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Chiari Northern Ireland, UK

Hi I've been recently diagnosed with chiari type 1 and have been referred to neurosurgeon but may have to wait up to 48 weeks for a basic appointment to even talk to him! Struggling with this recent diagnosis and what may happen in the future. Is there anyone on this site from Northern Ireland, United Kingdom that could give any advice? Thanks x
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  I know we do have members from Ireland and the UK....and I am sure they will reply as well....but the wait time can be just as long here in the States.....so many are being DX'd with Chiari and there are far too few Drs well informed and experienced with it that we get brushed off or sent to many other Drs..we have dubbed this "the Royal Chiari Run Around".....

May I ask what symptoms u were having that u have had the testing to locate this condition?
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Avatar universal
Hi ya, I'm from ni and having my surgery on Tuesday 28th jan. I found out I had chiari in nov last year just so it has all happened very fast.

Pm me if you want to chat.

Pam
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Avatar universal
Hi Selma & pam

Thanks for replying! I,ve had headaches for years, vertigo & within the past two years numbness in legs, feet, arms face etc with burning & tingling on face, chest pains & shortness of breathe, weakness in arms & legs, stumbling when walking & my memory was getting worse. I thought I maybe had ms and was sent for an MRI got the results in dec and as I had never heard of chiari before I'm just struggling mentally and physically with it. I have so many questions to ask the neurosurgeon and my local doctors don't really know much about it! Feel as if I'm in limbo as I'm not sure what happens next?! Thanks Selma & Pam for your fast replies xx
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Avatar universal
Hi Pam. Thanks for replying! I'm still trying to work out how to use the site so will pm you once I figure it out! Hope you are keeping well, things are moving fast for you! X
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620923 tn?1452915648
COMMUNITY LEADER

  I can offer insight as to what happens next here, and for most..as all Drs are different and so are we, so what we need next may vary.....

Most times a CINE MRI is done to see if u have an obstruction to CSF flow...MRI's to see if u have syringomyelia, disk issues, tethered cord...then other testing to rule out related  conditions like ICP, POTS, Sleep apnea, ehlers-danlos, and even low levels of vitamins and minerals....plus ruling out non related conditions like MS<Lupus, and Lymes.....

For u asking the Drs what is next will have to do with the symptoms u report so be sure to tell them everything, hold nothing back as it may help the Drs decide the best course of action for ur treatment.
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Avatar universal
Hi Pam. Thanks for replying! I'm still trying to work out how to use the site so will pm you once I figure it out! Hope you are keeping well, things are moving fast for you! X
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Avatar universal
Thanks Selma, that helps a lot! I've only had one MRI it showed the chiari and disc issues (can't remember exact wording) in lower back,back and hips get extremely sore & seem to seize up even turning in bed agony and walking almost impossible! I don't know if this is related? Also frequent toilet issues, insomnia & depression! Again I don't know if it's all related? Is the CINE MRI different from a normal MRI? Sorry for all the questions this is all new to me! Thanks Selma x
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  No worries, that is why we r all here.....

A CINE MRI is similar but is done in 2 parts, the first is just like ne other MRI, it is the 2nd part that is different, they inject a contrast dye and use clips or leads to track ur BP, the CSF is recorded in motion instead of still pics to see if the cerebral tonsils pulsate along with ur BP and or obstruct ur CSF.flow.

If u had one MRI I am confused as to what type it was since u said it showed ur Chiari and showed lower back issues...normally we have individual MRI's for each area, Brain MRI w/wo contrast,,,,a cervical spine MRI, a thoracic spine MRI and lumbar spine MRI....then of course the CINE MRI....I know it's alot, and I felt I should be a walking magnet....lol...

Ask all the questions u feel the need to : )
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Avatar universal
Thanks Selma, I had the one appointment which lasted 1.5 hours! They scanned my back first then I had to get up and they adjusted it for the back of my head then Scanned again, this was my first MRI so I thought this was normal. I didn't have any contrast dye thou? You have really helped me with info and it's difficult to find any info in Northern Ireland although I have found a national rare diseases day coming up soon! Thank you Selma :-) xx
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Avatar universal
Hi Pam

Apologises for getting your name wrong in the last mail! My head is away! x
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