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  1. #1

    Default Second detethering op problems

    Hi guys I'm new.

    First off ill explain what has happened.

    I have congenital scoliosis and SBO , in 2007 I was diagnosed with Diastematomyelia which split my cord and tethered it. I had and operation to remove the honey spur and fix the tethering.

    Over the years I started having severe electrical shooting pains in my legs and genital area which was affecting my bladder and bowel as I would get a momentary loss of control. After a MRI it was found that the cord had retethered and a lipoma was detected in the area.

    On the 9th March 2016 I had an operation to correct the issue and was told 95% of the op was successful there was more tethering than expected and some nerves needed moving but one tethering could not be removed as it healed over some scaring or bone from the spur and would cause damage if he removed it.

    Anyway since my op I have been getting servers pains in lower back and legs which has seriously affected me , I can not walk far or sit due to the pain and my back is ultra sensitive and My head starts to hurt at time, not like a headache but different, it's hard to describe.

    The consultant wants a full body MRI to see what's going on but would love to hear anyone's feedback or thoughts on this matter as aim getting concerned and was hoping all this would be sorted before I start uni in September.

    Dave

  2. #2
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,121

    Default

    Hi Dave, welcome on board!
    An MRI of your entire spine - including the sacral area - and at least the bottom of your brain is definitely a good idea. If you're going to have surgery it would have to be quite soon if your target is to be fit and ready by September. Tethering is a very tough issue, particularly for adults, as we age detethering often becomes less effective.
    Roger
    Sumus semper in excretum sed alta variat!

  3. #3

    Default

    Hi and many thanks for the reply I am glad I found this site

    Yea the MRI is for the head too the MRI appointment letter states the following

    MRI Head
    MRI Spine Cervical
    MRI Spine Lumbar
    MRI Spine Thoracic

    I am hoping there will be no further surgery as I just had one on the 9th of march but the pain in the lower back and legs are quite servere at times.

    When I sit or walk it feels like the muscles in my legs have ripped or that I have damaged my hamstring on both legs and only lying down eases the pain. Im currently needing to use a wheelchair when out shopping

    I just hope I can get things solved soon as I have already delayed Uni for a year and if I delay it again i will loose my place and need to reapply.

    From what I can gather my condition is rather rare with the boney spur etc and I was surprised that it was not discovered when I was younger.

  4. #4
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,121

    Default

    Insist that they add "MRI Spine Sacral" to that list.
    If you have a low lying conus (quite common with tetheted cord) they could easily miss something significant in the sacral region.
    Roger
    Sumus semper in excretum sed alta variat!

  5. #5

    Default

    Quote Originally Posted by Dodger67 View Post
    Insist that they add "MRI Spine Sacral" to that list.
    If you have a low lying conus (quite common with tetheted cord) they could easily miss something significant in the sacral region.
    Had my scan and seen specialist and everything seems fine on the MRI, there is some tethering still but that is due to the nerve being fused to the bone where the boney spur was removed .

    However I am still in pain in the lower back and legs where at times sitting or standing is unbearable and I feel sick and a bit dizzy.

    He is sending me to pain management to manage the pain as he hopes it is just the healing process that is causing the issues.


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