need advice

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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need advice

Postby lcolangelo » Mon Feb 04, 2013 3:05 pm

I have a 14 year old who has had 4 surgeries for chiari malformation--- she continues to re-grow bone. She has had a SEVERE headache for 23 days now-- completely unable to do anything-- unless we give her loritab-- which makes her only partially functional-- headaches began after bout of bronchitis with constant couging. She also started having swallowing issues--- food/drink are coming out of her nose-- and she has bad leg pain. Our nsg is out of state-- finally got mri---according to report she has csf flow anterior to the brain-- but none posterior-- I thought we had our answer-- but after waiting a whole week for nsg to get back to us-- he said he thinks the scan is OK-- does not even want to see her. Now I have no idea what to do-- as i am sitting here listening to her sob in pain-- and dont want her taking narcotics-- any advice???? Our nsg is a well known chiari "expert" but i just cant believe there isnt something wrong... and ideas????
lcolangelo
 
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Re: need advice

Postby lttutrow » Tue Feb 19, 2013 11:38 am

So sorry that she isn't doing well! I have a 14 son and 16 year old daughter who have had decompression and shunt surgeries. Did the neurosurgeon give you any ideas why they thought she was having such pain if the restricted csf flow isn't the cause? Is she followed by Neurology?
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Re: need advice

Postby lcolangelo » Thu Feb 21, 2013 9:22 am

Hi, we have seen neurology and they feel it's a neurosurgical issue-- we even went for a second opinion to a different neurosurgeon -- he want s us to see our neurosurgeon--we are at a loss-- I've contacted our neurosurgeon and asked if he can see her anyway-- he is out of state-- waiting to hear what he says. In the meantime her headache is constant and horrible-- only controlled by narcotics-- we are at a loss
lcolangelo
 
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Re: need advice

Postby gunflint » Thu Feb 21, 2013 6:01 pm

Icoangelo,
I meant to write sooner but I got distracted. What I wanted to say was that I wish there was some good advice that I could give you. To be perfectly honest when parents write in about their children I get somewhat intimidated. I'm very thankful that I'm the one in our family that was diagnosed. I'm not at all sure how well I could stand up and face this if it were one of my kids. I'm 56 and have been called many names but humble isn't one of them. I can make my feelings known and I can get fairly aggressive if I think aggressiveness is called for. The children come to this battle with much less life experience and completely dependent on the adults in their lives to help. I just wanted to say that you are not alone and don't get too concerned if you don't get answers to your inquiries here they are very hard issues with few easy and quick answers. I try to help the people here any way I can but I have very little to offer a parent. Hang in there. Everybody here cares.
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