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Hi all,
I've not been diagnosed with Chiari but I'm starting to suspect it - I have IIH for 2 years and a lumbar shunt with no valve which has been shown to be overdraining in the past. I'm worried this could cause acquired chiari from the overdraining. My head pain is severe everyday, mainly at the bottom of my head at the back, I also have very bad neck and shoulder pain, mainly on the right side. My head pressure pain is worse upon bending, laughing, crying (10 times worse!), straining etc. I've always have issues with blurred vision, tinnitus etc with my IIH.
Over the last few months I've had a lot pressure pain in my face, nose, roof of mouth. But the main symptom which is worrying me and making me wonder whether it is worth me asking my neuro for a scan at my next appointment to check for chiari is that every morning when I wake up I have a throat pain on the right side only which only lasts for about half an hour after Ibe got up. It seems worse the flatter I've led in the night. I'm just wondering for those who have chiari, if you get a throat pain when led down from it or perhaps I'm barking up the wrong tree?
Any advice you can offer would be greatly appreciated. I'm feeling a bit lost on who to turn to with all this at the moment! Just had face/throat pain investigated by ENT who didn't find anything wrong with sinuses so I'm confused as to what is causing the pain. Thanks in advance!
0 likes, 7 replies
julia79586 michelle1290
Posted
I have a Chiari but haven't experienced throat pain. What I am getting is a 'lumpy' throat towards the end of the day but it goes after a night's sleep. I know that doesn't help much! It looks like you're pretty good at spotting things so why not note down the symptoms as they occur then show them to your neuro next time. I find it always helps to do this and often produces a pattern they recognise. There's usually so much going on in our bodies when we have a Chiari it's no wonder we get confused. Keep on at them, you can never ask too many questions and there are loads of people on here who can help.
michelle1290 julia79586
Posted
karen05086 michelle1290
Posted
michelle1290 karen05086
Posted
Yes I do have visual issues - I regularly get blurred vision and flashes in vision. I had papielledma in both eyes when diagnosed with IIH a couple of years ago so they inserted a lumbar shunt to protect me from loosing my vision permently - thankfully this is now protecting me from loosing anymore vision and I was very lucky, just have a slightly enlarged blind spot and a bit of periferal loss.
With your throat pain, do you find that yours is worse when your led down or upright? Will chiari only show up on an upright MRI and not when you have one led down? I had an MRI for suspected chiari 12 months ago but it was led down - I've since switched my care to a specialist neuro hospital who seem more advanced with their treatment so hopefully if I need another MRI they could do an upright scan.
Thanks so much for your advice. I hope your doctors are able to help your conditions.
karen05086 michelle1290
Posted
karen05086
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michelle1290 karen05086
Posted
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