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Just thought I'd update you all with where we're at and any feedback you have!!
so since last time I've had 3 CT scans now - had one 11 days ago at the QE hospital (passed out again so went there) then went back yesterday (passed out for a good few minutes this time after being very 'drunk ' for the last two days)
My tonsils is 8mm - is this good / bad? What's everyone else's been?
also I do have the hydrocephalus- the neurologist I saw yesterday compared my last two ct scans and it seems my ventricles are a lot more swollen yesterday than 2 weeks ago which shows the fluid is increasing - I know this isn't good!
my symptoms are getting progressively worse and this is also a concern to them. I'm passing out for longer and more frequent, my speech goes so slurred now most days. I sound as drunk as a skunk! My balance is totally off now. I tend to walk to the right constantly and the pain in my head is just increasing, also in my neck and back. I finally have my MRI tomorrow on my brain and the neuros ordered one for my spine also to see if there is any syrinx present.
So im finally under the famous dr Flint. The lady I saw yesterday works under him and she is emailing him regarding me as he is also a specialist in csf and she's told him he needs to see me ASAP which is a relief. With the 4 kids it's getting harder and harder. I now have to get someone to take them and fetch them from school.
My my left hand still has hardly any strength I it and right leg feels like it's about to give way. I've also started having very sharp like stabbing pains in my head but mainly around where the cerebellum is. This is new
any feedback would be great - wishing you all well with your chiari journeys xx
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