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Tethered Cord (TC)

April2018momApril2018mom Posts: 706Member Pioneering
Oliver had a routine urodynamics done last Tuesday at the hospital. I've got a email with the results today, and the words that really do stand out are in italics, his cord could be tethered. I've not noticed any change in leg function so this piece of surprising news has rocked things up for sure. Any tips and experience is appreciated. Our next appointment is not until later this year- should I ask to have it bumped up or not? 
He has had already undergone 2 major operations. He just unfortunately underwent another surgery a few weeks ago for his clubbed feet. In some ways I'm grateful he still does not have any sign of hydrocephalus- one less issue for us to cope with. Desperately still hoping this is a false alarm. We are meeting with the uro on Wednesday. 

Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @April2018mom apologies for the late reply. How did it go? Please keep us updated. ;)
  • Sam_ScopeSam_Scope Posts: 7,348Administrator Scope community team
    Hi @April2018mom
    Thanks for sharing, how are things going now?
    Sorry we missed your post but I hope you will update us again soon.
    Scope
    Senior online community officer
  • loopy12aloopy12a Posts: 10Member Listener
    I also have tethered cord and problems with bladder and bowel function. I can't offer advice I'm afraid as I don't know the details but I would see if you can speak to someone regarding the results so you get a clearer.picture of what's going on.
  • April2018momApril2018mom Posts: 706Member Pioneering
    Update-

    After weeks of observation and prayers I finally got in contact with his medical team.
    Some of my questions were answered others remain. We have another urodynamics test scheduled for Monday that will hopefully give us more information.
    His leg function which wasn’t great to start with has declined since my last update. We went back to see the doctor earlier this month. It was not good news.
    Prayers and thoughts will be appreciated as well. I’ll try to keep it updated if I can. 
  • Ami2301Ami2301 Posts: 4,987Community champion Disability Gamechanger
    Thinking of you all @April2018mom ;
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • debbiedo49debbiedo49 Posts: 2,722Member Disability Gamechanger
    Thinking of you x


    I am a fibrowarrior!
  • Adrian_ScopeAdrian_Scope Posts: 1,903Administrator Scope community team
    Thanks for updating us @April2018mom, we'll be keeping Oliver and you in our thoughts. Please let us know how things progress and if we can help in any way.
    Senior Community Officer
    Scope
  • April2018momApril2018mom Posts: 706Member Pioneering
    Thanks all. We won’t know anything until Monday so I have decided to distract myself with a unscheduled trip to Guildford tomorrow to visit a art gallery there. I called the doctor to schedule a urodynamics test for Monday of next week. After the results come back we’ll make a decision regarding the operation. 
  • April2018momApril2018mom Posts: 706Member Pioneering
    Wish us luck the test is tomorrow morning first thing. 
  • Adrian_ScopeAdrian_Scope Posts: 1,903Administrator Scope community team
    Best of luck today @April2018mom! :)
    Senior Community Officer
    Scope
  • April2018momApril2018mom Posts: 706Member Pioneering
    Thank you. I got home from the hospital a hour ago. Before lunch they did a urodynamics test now it’s a waiting game for the results to come back and then make a decision. We have a appointment at the end of next week to discuss results and make a decision. Hopefully we will learn more then. Keep us in your prayers. 
  • April2018momApril2018mom Posts: 706Member Pioneering
    UPDATE 2

    We are booked to see the specialist tomorrow at the hospital. I have a few questions to ask. They want to go over the results of the tests and then make a decision on surgery for little man. We will probably meet with his neurosurgeon as well as the urologist and orthopaedic. Will update if I hear from them. Tomorrow is a big day of unexpected appointments for us. 
  • Adrian_ScopeAdrian_Scope Posts: 1,903Administrator Scope community team
    Hi @April2018mom, best of luck to you and the little man today. Do let us know how it all goes.
    Senior Community Officer
    Scope
  • April2018momApril2018mom Posts: 706Member Pioneering
    Update 3

    We were at the hospital all day yesterday. They went over the results of the tests and a plan of action was agreed upon. The operation is scheduled for next month. We also had a clinic appointment straight afterwards as well. 
    The results were not good. His bladder function is definitely declining. I notice it at night just before bedtime. His lesion level is at the top of the spine but I have not seen any decline in leg movement yet which is one less thing to discuss. It was a full day of meetings with all of his doctors. Most of my questions were answered.
    Even the physical therapist seemed to be concerned. 
  • WaylayWaylay Posts: 827Member Pioneering
    Good luck @April2018mom ! My little brother had a tethered cord when he was born. It wasn't diagnosed until he was 9, so he has a lot of permanent damage. He was born in 1978, though, so I'm sure things are WAY better now!
  • Adrian_ScopeAdrian_Scope Posts: 1,903Administrator Scope community team
    Hi @April2018mom, I'm glad most of your questions were answered but sorry to hear some of the results weren't good.
    How old is Oliver? 
    Please keep us updated and let us know how you're both getting on as you approach his operation date. 
    Senior Community Officer
    Scope
  • April2018momApril2018mom Posts: 706Member Pioneering
    Update 4

    Oliver is fine. He is 2 1/2 now. His operation happened on Monday morning and he is doing well post operation. It was clear that he really needed this surgery. We returned home Friday afternoon. We will see his doctors next
    week. 
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