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Teethered Chord

jlhogan22
jlhogan22 Member Posts: 1 Listener
edited October 13 in Rare, invisible, and undiagnosed conditions
I joined this forum seeing that there were some posts in regards to their childs tethered chord. My daughter is now 5 years old and was diagnosed with a tethered chord about 1 year ago.  She has a deep sacral dimple, which lead us to get an MRI and was then diagnosed with a tethered chord.  we have been seeing a Specialist and going to Lurie Children's in Chicago for yearly testing.  She struggles with constipation and has had 3 UTI's in the past 3 years, other than that she's great.  I am wondering if anyone knows of any other Specialist in the Chicaogland area outside of Lurie Children's that they would recommend?  We are looking for another resource to help with the Uro test she needs with the cath, because I am not happy with how Lurie's does it.  They want to put her under General Anesthesia in one location, then wake and have us transport her to the other location with Cath in to conduct urine test.  That is not going to work, she will freak out.  Need to do this all in one location.  Any insight or specialist recommendations would be much appreciated!
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Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,612 Disability Gamechanger
    Hi @jlhogan22 & welcome to the community.

    I'm sorry your little girl is going through so much.  Has surgery been mentioned to free her tethered cord, & would you consider going to New York? I know a neurosurgeon there who treats this & a related condition (which affects our family). As far as conditions in which tethered cord can co-exist go, he is a world-renowned expert in this field, having pioneered techniques to enable more effective surgery, as well as minimally invasive surgery.

    About 2 years ago he had operated on over 300 patients with a tethered cord. Please let me know if you would like to know more.
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  • April2018mom
    April2018mom Posts: 2,869 Member
    jlhogan22 said:
    I joined this forum seeing that there were some posts in regards to their childs tethered chord. My daughter is now 5 years old and was diagnosed with a tethered chord about 1 year ago.  She has a deep sacral dimple, which lead us to get an MRI and was then diagnosed with a tethered chord.  we have been seeing a Specialist and going to Lurie Children's in Chicago for yearly testing.  She struggles with constipation and has had 3 UTI's in the past 3 years, other than that she's great.  I am wondering if anyone knows of any other Specialist in the Chicaogland area outside of Lurie Children's that they would recommend?  We are looking for another resource to help with the Uro test she needs with the cath, because I am not happy with how Lurie's does it.  They want to put her under General Anesthesia in one location, then wake and have us transport her to the other location with Cath in to conduct urine test.  That is not going to work, she will freak out.  Need to do this all in one location.  Any insight or specialist recommendations would be much appreciated!
    Does she have spina bifida by any chance? You could always change hospitals if you are not being respected by the team of doctors. https://www.usa.gov/doctors#item-35777
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  • Adrian_Scope
    Adrian_Scope Posts: 8,098

    Scope community team
    Hi @jlhogan22. How are you getting on? Did you manage to find another specialist for your daughter? 
    Community Manager
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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