Kahli's MRI

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Kahli's MRI

Postby kahlismum » Sat Jun 16, 2007 5:59 am

Kahli had her MRI and saw NS last week. Good News is Syrinx is deflating, and shunt apears to be doing its job.

Bad news is she had a fall last week and they now found an increasing Kyphosis Angle at T9 where her shunt is. Not sure if it from her Surgery or her repeated falls.

She has also developed a partial paralysis of her right foot and falls alot when her knees just cant hold her, and due to muscle spasms in her back she has continual chest pain. now we have to see Orthopedics as well as NS.

I would love to hear from anyone else who has Kyphosis as a result of surgery if that is the cause.

Im feeling confused as i had never heard anything about this.
kahlismum
 

Postby mac » Sat Jun 16, 2007 10:29 am

Mum, I don't have an insight for you but wanted to say hi and welcome you here. How old is Kahli? This must all be so hard for you, as a Mom, watching your child with these difficulties and pain. My prayers are with you both.

blessings
mac
mac
 

Postby kahlismum » Sat Jun 16, 2007 4:37 pm

Kahli is 12, we are coming over from New Zealand for the ASAP conference. Her NS is interested in any information we can gather which is positive. She is also to have another MRI within 2 months as he now wants to find a cause for her syrinx, he is looking at a possible tethered cord, she has never been scanned down entire length of spine.
kahlismum
 

Postby Gracie Rose » Sat Jun 16, 2007 10:58 pm

Hi,

Welcome to the boards. I will be at the conference and so will lots of folks that can try and share with you. Has your little gal been assessed for EDS? Her knee and foot issues sound all too familiar. I have several children with ACM and EDS and they have severe joint pain. One of my sons falls due to knee stuff too. He also has a tethered spinal cord and that can cause the foot drop, leg pain etc.

I look forward to meeting you next month, to be able to connect with another Mum, going through this.

Good Luck to you,

Lisa in WA, USA
Gracie Rose
 
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Joined: Wed May 30, 2007 1:02 am


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