Do you get throat pain with your chiari?

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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!

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  • Posted

    Hi Michelle,

    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.

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    • Posted

      Thank you for your reply Julia, that's really good advice! My neuro has just asked me to start a pain diary so I think it will be a good opportunity to note down any additional symptoms I'm experiencing. It is all so very confusing so these support forums are really useful - thank you!
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  • Posted

    Hi Michelle, I've not been diagnosed with chiari but have had an upright MRI which showed 3 mm descent so I guess its probably classed as some grade of chiari. Also got offcentre odontoid peg, thinned transverse and alar ligaments, abnormal antlanto-axial rotation and kyphotic clivo-axial angle. I get a burning ache in the back of my throat too but I don't know which of these injuries is causing it. My sinuses are also affected feels like something is pushing on them from inside my head, turbinates always throbbing, sinus like headaches, start with runny nose and nasal drip on exertion. I was unable to blow my nose for a long time and sometimes still struggle because the back of my throat lifts up and blocks the process. My doctors can't find anything either. Do you have any balance or visual problems?
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    • Posted

      You've got so much going on, I'm afraid I don't know too much about your other issues.

      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.

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    • Posted

      Hi Michelle, I get my throat pain on lying down but sometimes also on standing. Suppine MRI's seem to be the mode of the NHS. I would say that if you get unremarkable results, then go for the upright MRI. The images are taken in the normal weight bearing position and consequently are more able to detect abnormalities. You also need to have it done by radiologists who know what theyre looking for. There are not many in the country and thats why chiari is still relatively unheard of in the UK. The majority of neurologists are unaware of chiari as they have become qualified long before it was even heard of. I went to Medserena in London please take a look at their website. Wish you all the best in getting some answers and
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