Medication after surgery

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Medication after surgery

Postby raspberry » Thu Feb 02, 2017 7:46 pm

I would be very interested in your experiences with withdrawing antiepileptic drugs after surgery. For how long did you have to take drugs? Which ones and how much of them? Have you become seizure-free without drugs after surgery?

The reason I am asking: I underwent surgery for a cavernous malformation a couple of months ago. Before that, I had a single grand-mal seizure which was most likely caused by a small bleeding. Since then I am taking antiepileptic drugs but as I suffer from side effects I would like to end them. Unfortunately, my doctors disagree about the right time for that - that's why I am interested in other people's experiences.

Thanks for your help!
raspberry
 
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Re: Medication after surgery

Postby Elizabeth » Thu Feb 02, 2017 8:18 pm

Welcome,
Congratulations on ur successful surgery!! We obviously can not advise u on what to do because we are not doctors... But I would highly recommend finding a doctor to try to help support ur goals...it might be possible with the right doctors and planning, but it can also be risky. I had tons of partial seizures...like 20/day prior to surgery. I was on keppra and never had a grand mal so I was lucky. I hated the keppra, but if it was what I needed to prevent a grand mal I would have kept taking it. After my surgery I saw tons of neuros that all refused to let me wean off. Dr. Spetzler was my surgeon and said I needed to stay on keppra for at least a year afterwards and then I'd need a doctor to support my goal. So I stayed on it for a year post op and then found a great seizure specialist to help me wean off. He did an eeg, checked me out, explained all the risks, gave me a list of medications and things to avoid, and then gave me a specific weaning schedule. He also made sure I understood that I could not drive during the weaning process which lasted several months. If I felt anything strange or had any seizures...I was to report to him and he would decide what to do. If I got sick, I was to rest extra. I did fine and weaned off completely uneventfully about 5 years ago. I had to go back on once shortly because I got really sick and needed several antibiotics that could lower the seizure threshold...he said to be very careful and that's what we did. I am extremely thankful for that patient, kind, thoughtful doctor and for Dr. Spetzler who did a great job removing my blood stained brain so that going off meds was even remotely possible. I was super lucky in many ways...I hope u are too!!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Medication after surgery

Postby raspberry » Fri Feb 03, 2017 8:13 am

Thank your for sharing your experiences. It sounds like a great success story.

For me, it is also Keppra that I would like to quit. I am still getting tired easily and my neurosurgeon believes it is a side effect of Keppra. He thinks I could wean off after 6 months but the neurologist said I should take it for at least one year, maybe even two years. Well, I will see. I guess I should ask for a third opinion ...
raspberry
 
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