Looking for new NS in KS

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

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Looking for new NS in KS

Postby cricketke » Sun Jan 10, 2010 1:03 am

We are looking for a new NS in KC area. We are wanting a second opinion for the NS at Children's mercy. He feels that no further CT's or MRI's need to be done EVER! My grandson had decomp. surg almost 3 yrs ago and had MRI 3 mos after surg and none since. He has a SM that goes from C3- T11. Decomp did decrease diameter of it, but not length. And who knows after 3 years what is going on. Anyway, do you know of any NS or CM specialist in KC area? He also has a VP shunt for hydrocephalus that has caused a great deal of scarring in area of shunt (or at least that is what NS said after surg). We would just feel better if we could get another doc for a second opinion on this. My grandson is having some mild symptoms, but has so many problems, it is hard to tell what is causing what.
Proud grandmother of 10 year old with scoliosis,
CM (5 cm) with decompression 2006,
SM (C4-T12),
VP Shunt, hydrocephalus,
hx of spinal meningitis at 2 mos old
Posts: 9
Joined: Thu May 29, 2008 12:03 am
Location: Leavenworth, Kansas

Re: Looking for new NS in KS

Postby tnajk » Sun Jan 10, 2010 9:59 am

I'm sorry I can't help you with a referral. Hopefully someone else will know someone. I just want to pop in and say I think you are doing the right thing by finding another NS. Will your insurance allow you to travel outside the state? NS's are such a rare breed it's sometimes necessary to travel in order to see a good one. Good luck!
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
Posts: 31
Joined: Wed Dec 09, 2009 11:36 pm

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