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Experience with tethered cord?

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  • Experience with tethered cord?


    I am the mother of a baby aged 3 weeks. My son was bor with a small angioma on his back and doctors decided to go ahead for ecography and IRM so the diagnosis is that he has a tethered cord with a small lipoma.
    I have been reading a lot on the pathology and I know enough but, As you can imagine I have tons of questions on the issue but I preserve them for the doctors I whall see in few days.

    Sorry, I know that there is another post ion the subject but I'd like to hear news from thos who went through it.

    I know that there is a big controversy about having surgery or not and I would like to hear from people who have got surgery, what is their experience? At what age? Is it true that the sooner the better because I happened to read that in kids the surgery is often a definitive solution while in adult too often a new surgery will be needed? Maybe all of this will help us to deal with doctors and make good questions.

    Plus I still can't understand a thing: on the IRM it is written that the cone is fixed between L-3-L4 and I read that in newborns it should be in L3. So are thare different level of tethered cord syndrome? What about the lipoma...?

    We are very concerned cause we have been reading lots of bad stories and we are completely lost. It seems so difficult or even impossible to find a person who has this pathology.

    Thanks to all those who will try to help.