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Chiari 1 and large syrinx??

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lauren23261
lauren23261

Hey, 24 year old female. So the last few years I have had some random symptoms, numbness in two toes, huge head aches, numerous different pains, numb hands, numb arms and a load more. Each time I went to the doctors I was fobbed off with something different each time. I can Only carry my 2 year old for about thirty seconds without loosing strength. So about four months ago my face started to go numb and now it feels as it I've gone to the dentist and been numbed. Doctor sent me to have an MRI as he was suspecting MS but I've had the results and it's Chiari 1 malformation, 12mm toncillar herniation and a syrinx from C3-T12. My GP admitted she didn't know what it meant. I have read up what I can online but there isn't much information. My GP referred me to a neuro surgeon but does this mean I need surgery? Any advice or anything really will be massively appreciated. Thanks in advance

0 likes, 5 replies

5 Replies

  • b2wc97455
    b2wc97455 lauren23261

    Posted

    Hi lauren, I just wondering where do you live in the UK..I suffered really like you as a start..but then its got worse..I also was diagnosed with CM1..7mm..but I just ended up became house bound...I was glad that all my health care professionals in Dorset, despite they did not have a clue what CM1 is all about..but since I joined this site, Ann conroy Trust then Mayo Clinic and also research myself through Youtube..etc..and then referred back to my helath care professionals - they really wre trying to help..the most important thing I think is that you have to take incharge of your own health..when talking to the GP/Neurologist/NS...show your print out about what you have learned..express it to them how worry you are with your condition.. in UK..NICE..NHS..goal is to achieve the better standard of the patient QUALITY OF LIFE..so hoping the patients are able to go back to live a normal life///failing that you can complain to NHS whereever you are then bring the lawyer as well (if they do not treat you properly) ..make sure you like them to help you...trust them that they do in their power to help you achieving their goal as well (for your betterment - of the Q.O.L)..the most important as well, make sure you have 2nd opinion - what its mean is that you get another opinion from the NS..I personally suggested you to have the surgery, because even though each individual different, I can't see that medicine can help..as it is not a disease it is a technical (construction) problem..so.if you are suffering enough, do not leaVE IT TOO LONG......you do not want to be like me.. I left it too long, and I ended up damaging my nerve around neck, spine, ..and yo do not want that..luckily I quite have a strong willingness to be better..so I am now fully recovered..free of drugs..but discipline is very important, take some supplements such as magnesium, drink 2 ltrs water daily, change your life style..eat lots of fish (tuna will do) or cod liver oil. But get your gp then Neurologist to refer you to either Mr flint of QE Hospital in Brimingham, or the Walton Centre - Liverpool - they are fantastic...the sooner you decide and ask your helath care professional to arrange your decompression the BETTER...but 2 months after urgery you live like hell..BUT ITS WORTH IT

    • lauren23261
      lauren23261 b2wc97455

      Posted

      I am in Wales and I have been referred to a neurosurgeon in Cardiff. My GP admitted she didn't know anything about the condition. She even googled it in front of me .. that makes me a little terrified.

    • b2wc97455
      b2wc97455 lauren23261

      Posted

      WELL AT LEAST SHE IS HONEST.

      Could you not ask her that yo would like to have an opinion, since this is very rar condition, dont you think you should get the best shot..If I were you..I would ask the GP to refer me to Mr Flint..which is in Birmingham.. honestly..he is fantastic..I still think he is the best..just in case there is a complication..at least you know that he can handle just like that..why dont you call Ann Conroy Trst speak to the nurse there, to give you an idea the name of the NS in Cardiff do they know them..HONESTLY.. I was so pleased that I went to 2nd opinion and got Mr Flint..because I was so scared when reading lots of the stories about after decompression..but nto to worry..just look at you tube of mayo clinic about chiari..you will better..I am drug free now.. the problem is lots of successful chiarian operation, never came to the website again,..isntead of sharing their exprience and helping others... so THERE IS A LIGHT AT THE END OF THE TUNNEL

    • lauren23261
      lauren23261 b2wc97455

      Posted

      Thank you very much for the advice. It's nice to hear from someone who has been through it all

    • b2wc97455
      b2wc97455 lauren23261

      Posted

      Hi Lauren, its OK, just make sure you know what you are doing and get someone to accompany you to the gp or NS appointment..do not delay..it is important to get sorted it AS AP
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