January 19, 2018 at 8:39 pm #1147CaseyParticipant
Hi, I’m going on 2 years of attempting to get answers to my neuro symptoms and something in my lower body de-stabalizing causing symptoms all the way to my neck. I believe I may have a tethered spinal cord and it’s pulling down on my brain and pulling my hip and pelvic floor out and causing sudden weakness in my legs. I have 3 months of waiting to get into a neurosurgeon. In addition, I am sending my results to Dr. Bolognese and doing a video conference appointment with him. It’s a waiting game and I’m kind of sick of it. Just wondering if I could get an opinion in the meantime? No biggie if that’s not what you do here.
CaseyFebruary 12, 2018 at 1:18 pm #6244
Just a couple of observations here, first, the red line intersects your cerebellar tonsils but only very slightly, certainly not to fit the criteria of Chiari 1 but, your cerebellar tonsils are what’s referred to as ‘low lying’, which can interfere with the free flowing of cerebro spinal fluid at the cranio-cervical junction.
The cerebro spinal fluid should be able to pass freely between the head and the spine, if it is interfered with in any way, it can cause problems, particularly if your cerebellar tonsils act’s as a ‘bung’ at the cranio-cervical junction, this can contribute to raised intracranial pressure, which wouldn’t show up with a lumbar puncture. NEVER let them do a lumbar puncture on you.
Lumbar puncture test – DON’T DO IT!
I have heard that some of you, who’ve been lured into having a lumbar puncture have come back with a false ‘normal pressure’ result even though you have obvious symptoms of raised intracranial pressure. Worse still, due to the reduction of spinal CSF pressure, the cerebellar tonsils have ‘bunged up the plughole’ so to speak and this then causes worsening symptoms. So you don’t just get a false test result but you’re made much worse – avoid it at all costs. There are non-invasive methods.February 12, 2018 at 1:31 pm #6245
The green line is over what looks like a ‘pannus’ and the purple dot shows that the posterior arch of your C1 vertebrae may be slightly more forwards than it should be, these both suggest some cranio-cervical instability. The yellow lines indicate a loss of ‘lordosis’ of the upper cervical spine.
You may have collagen issues or you may be blatantly hypermobile, or you could have had an injury at some point in your life that was more serious than you thought it was. Either way you have to consider how to manage this. Any injury needs bracing immediately (trust me on that one!)
I suspect that your symptoms are variable, sporadic and intermittent because this is what is usually found with this kind of condition, as whatever part of the brainstem/spinal cord is irritated depends very much on your head position and degree of tilt. Symptoms can also be exacerbated by any degree of raised intracranial pressure.
You need loads of vitamin C to help repair defective collagen and I don’t mean gulp down a pint of orange juice because, your body does not store vitamin C apparently, so only a little will be used and the rest will be wasted. You need to take a little and often throughout the day, to give your body a fighting chance.February 12, 2018 at 1:41 pm #6246
It’s also important for you to observe the following:-
Forget working with the body bent forwards, or with your head down (in flexion) find another way;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
Look at ways of doing your tasks sitting down, wherever possible (this puts head less into ‘flexion’);
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Unstable Cranio-cervical joints need support – wear a Philadelphia (or similar) collar;
Your computer screen & your work need to be elevated, so you are looking straight forwards and not hanging head in flexion
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