Any Chiari sufferers also have Ehlers Danlos Syndrome???

My daughter has had aeseptic meningitis since her decomp surgery in Aug. '09. She has a bulge at the back of her head, which is a CSF leak. Her NS thinks she is having an allergic reaction to either the sutures or the bovine pericardium dura patch, so he has put her on steroids for the 2nd time. She has fevers, extreme pain in her neck, back, hips, and knees. She has terrible vision in her left eye, 20/40 is the best correction they can get so she wears one contact. She has had two EKG's and echocardiograms because of a high pulse rate (140) and they suspected enlargement of one side of her heart, but the pediatric cardiologist cleared her. Noone knows why her pulse rate has been so high. All these symptoms and she feels so terrible that she can't go to school. She will fail the 4th grade if we don't get some answers soon. I've heard that some people with Chiari I malformations also have EDS, but this is new to me. Anyone out there that can help? We live in SD, so I don't even know where to start finding a doc who knows something about this.

[n40066]

i am so sorry your daughter is in so much pain and having so many problems!  selma also has eds and i am certain she will be on shortly.  having it herself, she would be the best one to talk to.

best wishes to your daughter and your family and i hope things get worked out soon and that she will be able to find relief from all her pain.

elizabeth

[selmaS]

Hi....yes I also have EDS and was dx'd by my NS at my preop appointment.And bcuz of this dx I was told they had to use my own skin as a patch and could not use staples or stitches.....they used steri strips and glue to close my incision....which still had a minute opening into my 5th month post op.......but according to my  PCP everything looks good. And I was put on antibiotics to help heal quicker...is ur DD on antibiotics?

Those of us with EDS tend to heal slower.....and I would consider using a home school program for ur DD.....this way she can work when she feels up to it which may not be reg school hours.

How long since her surgery?

There is a Health Page on EDS here on MedHelp. DO u know which type she has? I have the hypermobility type and just reading the description I would have sworn that I could not have it, but the nurse at TCI showed me the diff abilities my joints have which I thought was "normal" which it is not.

If u have ne other questions I am here.

"selma"

I know kids bounce back faster than adults, but the EDS will slow that down a bit.