NS Appt. Help need Opinions!!

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

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NS Appt. Help need Opinions!!

Postby kellycotton1432 » Tue Mar 16, 2010 7:04 pm

So we saw the NS yesterday. (Dr. Trumble in Orlando) He told us that my 12yr dd's syrinx is a normal find and is too small to be causing any of my daughters symptoms. It is 2mm at the widest and is from c4-c7. He said they will look at it in a year. But he feels that we don't need a NS and we need to go back to the "drawing board" for her symptoms, which are severe daily headaches, loss of sensation in left hand and both lower legs, & breathing problems (seems like she has asthma, but doesn't). We've had her eyes checked (20/20 & normal), and seen a Pulmonologist as well... I don't know if I should accept this or try to send her scans to Miami to a known sm expert. What do you guys think?

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Re: NS Appt. Help need Opinions!!

Postby Catherine » Tue Mar 16, 2010 7:38 pm

It doesn't hurt anything to get a second opinion. Good luck.

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Re: NS Appt. Help need Opinions!!

Postby memom » Tue Mar 16, 2010 8:51 pm

I was told the same thing by our first NS in Jacksonville. He was dead wrong! Get a second opinion from a specialist with CM and SM. Do not wait - you will have to travel. We see Dr. Robert Keating at Children's National in Washington D.C. I know Dr. Green in Miami is highly recommended and there is Dr. Jerry Oates in Alabama. I believe there are several specialists at Duke and John Hopkins as well.- I mention these as they are nearby. Do not give up searching! All of those symptoms CAN be from CM and SM.

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: NS Appt. Help need Opinions!!

Postby Sara » Sun Mar 21, 2010 3:57 pm

Did he find any possible cause for the syrnix? Chiari? Have her eyes been checked by a neuro-opth for papilledema (swelling of the optic nerves) or did she just have a visual exam? The papilledema is what you need to rule out, it could indicate raised intracranial pressure which cause severe headaches (particularly in the morning) nausea, vomiting and visual disturbances. the syrinx could be an unrelated finding, but it is always wise to get a second opinion, especially in the presence of such severe symptoms. Can you leave Fl? If not you might try Miami- Bhatia or Ragheb in Miami. Some small syrinxes are not really syrinxes but dilation of the central canal, and these don't expand or cause problems. If this is what she ahs then there very well could be something else going on that you don't want to miss. But a second opinion should confirm this.
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