Urology/Orthopedics Questions

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

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Urology/Orthopedics Questions

Postby itsme102376 » Wed Mar 17, 2010 10:22 pm

Hello,

My 5 year old son Matthew has been diagnosed with Chiari 1 10 to 11mm to C1, syringomyelia/hydromeylia from the cervical to lumbar spine, and levoscoliosis 24 degrees. He is scheduled for posterior fossa decompression, with duraplasty and possible laminectomy on April 14th.

Next week we will be seeing a pediatric orthopedist and urologist in preparation for the upcoming surgery. We will be seeing the orthopedist for the scoliosis; and we will be seeing the urologist for occassional bed wetting that Matthew has recently started.

What are some questions that I should ask these physicians?

For the orthopedists I have come up with the following: Are braces effective with neurologic scoliosis? What type of brace would be recommended if one is? How many hours a day does the brace have to be worn? How long do we wait after decompression surgery to see the orthopedist? How often should x rays be done to evaluate if the Cobb angle has changed.

For the Urologist: Has any damage been done to the bladder/kidneys in regards to the syringomyelia/hydromyelia? If there is damage is it reversible and can we expect it to improve after decompression surgery? Will any type of sedation be used for the urodynamic studies such as Versed etc? as I have read that does not have an effect on the studies?

What else should I be asking these docs? Any advice is greatly appreciated! Thanks!

Crystal
itsme102376
 
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Re: Urology/Orthopedics Questions

Postby Janice » Wed Mar 17, 2010 11:27 pm

Hi Crystal,

I'm so sorry to hear your young son is having to deal w/these debilitating conditions. I can't begin to imagine how difficult this is for the entire family. As for Matthew, my heart goes out to him, as well as my prayers.

As for the scoliosis, I can only think to ask if there are any other treatment options, besides bracing? Is there anything that occurs in conjunction with, or after, the bracing?

As for Urology, I would want to know if there's a possibility that Matthew might have a neurogenic bladder, which could be an indication of Tethered Cord Syndrome/TCS? Has Matthew had a lumbar MRI? This is another way to check for TCS. Depending on the surgeon, having TCS w/CM, can result in performing TCS release prior decompression. Just something to check on because the urinary symptoms could very well be from TCS, rather than SM.

That's all I can think of. I wish Matthew all the best going forward, and pray he's able to manage whatever symptoms comes his way.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Re: Urology/Orthopedics Questions

Postby itsme102376 » Thu Mar 18, 2010 10:03 am

Thank you for the reply. We do know for a fact that he does NOT have a tethered cord. Which we are very thankful for. I will add your questions to my list for the physicians. Thank you!

Crystal
itsme102376
 
Posts: 13
Joined: Wed Mar 17, 2010 9:43 pm


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