Epilepsy Foundation

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Article Summary by Dr. Autumn Klein:

This study asked 15 patients one year after anterior temporal lobectomy how they felt about their seizures recurring. Two thirds of patients were overall positive about the surgery because they had improvement in seizure number or severity. Themes patients commented on centered around continued use of seizure medication, acceptance of seizure recurrence and continued concerns over lack of autonomy. One third of patients who responded negatively to seizure recurrence were not depressed, but they may have had unrealistic expectations of possible surgery outcomes.

Comment: This is a nice study because it allowed patients to freely speak their thoughts on their seizure recurrence, a topic which is often not discussed openly. This article honestly discusses that seizures recur after surgery but it also demonstrates that after seizure recurrence, there are still positive outcomes.

Article Authors: Christopher A. Shirbin a, Anne M. McIntosh b,c, Sarah J. Wilson a,b,c,*
a School of Behavioural Science, University of Melbourne, Vic. 3010, Australia b Epilepsy Research Centre, Department of Medicine, University of Melbourne, Australia c Comprehensive Epilepsy Program, Austin Health, Melbourne, Australia



Article Abstract: Postoperative seizures occur in 20–60% of patients who have epilepsy surgery. Despite this, there is limited understanding of a patient’s experience of the recurrence of seizures after surgery. This study used a qualitative approach to identify key themes derived from content analysis of 15 in-depth patient interviews about the experience of seizure recurrence. The results showed a prominence of psychological issues over medical concerns. The four most frequently expressed themes were perceived success of surgery, medication, acceptance of seizure recurrence, and personal independence. Despite seizure recurrence, patient sentiments were not universally negative; rather there was heterogeneity of views, with some reporting ambivalence and others a sense of satisfaction with outcome. The findings provide evidence for the importance of cognitive reframing and benefit finding in the context of seizure recurrence. Copyright 2009 Elsevier Inc. All rights reserved.

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Tags: Epilepsy, Partial, Psychological, Psychosocial, Seizure, Surgical, adjustment, epilepsy., outcome, recurrence, More…surgery

Views: 408

Replies to This Discussion

I had my left temporal lobe removed in 1999. Not until October, 2009 did I have my first 'breakthrough' seizure. I'm still on medications, but I've gone down from 16 per day to only 4 per day. I'm very pleased with my seizure/drug control as a result of the surgery.
Interesting article... I think that medical programs which offer surgery for epilepsy should do more discussion with the patients before and after the surgery about their expectations and then subsequently, the results and their perceptions of it.
I had an unrealistic view of life after surgery. Everyone had been so positive and I didn't want to let anyone down. At first I lied and didn't tell anyone about my first seizure after surgery for fear of being a failure. When I did it was horrible. My mother cried and my husband offered no sympathy. I never told my son. He thinks all is well since the surgery. The doctors still think it will get even better. It is interesting to wonder how much information really is out there about post surgery seizures as well as how and if seizures change.
Hi Susan,

I felt the same way when I had my first seizure after my surgery; I was in tears from the pain I was in and the frustration. I don't know how long ago your surgery was, but mine was 3 years ago, and I am getting better still. I am having less seizures, only Grand Mal while I'm asleep now so my life has greatly improved : )

Try and be patient, a word all of us dislike I know, but I hope you get the support you need. I have a monthly support group that I attend which is awesome, we all make each other laugh at ourselves! It took alot of courage for me to go the 1st time but I really enjoy it! My husband doesn't go with me, a neighbor does, and swears she learns something every month!

I hope this gives you some encouragement!

Susan Sherman said:
I had an unrealistic view of life after surgery. Everyone had been so positive and I didn't want to let anyone down. At first I lied and didn't tell anyone about my first seizure after surgery for fear of being a failure. When I did it was horrible. My mother cried and my husband offered no sympathy. I never told my son. He thinks all is well since the surgery. The doctors still think it will get even better. It is interesting to wonder how much information really is out there about post surgery seizures as well as how and if seizures change.
A nice reality check for someone like myself exploring the possibility of surgery. If you go in there with unrealistic expectations, as with anything, it will be a perceived failure. It was nice to see negatives expressed, as it is important to know the array of outcomes people experienced, and factor that into my decision. Something I didn't see was how much their dependence on AEDS changed post op, and the side effects. For me this is one of the major contributing factors to my consideration of something so drastic. I'm very bogged down, and they don't completely do the job. If I'm able to cut down my drug side effects, even if I still have some, It would be a success.

The other prespective I don't see but is another facet to unrealistic expectations is just how bad was it and how was it quantified. If they were controlled partially like I am, I don't know for certain how bad it could be because I've been medicated for so long, Ive missed doses and that truly sucked, And I know how much the side effects suck. but how is that quantified to compare to those post-op. and how long post-op are these evaluations- >2yrs if I read the study right. Does it improve any further with time, even if breakthrough seizures occur how much worse would the episode have been without the surgery. if that episode that took place 10yr's post op as mike mentioned happened only 2 years later wouldit have only been one seizure? I know much of this has no good answer, It's largely a way for me to wrap my head around possibly cutting into my head.

I sit here in bed having auras all day waiting for next monday when I go in for a vEEG.

-Carl

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