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Syringo myelia - Carers UK Forum

Syringo myelia

For issues related to specific conditions and disabilities.
My original posting about syringo myelia on the spine, wasn't moved over to this new section, so I'm just moving it now. Hubby has this, been developing since he had a motorbike accident in his late teens, unbeknown to the NHS, as a result of the trauma to his neck. Didn't get actually found or diagnosed until hubby collapsed in his mid-thirties. By then, too late to operate and stop it, so had spread all down his spine and hubby in wheelchair for 15 years. I don't know anyone else who has experience of this type of spinal injury.
I'd never even heard of it until you mentioned it Fran. Can you tell us more about it?
In simple terms, excess fluid from your brain usually dissipates away through your normal body workings. With syringomyelia it drains into the spine and mixes with your spinal fluid. A cyst forms causing pressure and pushes the vertebrae apart. It effects the spinal column because it stretches the nerve fibres, spinal cord etc. and the cyst can grow and cause more problems. The fluid can be drained from time to time, or you can have a shunt put in. I think that now, the cyst has become kind of saturated with fluids, so they do now start to dissipate in the usual way, but I'm not entirely sure on that part (I shall ask next time we go to Spinal Unit). Because it effects the nerves and fibres, messages stop reaching your brain so there is difficulty coughing, sneezing (I say he sneezes like a girl!!! very daintily), he can't shout much either. But it effects different people in different ways, of course. Sometimes he has feeling in some parts of his body and then other times he has feelings in different parts. During his MOT he has 'cotton wool' and 'pin prick' tests all over and no two body parts have the same reaction. His consultant is used to it being all haphazard like, but if we see a new doctor, they can't believe it, there isn't any patten to it, see and they are confused as to how to fill in the tick box form! It's quite funny to watch them testing the same area over and over again and getting different results each time ....... !Hubby's cyst started as a result of the trauma to his neck after his accident and, not being detected sooner, grew and has wrapped itself all the way down his spine from top to bottom (a right mess really). He had it drained once a long time ago, but won't do it again as he's terrified of operations and things going wrong etc. Was the NHS' fault in the first place for not detecting it starting after the accident. Another story! Our wonderful spinal unit keep checks on it and he has to go in for an MOT once a year to have scans to make sure it's not creeping and growing more. It seemed to have reached its peak some years ago, but they have to make sure. They are wonderful, if we are worried about anything at all, however small or silly all we have to do, day or night, is pick up the phone and someone will talk to us or ring us back within minutes. SO - syringomyelia is a cyst on his spinal column, filling up with excess brain fluid and spinal cord fluid, causing pressure on the spinal cord and spinal column. Hope this explains a bit. Fran xx
My apologies, I spelt it incorrectly before. I have changed it and this is the correct spelling now.
Thanks for the info, Fran. It must be frustrating because of the way sensation changes all the time - hard to tell what's a phantom sensation and a real one, I should think.
Sounds awful Fran and frustrating as it wasn't diagnosed when the accident occured. I've never heard of it before either.

Hugs to you both
Bluebird xx
Well, all his nerves are all over the place. Sometimes, even he doesn't know which bit is going to be sensitive until you touch it (ie. cleaning his teeth, scratching his nose) and then he jumps like hell. It changes from day to day, never the same twice. His 'snoring' machine is working though, getting more air into his lungs and body during the night has helped enormously, he's not so tired during the day and I've stayed in our bed almost since the first night.
Oh - and little things like sneezing and coughing or going out from indoors (shops, home etc.) into the cold open air can cause him to spasm and fall forwards in the chair (he would totally fall forwards and out, if someone didn't catch him and push him back again). It's the cold air, see, touchy nervous system etc. The people from the NHS didn't believe us when we told them about this and WHY we need 24 hour care. This was when they were deciding if he was eligible for Continuing Health Care or not (they even said NO, so we went to a tribunal who told them what for!........... and made them look really stupid for not understanding, hee, hee). One of the nursing representatives even told me that 'accidents during the night' would hardly ever happen.! Oh, yeah????? What did she know about it? What understanding does she have about spinal injury of hubby's type???? Absolutely NONE and there they all were, adamant that he didn't qualify for CHC. It's a good job we did go to the Tribunal, a panel of experts, third parties who DID UNDERSTAND THE STATE OF HUBBY'S HEALTH AND THEY'D NEVER MET US BEFORE!!! It's obvious he's going to need NHS health care for the rest of his life, just by looking at him, he's not miraculously going to recover and get up and walk again or be able to sit in a chair or on the toilet by himself ever again. So-called professionals get my goat, they really do.
Sounds like you've had a hell of a time Frandrake and it still continues. Why do we have to fight so hard for what we really need Image

I wanted physio for Mum to see if we could ever get her out of bed again (I'm not one to give up either), the Doc says worth a try, the community physio says (without seeing Mum) not worth trying, she has dementia, don't bother Image A DN came last week to see her heels as I'm worried about pressure sores and she said don't worry they look fine although Doc saw them and said they are getting bad, I mentioned physio to her and she said 'your Mum seems fine, I'm sure she could walk'.
Why can't any professionals agree with each other and just get my Mum the help that she flaming well needs. It really does make you want to give up, fighting the powers that be just makes caring for someone even harder.
Rant over, I feel so much better now. Image
My friend has this condition. She was told it was injury to the base of her brain by forceps during her birth. She had an operation to stop the fluid dripping down into her spine some years ago and I believe she told me they couldn't stop it dripping but instead re- directed it round her body. She can walk - slowly with a stick for short distances, has trouble with her balance and pain in her feet, I believe from the nerves. At best she can do a little work around her home each day - but what me me cross is that she can't get DLA because she can manage (even though with a struggle) to do her own personal care. Life can be so tough at times!!! Map