Update on my niece

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Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/30/2006 8:47 AM (GMT -7)   
Hi everyone, just popping back to let you lovely people on here know what is happening with my niece.  She has had an MRI scan on her spine to make sure that is ok because Arnold Chiari Malformation is linked to spina bifida.  Fortunately that scan is normal.  The consultant wrote to her school saying that she is well enough to attend but is not allowed to do games and must be escorted when going up and down the stairs.
 
Well up until now the school have been great but they are now starting to get rather concerned at the disruption the fainting fits are causing.  My niece goes to an all female school and is still fainting three to four times a day.  She also has a constant headache at the back of her head where the brain is "peeping through".  Even with prescription painkillers (diplofenac?), the pain is always there.
 
So.... next Tuesday my sister is taking my niece up to Great Ormond Street Hospital.  They are the specialists and I am hoping they will be able to give us more information and help my niece cope with everyday life more.  The consultant here seems to think she will grow out of this, but nothing is definite.  The only "cure" is surgery but this is not always successful and, because it is brain surgery, is obviously never entered into lightly.
 
I'll keep you posted.  Thanks. x
 
 

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 3/31/2006 12:28 PM (GMT -7)   
Thanks Mandi. x

Jan Marie
Veteran Member


Date Joined Sep 2005
Total Posts : 1663
   Posted 4/4/2006 2:44 PM (GMT -7)   
Am feeling rather shell shocked. I have just had a message that the specialists think my niece should have the brain surgery. I don't know any details as yet. This is scary stuff.

Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 4/5/2006 3:13 AM (GMT -7)   
Mandi - no there are no other treatments at all. The only solution is surgery because it is the bones which are malformed so the bones need reshaping to relieve the pressure on the brain. She will be having the surgery at Great Ormond Street Children's Hospital in London. She is on prescription painkillers for the headache and they are not helping at all. She is still passing out three or four times a day, so obviously this needs to be done. The surgery is not entered into lightly - but it has a 80 to 90% success rate.

Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 4/5/2006 3:31 AM (GMT -7)   
Sis ........Know I am thinking ,praying and keeping you and your niece and the whole family in my heart........God Bless You All .......Love ya sis ......Lyn
 
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Jan Marie
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Date Joined Sep 2005
Total Posts : 1663
   Posted 4/5/2006 9:30 AM (GMT -7)   
Not yet, but it is likely to be soon-ish. Thank you for your support. It means so much.

Jan Marie
Veteran Member


Date Joined Sep 2005
Total Posts : 1663
   Posted 4/6/2006 3:18 AM (GMT -7)   
Mandi - will do!

Jennifer - no problem at all. Thanks for the hugs. I'm feeling a lot calmer and more positive about it all now.

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 5/10/2006 7:39 AM (GMT -7)   
I don't look on here for a day or so and look what I miss. Prayers are with you and your neice. You have to be brave, cause she is gonna it to be. One day at a time. Please keep us informed. I feel led to pray on her surgery date and time. So, please let us know. Kimmy (my daughter with seizures) says she will be praying too. HUGGS
 
Beth B. in TN
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