My 12 year old son was inplanted with a vns a year ago. Even at the first setting (.25) his epilepsy improved. Instead of having daily tonic or tonic-clonic seizures, he normally went 3 weeks without a single one. No medication has had any effect, so it was a miracle for us. We have upped the stimulator to try and get even better results, but itīs remained the same - until recently. After around 6 months on 1.0 off 5 minutes on 30 seconds, he started having more seizures. We then changed the settings to go on 30 seconds off 3 minutes (still 1.0). Now heīs about back to where he was before the vns! I had the impression that if it worked it would only improve - not work for a year only and then not at all! (It is working, we can tell from his altered voice.) Has anyone here had the same experience, or heard of anyone who has? Has anyone had better seizure control at a low setting and seizures worsening at a higher setting? Either the effect of the vns is waning or else the higher setting is causing more seizures...or else his epilepsy is worsening "naturally".
I would so much appreciate answers! Good luck to you all, Carina in Sweden.
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| Now heīs about back to where he was before the vns! I had the impression that if it worked it would only improve - not work for a year only and then not at all! (It is working, we can tell from his altered voice.) |
:hiya: Carina
VNS has no time constraints. It can and does stop working over time and like any other treatment, is only a temporary fix. A band-aide.
Have you had the unit and leads evaluated to make sure they are working properly? Lead impeadance or EOS (end of service ) is often the reason for increace in seizure activity.
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| Has anyone here had the same experience, or heard of anyone who has? Has anyone had better seizure control at a low setting and seizures worsening at a higher setting? |
The settings are very individual. It's a learn-as-you-go process. Tweeking and adjustments to achieve optimun benifits can take some time.
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| Either the effect of the vns is waning or else the higher setting is causing more seizures...or else his epilepsy is worsening "naturally". |
All these are possibilities, but I would think first to have the unit completely checked out. It may turn out he has a lead impedance. Good luck. Please let us up to date on how your son is doing.
It seems to me that the only thing our neurologist can check is the actual settings- not if the device actually does what it is told to do. How do you check for high lead impedance - and what is that? If my sonīs voice is vibrating only occassionally I thought that meant the device is working and not on "on" constantly. If the device is slowly losing effect will our neurologist see that with his programming wand - or will he see only the settings. Will one even see the programmed settings after the battery has stopped working? EOS, do you mean the device or the battery or both?
Sorry for bombarding you with questions, but Iīll be really grateful if you reply...All the best and thanks, Carina.