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Tethered Cord (TC)

April2018mom
April2018mom Posts: 2,882 Disability Gamechanger
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. 

Comments

  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,780 Pioneering
    Hi @April2018mom apologies for the late reply. How did it go? Please keep us updated. ;)
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    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
  • loopy12a
    loopy12a Community member Posts: 10 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.
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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. 
  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Thinking of you all @April2018mom
    Disability Gamechanger - 2019
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Thinking of you x
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online 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.
    Community Manager
    Scope
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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. 
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Wish us luck the test is tomorrow morning first thing. 
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Best of luck today @April2018mom! :)
    Community Manager
    Scope
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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. 
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    Hi @April2018mom, best of luck to you and the little man today. Do let us know how it all goes.
    Community Manager
    Scope
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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. 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 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_Scope
    Adrian_Scope Posts: 10,821 Scope online 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. 
    Community Manager
    Scope
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    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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