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Hello All

Postby chinamarie » Tue May 17, 2011 12:25 pm

I wanted to take some time and introduce myself. I am Jenn, mom to 3 wonderful boys.  My middle guy M was diagnosed with CM/SM when he was 6 (he is 8 now) in 2008. We noticed because he had a very profound curvature in his back. We took him to his pediatric that referred us to a pediatric orthopedist. We saw him in the middle of November, 2008. The orthopedist ordered an MRI since it wasn’t very common to see a young male child with scoliosis. The MRI showed the Chiari Malformation with Syringomyelia. We, like many people who don’t live and breathe CM/SM had no idea what it was or what it meant.

We were referred to a wonderful pediatric neurologist. We had our first meeting with him in the beginning of February 2009. He explained to us a bit about what the MRI findings were and as we sat there he told us that surgery needed to be scheduled. We were thinking down the road…well down the road was February 18th. It totally threw us for a loop. He had the first decompression surgery done, the laminectomy. The removed the small portion on the base of his skull and a portion of the C1 vertebra.

We were very hopeful that this would be it. But the following MRI’s weren’t as hopeful as the doctors hoped they would be. He was scheduled for the second decompression surgery, the duraplasty exactly 18 months down the road on August 18, 2010.

Our most recent MRI was in March and things looked good. We are waiting for the next follow up which will be in September. He also had a milestone this last go-round. He was able to go through the MRI without sedation. That was a big YAY for us!

I am still trying to grasp my head around the world and lives of people with CM/SM. I am really glad I found this place and I hope I will be able to learn a lot from everyone. I will also contribute as much as I can. I am by NO means an expert but I have learned quite a bit during this journey.

So that’s our story.  I am looking forward to getting to know you all.

Jenn 
Jenn mom to three beautiful boys.
chinamarie
 
Posts: 5
Joined: Mon May 16, 2011 10:26 am

Re: Hello All

Postby kiminfla » Wed May 18, 2011 4:48 am

Jenn, Welcome to the board...sorry you have reason to be here but you'll soon find that the wonderful group of people here are really caring and supportive and will help you as we're all in this together. I pray your son's surgery will prove to be a huge step forward on his path of wellness! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Re: Hello All

Postby chinamarie » Wed May 18, 2011 12:44 pm

kiminfla wrote:Jenn, Welcome to the board...sorry you have reason to be here but you'll soon find that the wonderful group of people here are really caring and supportive and will help you as we're all in this together. I pray your son's surgery will prove to be a huge step forward on his path of wellness! Be blessed, Kim


Thank you so much Kim! :) I appreciate it!
Jenn mom to three beautiful boys.
chinamarie
 
Posts: 5
Joined: Mon May 16, 2011 10:26 am

Re: Hello All

Postby karenb » Wed May 18, 2011 6:28 pm

Kim,

Welcome to the club nobody wants to be part of! :lol:

Seriously, though, this group is great for support and stuff. You might want to check out the main ASAP website as well (http://www.asap.org). They have some really helpful resources.

Also, you're just in time for the annual medical conference - see http://www.asap.org/index.php/get-involved/conference/. The parents' agenda is already up on the website (click the "Main Agenda" link), but the youth agenda (aka the "Kids for a Cure Club") is still a work in progress.

I went to the conference in 2008. The general consensus, from the people I met, was that it was a great learning and networking experience for parents and patients. The kids who came seemed to have a great time with lots of activities and stuff while their parents were sitting through lectures! Several of the teenagers mentioned that they especially liked it because they were no longer the only person they knew with CM/SM.

Again, welcome!

Karen
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Location: Las Cruces, NM

Re: Hello All

Postby chinamarie » Tue May 24, 2011 10:37 am

Thanks Karen. :)
Jenn mom to three beautiful boys.
chinamarie
 
Posts: 5
Joined: Mon May 16, 2011 10:26 am


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