Chiari Online Support Group

Syringomyelia and Walking / Paralysis

I am just freaking out. I had decompression in 2014 and yes I have syringomyelia but lately everything is getting a lot worse. Normally I am use to balance issues and much more too much to write. BUT lately I can walk tops 15 minutes before my legs go limp (paralysis) kicks in. Before this happens I feel pressure build up in my particular part of my spine (mid section) plus the pain everywhere becomes so intense. I have had issues where my legs in the past went limp and was in a wheelchair then I’d be fine after some time so it comes and goes BUT lately this has been happening every day, several times a day. I literally feel like a ticking time bomb every time I start walking. One day my legs just stopped and I was hanging on to the bar in the kitchen screaming wheelchair because it happened so fast.

Plus if I get upset these symptoms including all my symptoms will flare up quick. Someone suggested it could be intracranial hypertension or hypotension.

My neuro gave me steroids which helped for 1 day and then all my symptoms came back with a vengeance. She gave me steroids because my whole body was in sooooo much pain. But she did also want me to get a cervical & thoracic mri w/ and w/out contrast plus a lumbar mri w/out contrast which will be done next week.

My question has anyone lose their legs this quickly due to their syrinx? Or have any other advice with everything I stated above. Not sure if I should just stay in my wheelchair till I get the results so it doesn’t cause permanent damage.

Thank in advance. <3

1 Like

Hey Brittan,
It is completely understandable that you are ‘Freaking out’. I have intercranial hypertension (and have had hypotension previously too) and it can be scary as all hell.

For each individual the symptoms seem to vary, for some it can cause a headache from hell, for others the headache may be minimal but their vision can be affected or their hearing seems ‘off’. Then there’s the functional symptoms, limbs that don’t act as ‘normal’.

My symptoms fluctuate massively, a headache for me is normal, daily. Sometimes I have a weakness on my right side. Sometimes I have tingling in my hands and feet. If I exert myself I get these super bright stars floating in my vision. Initially post surgery I could hear my pulse in my ears and when walking, with each step I would hear a whooshing sound, like I was walking through water. Not painful but very disconcerting. And as for my balance (physical) it’s a mess. If I stand and move too quickly I walk into walls/furniture or see stars then find the floor with a thump. I have to give my body time to adjust to my change in position before moving. Then there’s the mental balance, none of this is normal and that must have a flow on to our mental health.

A BIG part of the problem is that ‘fluctuation’, today I maybe highly symptomatic, but tomorrow things settle somewhat. I can go and see a dr but often when I do my symptoms seem minimal. I explain it to the neuro and he looks at me with that expression they all have of ‘This bloke is crazy in da coconut’ or say things like ‘Ohh don’t worry, it’s all in your head’ Well, tell me the damn obvious why don’t you. But they are talking mental. I ain’t crazy, something is simply not right. I had one neuro tell me “Well, just don’t laydown for too long…” his theory was that gravity would assist in draining the fluid, so movement was a must. But when I can be so unsteady laying down is sometimes the only safe thing to do. If my symptoms were at a set point each day I could put strategies in place to manage and work around them but due to the varying fluctuations I can never tell.

Now, I must say here, I’m no dr. BUT from my view/experience, you are doing all of the right things. You’ve seen the dr, they have given you medication (steroids) to assist. They are sending you for scans and until those results comeback there is very little you can do but manage the best way you can for you. There are some people who think they know all about it or will have opinions on what you should or shouldn’t do, they are NOT in your position, you have to manage all of this for YOU, not them.

Best of luck with it all, this ain’t easy and please do keep us informed, others maybe going through something very similar.

Merl from the Moderator Support Team

I’ve just now put it together & I thank you for your post! Over the past several weeks, I’ll lose feeling in my legs from just above the knee, down to my toes for no apparent reason. Before this, I’d have to check my feet (& toe) position when sitting because I couldn’t feel them when sitting. I’ve only just recently learned of my CM & I didn’t know that could be the cause until your post now. Thank you for sharing this!

Syringomyelia is the redirection of CSF into the Spinal Canal. What causes this? Is there a cure? I wish I knew the answers but I would recommend you looking at a clinical study that was done in 2016 and then repeated in 2018. Reference Scoliosis and Zebrafish. You will find information on Syringomyelia that I think you find helpful.

Hello I’m 25 years old I was diagnosed in August of this year with Syringomyelia after i started experiencing numbness in my legs and having severe back pain. After an MRI they discovered my Syrinx which was massive going from C2 to T12 and being wide as well it was distending the spinal cord. I had chiari decompression in September and am now “recovering” what I’ve learned in only the few months of having this disease is that there’s hardly any knowledge about it. Drs don’t really understand it let alone how it forms or how to treat it… things like shunts are guess work at best that generally leave people worse off than before. Syringomyelia is rare which means the government doesn’t put any research dollars into it, so unfortunately the lack of knowledge won’t be resolved in my lifetime. My neurosurgeon told me that decompression would solve all my problems, and when I see him and explain my new issues like loss of sensation in my hands or worsening circulation it’s always not a problem and I’m “getting better” seeing your post only shows me what my future will be like and it’s not getting better. I’m so sorry for you I truly am. I know they say our disease isn’t a death sentence, but unfortunately it is a life sentence. I’m young and stupid and probably am in no position to give advice but my research into our disease has led to a name of a doctor that keeps coming up named John Oro he’s in Colorado but he’s supposed to be an expert in the field of chiari and Syringomyelia. I’ve never seen him and can’t afford it, but if you’re desperate enough for something he may be able to help.