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Chiari malformation type 1

Posted , 7 users are following.

jehan_91998
jehan_91998

Does anyone knows or recommend any clinic or hospital in the whole world who can treat chiari as my 26 years old daughter is getting worse she is in bed unable to eat bcoz of the sever pain unable even to hold a pen bcoz of the weakness in the hands arms muscles heaviness in both eyes and she already has lost her visual fields from the part of her right eye. She has no balance to stand feels dizzy her weight is 35kg

Any one can help please??

Thanks

Jehan

0 likes, 11 replies

11 Replies

  • Searon26
    Searon26 jehan_91998

    Posted

    Where do you live Jehan?

    I had my decompression surgery in July 2016. Hospital UCLH Queen Sq London, neurosurgeon was Mr Kitchen, him and his team were amazing.

    I feel so much better now, I'm almost leading a normal life.

    Wish you all best in finding a suitable hospital & surgeon.

    • jehan_91998
      jehan_91998 Searon26

      Posted

      Thank you season

      I'm from Bahrain. Will try to contact the hospital you gave me.

      Did you faced any complications during after the surgery

      Best wishes

      Jehan

    • Searon26
      Searon26 jehan_91998

      Posted

      Hi Jehan

      Had a small leak following surgery, still leaking a small amount of CSF fluid.

      Other then that, all is well. Not all of my symptoms disappeared follow my operation however, as time passes I'm generally getting much better.

      Good luck

  • Jenaa
    Jenaa jehan_91998

    Posted

    Hi, I'm so sorry to hear what your daughter is going through.

    Mr Flint at Queen Elizabeth hospital in Birmingham, UK is the leading chiari neurosurgeon in the UK.

    Where are you from?

    If you're daughter's weight is so low chances are she's not fit for surgery due to her severe malnutrition state. I appreciate she's unable to eat, so have you explored artificial feeding options?

    Chiari is strongly associated with tiredness and exhaustion and with her weight being this low would also be contributing to more weakness and tiredness.

    Try to address her nutritional status in the meantime while you're finding a team to help her. (I'm a Dietitian, and would recommend you involve the dietetics team wherever you leave) Being severely underwriting and malnourished has far severe consequences than chiari.

    I hope this helps

    • jehan_91998
      jehan_91998 Jenaa

      Posted

      Thank you Jehan for your reply

      I was in uk until last October but couldn't get any appointment with Mr Flint but my daughter's condition getting much more worse than before. I'm really worried and don't know how to get in touch with Mr Flint

      I live in Bahrain.

      Please let me know if you know any chiari malformation clinics in the world

      Best wishes

      Jehan

    • Jenaa
      Jenaa jehan_91998

      Posted

      Mr Flint has a very long waiting list unfortunately. I was referred to him in August and my appointment would have been in April 2017. But I've been calling to see if there's cancelled appointments and have managed to get one for next week.

      If you search for "Mr Flint neuorosurgeon" on Google, the last link on the first page brings up his work email address! That might be a way of getting in touch with him.

    • jehan_91998
      jehan_91998 Jenaa

      Posted

      Thank you so much jenaa

      Wish you all the good luck for your treatment

      Best wishes

    • jehan_91998
      jehan_91998 yeltzer

      Posted

      I have tried it as well but they told me they don't have any appointments

      Thanks Best wishes

  • Mayyar17
    Mayyar17 jehan_91998

    Posted

    Hi i hope your doughter been better now , can you tell me if you take your daughter to a neurosergeon in bahrain and what his name coze i need a surgery and im from bahrain and i dont know where to go 
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