Chiari 1 malformation

(14 Posts)
chocciechocface Sun 29-Dec-19 23:02:50

I've recently discovered I have this. I had never heard of it before. I'm wondering if there's anyone on here who has it too?

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june2007 Sun 29-Dec-19 23:08:24

I know a child with this. I think it is one of these conditions that can vary quite a lot from person to person. The child I know has had vision probs and worn glasses from young and has ops. But when you see him in the playgroud you wouldn,t know his probs.

Chocl8 Mon 30-Dec-19 11:46:50

My DD has this (amongst lots of other issues). The Drs just keep a watch on it - no treatment planned (op) unless very necessary from symptoms. The Brain and Spine foundation run a Facebook group which I follow for general info.

MillieMoodle Mon 30-Dec-19 13:33:52

Yes I have a Chiari malformation, I can't remember if mine's type I or II though. Whatever is less severe I would think. Mine was discovered during an MRI following years of back pain, but it's not treated or even monitored.

I get a lot of tension headaches, always in the same place (right side of my head, round towards the back of my neck). I get a lot of upper back pain between my shoulder blades. Also I have proposed discs in the base of my spine, which "go" every so often. Even when they're OK, I get a lot of back ache. Not sure whether it's all connected but when I used to see a chiropractor she had 3 patients with similar back complaints to mine, who all had a Chiari malformation.

How did you find out and does it cause you any problems?

Claireshh Mon 30-Dec-19 18:13:56

I have it too! Mine was identified following an MRI. I had mentioned to the GP that I had crushing pains in my head when laughing, coughing a lot and when picking up heavy things. I was diagnosed just before I turned 30. I am now 43. I was a bit nervous about it when pregnant as I was worried the pushing part of Labour may cause the crushing pains. I ended up with a csection due to unrelated reasons.

OddBoots Mon 30-Dec-19 18:25:03

Mine was discovered alongside tethered spinal cord, once I'd had the cord released it took some pressure off my spinal cord and the chiari improved, I still get some symptoms but not as bad.

lyrebird1 Mon 30-Dec-19 19:27:13

I do. Mine was discovered due to me having symptoms because of a huge syrinx in my spinal cord. I have had a shunt fitted for that, and I will need another shunt in my brain soon as I have high intracranial pressure.
The Ann Conroy Trust is a charity specifically for chiari and syringomyelia, and they have a list of neurosurgeons and neurologists who have a special interest in the conditions. You can ask to be referred to one of them if you want to.


MillieMoodle Mon 30-Dec-19 21:30:27

@Claireshh if I laugh too hard, cough too much or pick up something heavy, I get a feeling a bit like crushing or pressure in my skull, although mine isn't really painful, more uncomfortable. I just asked DH if he gets the same as it never occurred to me that other people don't get that feeling - he doesn't get it. Thanks for mentioning this! Who knew?! grin

TheTempest Mon 30-Dec-19 21:35:14

I have a Chiari malformation too. I was diagnosed 3 years ago after an MRI as I had stroke symptoms after an operation. I get the crushing pain, have 3 prolapsed discs and scoliosis as well as a problem with my hip. I get horrendous headaches too and had bladder issues, I’ve found the doctors either don’t know what it is or dismiss the symptoms as being unrelated to the Chiari. I’ve joined a couple of groups on Facebook and it’s helpful to see how much we have in common symptom wise.

MillieMoodle Mon 30-Dec-19 22:01:31

@TheTempest do you think your prolapsed discs are connected with the Chiari malformation? I've long suspected mine are somehow - maybe it's caused my wonky/weak spine.

When I went to the doctor for the MRI results he googled Chiari malformation and offered no advice at all, so I've just carried on as before. That was in 2014, but I've noticed my headaches are occurring more often in the last year or so and the backache is there all the time.

chocciechocface Tue 31-Dec-19 16:17:00

Mine was discovered this year (I'm 48), because I get pulsing severe pains in my head after coughing, blowing a balloon, bending over, going to the loo etc - all pressure related. The pains travel over my head then stop. I have always had this but thought everyone did. I only went to GP when I fell over once after a particularly bad coughing episode. Initially she just said pain in the head after coughing isn't unusual. But I could see something register without her when I said the pain is so severe I can only bare it because I know it passes. She spoke to a neurologist, and he recommended an MRI. The Chiari was discovered. A second MRI, to check my spinal chord, found that I had 'wear and tear' in my neck vertebrae. I suspect that's from the way I tense up and involuntarily throw my head back to cope with the pain.

Do any of you have a cough? We're now trying to work out why I have an irritating cough which gets horrific when I have a cold. I've also always had this and am wondering if it's Chiari related.

Quite pleased to discover the rest of you. smile

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chocciechocface Tue 31-Dec-19 16:18:53

Which Facebook groups do you recommend?

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chocciechocface Tue 31-Dec-19 16:24:22

Apologies for repeated posts ... do you know if you have to notify the DVLE at all?

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chocciechocface Tue 31-Dec-19 16:38:23

Answering my own question re DVLA - yes, you do have to tell them.

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