Very Confused and scared

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

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Very Confused and scared

Postby socmom » Sun Nov 08, 2009 9:28 am

My 10 dd has been complaining about back pain since 1/09, in July took her to a back dr (other daughter has mild scoliosis), he said 10 year olds should not have pain, he ordered a mri looking for possible stress fracture, when went in for appointment to go over results and omg....he said she has a syrinx maybe 2 and a possible tethered cord, he sent us right over to a Ped Neurosurgeon. He then told us he thinks it's a spinal cord malformation type 2, the only symptom she has is pain, let’s get a sono of kidneys and renal function and see you back in 6 months for a f/u MRI.
We get home the Dr's office calls says Dr does not want to wait he wants new MRI now, asked why? PA says needs to confirm things??? Dr is going to present her at a conference......WHAT?????
I call the back Dr in search of an answer..says he sw nuro and they need to confirm what this is...they are not sure it she has a scm2, a syrinx or a true double cord and he is presenting her at a confo looking for help in diagnosing & treatment. My husband and I are beside ourselves, we are going in 11/12 for new MRI and meeting w/Dr.
socmom
 
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Re: Very Confused and scared

Postby Becky1219 » Sun Nov 08, 2009 8:40 pm

Welcome, I hope the f/u MRI will show exactly what your dd's diagnosis is. It sounds like the docs are really working hard to figure things out and are willing to ask others for help. That in itself is a real blessing during this difficult time. Praying for your dd and family!
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
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Location: Indiana

Re: Very Confused and scared

Postby socmom » Sun Nov 08, 2009 10:31 pm

thank you very much for your reply and prayers, everyone says that it is good they are seeking more info, but it is soo frustrating not havign any answers. The Dr in nyc is suppose to be one the best in the area which scares me because if cant figure it out...it it jsut soo amazing to think that my dd has something this rare.
socmom
 
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Joined: Sun Nov 08, 2009 9:09 am


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