2 yr old just diagnosed with CM, SM & Hydrocephalus

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

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2 yr old just diagnosed with CM, SM & Hydrocephalus

Postby joshua'smom » Sat Sep 08, 2007 5:33 pm

Our two year old little boy was just diagnosed with CM, SM and hydrocephalus. I was writing to see if anyone else might have been given all three of these diagnoses. Also, we have two different opinions from two different Pediatric Neurosurgeons. One doctor is recommended an ETV (endoscopic third ventriculostomy) in his brain to help with the hydrocephalus and he also feels it will help with SM. Has anyone ever been offered this surgery first? He says there is a chance we will have to have the decompression surgery later as well. Our second opinion suggested the decompression surgery first. We are in a total state of confusion. We are looking right now at trying find a third doctor who will evaluate our case and help guide us in the right direction. We have seen specialists in Alabama and Georgia, but are willing to travel anywhere. We would appreciate advise from anyone who might have a similar or the same situation and diagnoses.
joshua'smom
 

Postby angie7 » Tue Sep 11, 2007 12:03 pm

I would find a CM/SM specialist and go with their opinion. There is TCI in New York, Dr Oro in Colorado, Dr Frim in Chicago, Dr Menezes in Iowa, Dr Benzel in Ohio...those are all I can think of off the top of my head. On the main page there is a medical advisory board that lists all the doctors and their locations.

In my opinion, I am not a doctor just someone who has lived with CM and SM, depending on how large the herniation is from his CM, CM could be causing the hydrocephalus so a decompression would be in order.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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etv

Postby Sara » Thu Sep 20, 2007 4:44 pm

Hi- often times in cases where hydro is present they will recomend treating that first. It could be the cause of his chiari- the brain is weighed down with the fluid. Sometimes the chiari resolves as a result of treating the hydro.

As for the ETV instead of a shunt, my daughter Holly just had the ETV done this summer. It failed. It does have a high failure rate, but the thought of living without a shunt is promising and many feel it is worth a shot. The doctor that wants to treat the hydro first- did he offer you the shunt option as well, or just the ETV? Is his goal to try an ETV or to treat the hydro?

You might try Dr Jerry Oakes in Alabama. He specializes in all these disorders. In cases where you are getting various opinion, and all of the specialist are equally qualified, you might try emailing some other specialist and asking their opinion.

You can read about my daughters adventure with ETV on her caring bridge site:
www.caringbridge.org/visit/hopeandholly

Sara
Holly's mom
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Postby powerlineman » Tue Oct 30, 2007 4:43 am

Dr. Thomas Staner
Hugh Daniel Drive
Birmingham, AL.

Also goes to Oxford.

www.brainspine.com
SM only (C2-T1, T10-T12)-Cervical Post Operative Radiculopathy-Degenerative Disc Disease-Anxiety-Depression-Chronic Fatigue-Osteoarthritis-Bulging Discs (T5-T7)-Sarcoidosis-Spina Bifida
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