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Chiari Malformation

8 replies

Marylou62 · 19/04/2014 11:22

Hi all...just wonder if anyone can help me get my head round this? I had severe but short lived headaches for a year and after many tests, I have a Chiari Malformation. (The opening from my skull is slightly bigger than normal so my brain 'falls' into my spinal column and presses on the brain stem and blocks the flow of spinal fluid.) I actually diagnosed myself because the Drs were stumped!!! The headaches have changed my life as I find bending difficult and even getting up from bed can be a chore! Accupuncture has helped enormously, but at £15 a week (luckily found a neighbour who does friends rate!) I am struggling. Is this for life? I cant even garden anymore!! DH is great and will always bend for me! 'can you get that pan on the bottom shelf' etc. But I am so p**d off at yet another weird thing that I have got. (I have Lichen sclerosis, I had PUPP during 1st pregnancy, Hemiplegic migraine in 2nd labour.) Has anyone had this and 'cured' it? How? Please help as I am so sad and see no end to this.

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notenoughcake · 19/04/2014 22:21

I don't know anything about this condition but did recently see a post on a Facebook group and the unusualness of the name stuck with me. If you type ML Chiari Malformation into FB search you should find the group/page and may get the advice/info needed. Hoping you feel better soon.

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Marylou62 · 20/04/2014 08:09

Thankyou notenoughcake. I will do that.

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Marylou62 · 21/04/2014 08:51

Anyone else....? Please.

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nc30pete · 11/05/2014 21:17

hi there, just found your post on a search via google. I have had bad head pains and the rear of my skull and just had an mri scan done on the 15th of april . The docs phoned me a couple of weeks later and told me i have nothing wrong with me but im very skeptical about that, all he told me was i have a headache - which i find hard to swallow as its lasted nearly 6months. I got my mri scan pics from the hospital and looked up chiari malformation and im sure i have this defect. Ive just got to wait for my follow up appointment with the neurologist and discuss it. Im just not accepting the diagnosis so far of a headache. Ive been on all sorts of drugs, anti depressants , beta blockers, pain killers with anti inflammatory - you name it they put me on the drugs conveyor belt...

Did you get checked for csf flow ? im presuming you have had an mri scan

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sunbathe · 11/05/2014 21:22

Mary, so is this something you've always had structurally, but it's only having an effect now?

Has something changed?

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SwedishEdith · 11/05/2014 21:29

Hi. I'm sorry to hear this. This group might be able to help you with any questions Ann Conroy trust It was very supportive for the person I knew with this.

It is quite a rare condition and, yes, it is for life. I'm not up to speed with current treatments though.

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starfishmummy · 11/05/2014 21:44

Perhaps your gp should refer you to a nerosurgeon who can discuss whether surgical.decoy.mpression is an option for you?