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Author Topic: VNS removal  (Read 2671 times)
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« on: February 15, 2018, 07:34:10 AM »

Hi all,
Does anyone know which neurosurgeons have experience removing the VNS and maybe even the leads? I could ask the neurosurgeon here that placed the VNS to remove it but know few will remove the leads. This was implanted when my son was 9 and now he is almost 14 and there appears to be a lot more tension in the leads than there used to be ( due to his growth). I am not sure how much stretching can happen before it causes problems. Also, for those of you who did have it removed, did your insurance pay for it? Is there specific language that is needed from the doctor for that to happen? We have seen a worsening in seizures and it seems that would be enough though doctors don't tend to agree with my assessment of worsening. Also, we asked the doctor to turn off the VNS with the wand. Two different doctors told us it cannot be " turned off" but the output can be set to 0 and that is effectively turning it off. Is this correct?
Also, if the leads cannot be removed, what might I expect as our son grows and moves through puberty? What have others seen with kids in puberty having the VNS?
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« Reply #1 on: February 18, 2018, 09:42:34 AM »

I'd like to encourage people to chime in on this one. For the last few years it's only been Birdbomb and me. With over 1100 members someone out there can help this woman out with her questions. The postings stopped here when the VNS Message Board on Facebook was created. You might want to ask the questions there. Coping With Epilepsy is also a good site, try it if you haven't already. I had no problems with my insurance paying for the (partial) explant.
« Last Edit: February 18, 2018, 12:07:05 PM by dennis100 » Logged
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