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Little update type 2 chiari

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mrsmurphy31
mrsmurphy31

hi all

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

0 likes, 5 replies

5 Replies

  • b2wc97455
    b2wc97455 mrsmurphy31

    Posted

    Hi there, I am glad to hear you finally going to be looked after by Mr FLINT, he is fantastic..it is worthwhile waiting...hope you can bee seen and operated by him as well..and won't be long..I have the same as you even though as far as my ct/scan/mri shown no hydro/sychrin. I am still on their waiting list, but I my right hands and right legs as not as good as my left, is getting better now..unsure ..why..perhaps due to the the walking and physio. plenty waters..and some supplements I takes..unsure..also the diets my neurologists advice me to do..so i JUST WAITING..please keep us informed..hopefully..we would be in the same time for the op...
    • mrsmurphy31
      mrsmurphy31 b2wc97455

      Posted

      Hiya. Yes was so pleased to get in with him. Seems as he specialises in the csf and mines getting pretty bad his the one to see! I have a Neuro appointment tomorrow but that's with the same man who said I was going through a depressive episode so not holding out much hope lol. Hoping it's not to long but will see what Flint says. Seems everything is getting worse by the day now with new things developing also. So sooner rather than later would be good!! Xx
    • b2wc97455
      b2wc97455 mrsmurphy31

      Posted

      Can you not ask your neurologist to expedite to see Graham sooner as your condition get worse
    • mrsmurphy31
      mrsmurphy31 b2wc97455

      Posted

      Haha. Well I saw my neurologist the other day who procedded to tell me that regardless of the chiari and hydrocephalus etc most of the symptoms aren't chiari and it's all stress. How I didn't hit the man I do not know - certainly won't be seeing him again and have told the doctors i want nothing else to do with him!
    • b2wc97455
      b2wc97455 mrsmurphy31

      Posted

      Well, perhaps it might be idea for you to make appointment to see your gp, asking your gp to expedite you to get seeing mr Flint as sson as poswsible , explaining it to him/her how your condition getting worse, express your situation, you can't stand this pain..try to get your gp to as Mr Flint to advice any other meedicaiton to give while waiting for his appointment this instant Mr FLINT new how desperar you are, otherwise how do they know how painful you are? well I wish you GOOD LUCK..but be assertive when it come to your HEALTH..its not asthma..you know?
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