2.5 yr. old diagnosed with large syrinx!

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

Moderator: pmaxwell

2.5 yr. old diagnosed with large syrinx!

Postby jsmommy » Wed Sep 05, 2007 7:58 pm

Hi! I am new to this site b/c like most of you i just found out my son had this thing and started researching it. He was diagnosed with osteomyelitits of the pelvic bone 6 months ago and then when it cleared up he still could not walk and they could not figure out why he used to :cry: be able to walk and now he could not. They MRI'd his pelvic bone 4 times and then finally the doctor listened to me and asked to MRI his spine and brain as well. We just got the diagnosis yesterday and I go see a neurosurgeon tomorrow morning. I am so overwhelmed and nervous. I dont really know what to think at this point or what they will tell me. I know that the cyst goes from the middle of his spinal cord all the way down to the bottom. Does any one else have anything like this as big or any good advice for me. Im just a worn out mom that wants her sons pain to go away like the rest of you. Im so glad I found this site and hope to get to know some people on here. Does anyone live in Texas? Are there any good docs in Texas for this? Thank you!
Lauren
jsmommy
 

Postby brianfsmom » Thu Sep 06, 2007 8:34 am

Hi Lauren,

Did they say what they think has caused the syrinx? Could it be in any way related to the pelvic bone issues? I am not familiar with that condition. Sometimes a syrinx is caused by trauma, but usually by a chiari malformation. Did they say anything about this? if they say he does not have one, get a second opinion. Especially in a young child, a chiari malformation may not be apparent at first glance on an MRI.

I'm not from Texas but I know there are others who are. One of the Texas doctors even put a chiari surgery online for all to see. The link to that is posted on here somewhere; I think that doctor was in Houston, it was 2-3 years ago.

Also, if there is no chiari, you may have to narrow your search for a specialist even more. Depending on how willing you are to travel, there will be lots of suggestions, but an idiopathic syrinx seems to require a unique kind of expertise.

Good luck! Take deep breaths. I know that is easier said than done.
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 6 guests

cron