dry heaving, straining, etc. I have a syringomyelia ~5 mm diameter in my thoracic spine. Eating salty foods seems to make my symptoms worse not better. Any kind of exertion makes my symptoms worse too… :worried:

The thing with the syringomyelia bothers me, because I read that nearly all cases of it are caused by some type of CSF flow disruption. Here’s a photo of my latest MRI scan

That was my scan with contrast to see if I had dural enhancement (CSF leak sign) which I did not… wondering if I should go back to my neuro?

Hey Yota,
OK, so firstly, I’ll answer your very last question “…wondering if I should go back to my neuro?” Yes. Some of your questions need to be answered by a professional who has ALL of your images, all of your relevant reports, right there in front of them because it ALL needs to be taken into consideration when making any sort of diagnosis. You seem to have a few underlying symptoms and this really can make things more difficult in obtaining answers. Your neuro is going to be the best person to be obtaining relevant information from, relevant to you.

I have had many CSF issues. Mine is not related to chiari but I have had many similar issues that you describe from the sweating (HORRIBLE sweating), heart issues etc, etc. Each symptom was viewed and treated individually and it wasn’t until I had a major incident that someone looked more holistically, then all the pieces of the puzzle started falling into place. I say ‘…pieces of the puzzle started falling into place…’ that was for me. Medically, the dr’s did not align the pieces at all. In fact some directly rejected any correlation at all.

I had a shunt inserted to regulate the CSF pressure within my skull and although those pressures were controlled, my symptoms were not, in fact they went into overdrive in a major way. I wasn’t just sweating, I was sweating profusely. I’d have to get up and dry myself 1/2 way through the night, I was so wet. I wasn’t just stumbling, I was lucky to stand upright at times and the headaches OMG, these weren’t just headaches, these were bolts of agony sent from the gates of hell. Nasty.

My hearing was also an issue. When I walked It sounded like slushing water and sound would come in waves. My balance was a mess, you’d think I was drunk. I saw a couple of specialists about it but neither had any great answers. One thought that vestibular reorientation may help, so I had the therapy but it didn’t help me. Another thought it could be a wax problem, it wasn’t. The most credible answer was that due to the craniotomy all of my cranial pressures were messed up and needed to settle into some sort of ‘normal’ and that took time.

Merl from the Modsupport Team

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Wow I feel your pain, BC every time I go to my Dr or N-surgeon All I get is no Kelly “ you can’t be having those symptoms because the books says they arnt to do with CM” so now I refuse and end up walking out the medical room thinking I’m going daft.
The water sound your hearing can I ask would u say I sounds like the noise when u open a can of soda/pop? Like a hissing bubbly noise???
Curious to know this as I hear this intermittently during the day which stops me in my tracks and I have to re assess what I’m doing to make it lessen…. My memory is also getting slightly worse (not sure if CM ) related but I’m only 39 but feel like I’m 70!!!

My health since having the decompression for CM has gone MASSIVLY down hill and currently on a heart monitor due to sudden episodes of passing out n then a HR of 155 again not sure if CM related but Red Blood Cell count also very low I just feel like I’m going down hill and it’s scaring me to death I’ve 2 children and a hubby and feel like I’m no good for them no more.

Hope everyone is keeping as well as can be and remember it’s us that’s goi g through all this, so if you experience what I do at the Dr don’t stand for it and demand u till u get a 2nd opinion CM is no way near understood like should be in the UK !!

Stay safe everyone. And remember we ARE CM WARRIORS XX

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Ohh, I can assure you, its not just in the UK. That attitude of ‘…because the books says…’ is pretty much universal and one I’ve battled with for many years. I had one neuro actually tell me ‘Well, I’m the Dr, I’ve done years of study and I know. You? you’re just the patient… you wouldn’t know…’ my blood boiled instantaneously.

I believe part of the theory here is that if we are questioning ourselves, our own mentality, we aren’t questioning them (WARNING: Dr’s HATE having their knowledge being questioned). It’s a bit of a safety thing for them ie ‘Well, don’t blame us…it’s got nothing to do with us…it must just be YOU’ like we choose to be in this position. It really can be infuriating.

Merl from the Modsupport Team