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1 year old diagnosed with Syringomyelia

Hi.  My 1 year old baby boy was just diagnosed with a significant syrinx in his thoracic spine.  They don't believe he has Chiari and think he possibly has a tumor.  He is going in for another full MRI.  Any pediatric recommendations that have had huge success with SM?  Any other advice? Questions to ask, anything? I am overwhelmed and can't believe this is happening to my sweet boy.
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I would suggest looking into and researching Drs the best that you can so you have a well informed and experienced Dr....a big name hospital is not always the best way to go, look at the Dr him/herself...to see how much they know.

Many Drs dismiss Chiari so, you will want to get copies of ALL tests and the reports so you can easily send copies off to other Drs.When reporting to have testing done, request copies at that time...paperwork to send the report is often necessary and they will give you a copy of the disk of the MRI or what ever test you have done b4 you leave.

Not knowing where you are located I have no idea where to begin, we do have a list of Drs that is meant as a tool in researching Drs as it is not a referral nor an endorsement for those listed on it....

Make sure to ask if they are familiar with Chiari, and ALL the related conditions...syringomyelia, ICP, POTS, tethered cord, sleep apnea, ehlers-danlos, disk issues.....

Also ask if they treat children as not all Chiari specialists do....

You will want to know if this is from an injury (birth related) or congenital....or what the source is...I know you have more tests for your son so they may help you get those answers.

Know that you and your DS are not alone....
Avatar universal
Thank you.  We are in Southern California.  Of course I would like to have someone fantastic local but if there is a doctor that is the best in treating SM, we will travel.
620923 tn?1452915648
COMMUNITY LEADER

  I know we do not have a lot on the list for CA and a few that are on are with the Kaiser network.....not sure if they treat children or not....

There area few in TX you may want to check out....

And I know there is a specialist in Orlando, FL that treats kids....just not sure how far you want to go and which one may work with your INS.....

Here is a link to the Health Pages where you will find info and a list of Drs for you to use to research them...I'd advise seeing a few and then going with your gut....but you will have to educate yourself on Syringomyelia and related conditions so you can help choose the right Dr for your child.

http://www.medhelp.org/health_pages/list?cid=186
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