Hi everyone, Yes i hit my 1 year post surgery mark seizure free! I just came back from hawaii celebrating my anniversary...but; I saw my neuro yesterday expecting to begin tampering off these meds but he told me to return in a year, that I was good could get the liscense, and he could make decisions next April I though by law you only had to wait one year seizure free to get off the meds but now is 2? I been planning to conseve a child and the neuro told me to get on folic acid for a few months and that should be good enough, but I planned to get off the meds first this month to lower any risk of birth deffects, now I have to wait another year.. This is my question, is it one year or two bedfore you can get of the meds? the other neuro told me and certified me that since I had dead tissue and all post studies are cleared I will never suffer from seizures again (Amen) so why prolong the meds? sorry but Im confussed, and now his prolonging my plans. I see my neuro-surgeon tomorrow but I know there's nothing he can do.. Thanks all for listening
I guess here is a view from a different point. What would happen if the doctor told you to lower your dose and seizures came back? It would add to the tangle of twine.
I think the doctor is trying to play the safe and slow card here JUST to be sure everything is working well. One more year is not that much more to ask. We are talking about your safety. There are too many "what if's" that can't be answered until he starts to lower your dose in a year.
I've been on meds since 1981. Think about how long that is, that's almost all of my life. There are too many unpredictables with epilepsy. medications, how our bodies react, removing medications. Nothing is as simple as counting 1-2-3.
Travis thanks for the advise, and I had my appoinment with my neurosurgeon today and he also agreed that it was due to safety measures to wait and see if i go without seizures for another year first. He said everything looked good and he doesnt believe I will have another seisure even when my meds are taken off so atleast Im very happy about that I did start my folic acid treatment as for preparation procedure as told by my neuro, hope everything continues smooth...
Congrats on being seizure free that is what we all dream for. Even if you have to wait another year it is still another year free of the anxiety of having another seizure. Your doctor is just doing his job and making sure that you are going to stay healthy. Be grateful instead of confused for that.
Excellent news about being seizure free post op I too had surgery 15 years ago and was told by my surgeon that I would no longer need to take medication. However, my neurologists did not agree with this and expressed that I should stay on Tegretol CR even going as far as to increase the dosage as my seizures had not stopped although they had dropped from 30 a month to 12 a year (and I only seized at night whilst I was asleep). At this point I was not happy with my consultant and requested to see a different specialist, at the next consultation I had done my own research into meds and requested to be put on Keppra and on starting this med the seizure numbers dropped again. After having a big argument with my consultant it was agreed that I would come off the Tegretol CR, since that med was stopped I have been seizure free (3 months now) and so have come to the conclusion that post surgery the Tegretol was acting more like a convulsant that an anticonvulsant. I have now expressed to my Epilepsy Nurse that if I go another 3 months seizure free, I will be weaning myself off the Keppra, believing what I was told all those years ago from my surgeon as opposed to my local neurologists. As I personally believe that the doctors at my local hospital have been far too cautious for their benefit and not for mine.
I would suggest you find as much evidence you can regarding your surgery and take this with you to your next consultation.
I think it is 3 years seizure free in the UK before you can get a licence, however if you can prove that you only have seizures whilst you are asleep I think it is 4 years and then gets renewed every 3 years.
Good luck with your current seizure free status and future motherhood
I found before surgery that tegretol made my seizures worst too, I was finally changed to Keppra and been on this one since along with Trileptal. So far I feel great and hope it continues until next year, and I wish your hopes of weaning completly off the Keppra works out too. Congrats as well for such a success