Chiari malformation type 1
Posted , 7 users are following.
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
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 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 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
jehan_91998 Searon26
Posted
Hope you get better dear
Best wishes
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 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 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 Jenaa
Posted
Wish you all the good luck for your treatment
Best wishes
yeltzer jehan_91998
Posted
Mr. Flint doesn't do private work only NHS I believe he my be able help you. Or you could try the Ann Conroy trust
www.annconroytrust.org/.
jehan_91998 yeltzer
Posted
I have tried it as well but they told me they don't have any appointments
Thanks Best wishes
Mayyar17 jehan_91998
Posted