Need advice

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

Moderator: pmaxwell

Need advice

Postby gncrzy3 » Tue Sep 18, 2012 9:14 pm

I have Sm, Bi, TCS, after my CCF they found I
Had a cm 0, 2 of my 3 kids have SM. I hate my pediatric
Neurologist. My daughter also has an an arachnoid cyst
In the posterior fossa of her brain. They say Sm is
Not congenital. HELLO!!!! Any way, I am super frustrated
Because no one seems to care as to why my kids have it!!
It took my Neuro sending me to dc to a specialist
To find I had BI. I can't tell you how many drs I saw
In Pittsburgh, and Cleveland clinic and they all scratched
There heads. I am frustrated because I feel like they
Should be looking for a reason.. And not just letting
Their spines deteriorate!! Did I mention that I had an MRI
When I was 16 when I first really started Gavin proble
That said I had ddd.. And no one cared. To make matters
Worse my oldest daughter had an MRI.. And was diagnosed
With ddd at 13!! I don't mknow what to do.. Obviously
There is more than meets the eye
Posts: 70
Joined: Mon Jun 25, 2007 11:23 pm
Location: western PA

Re: Need advice

Postby pmaxwell » Tue Sep 25, 2012 4:31 pm

unfortunately, I don't know what all the abbreviations are. I do know many things can cause a syrinx but they are not always visible. And there is a lot they do not know about SM. Obviously your family medical history is very complex. I would imagine only a hand full of doctors anywhere are going to be experienced in treating such complex issues. I know it is frustrating but you either fight or quit. You might be able to quit if it was just you but I know you will continue to fight for the children. And you can always post your frustration here.

Praying you can find someone who will not only listen, but search to find answers.

Together We Can...
Posts: 153
Joined: Mon Jan 31, 2011 2:20 pm

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