Chiari decompression video

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

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Chiari decompression video

Postby memom » Tue Nov 30, 2010 9:23 pm

We are ready to share our experience at Children's National Hospital with everyone. Recently, a short video about our experience with Chiari Malformation surgery at CNMC was made. It features my daughter, MaryEmma, myself and Dr. Robert Keating talking about research and the type of surgery they are performing at CNMC in Washington D.C.

We are pleased with the video. Our only concern is that the ending makes it seem like everything is okay with MaryEmma and it is not. As everyone knows, this is just a treatment, not a cure. Although her headaches and vision are greatly improved, other symptoms remain. We believe MaryEmma's current problems are related to her syrinx. The good news is that it is collapsing ever so slowly. The bad news is she still suffers in pain.

We travel from Florida to Washington just to see Dr. Keating and the wonderful staff at CNMC. Please go to CNMC.org and search "Dr. Robert Keating" once his page comes up go to "In the News" and you can watch a short video about our experience at CNMC.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: Chiari decompression video

Postby lttutrow » Tue Nov 30, 2010 9:38 pm

Again, thanks for posting and I've added to my fb page! People are asking where this hospital is and who is Dr. Keating?!? LOL I've passed along that you've continued to get great care for MaryEmma with him :)!
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Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: Chiari decompression video

Postby memom » Wed Dec 01, 2010 9:01 am

Thanks Lori. I will also mention that Dr. Keating does have a great bedside manner. His has a great sense of humor - it makes things less stressful. The only negative is that a few months ago he became president of medical staff for entire hospital and now his time is even more in demand!

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm


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