Post-Surgery Side Effects?

Itr786

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Hi everyone. (sorry I didn't know WHAT to have as the title!

I'd considered myself as pretty much cured of epilepsy (is that even possible!?) after having brain surgery in March 2017.
I've not have any breakthrough seizures, it's coming up to 12 months!.., there has been 2 incidents I had a few months ago that I'd call auras that I always had as a buildup for my seizures to begin, but none materialised into full on seizures. I'm still on keppra and lamotrigine like I have been for a handful of years, which I'll be weaned off in the future.

My issues have arisen over the past few months. Due to the difficulties I had after surgery, I stayed pretty secluded from the worries of life, finance was dealt by my wife, I stayed away from returning to work, grocery shopping etc... I took things REALLY slowly.
I went out for regular fresh air walks through parks, going to see family/friends etc...
Things went well, and I felt it was time to comeback to reality, so I returned to work, begun doing tasks a normal 34 year old person, married with 1 child does.
The problems begin to rear it's head when this happened.
I begun suffering from anxiety, 1 particularly incident following a tiny misunderstanding with a colleague at work, that I blew out of proportion throughout the day, to a point I begun crying/shaking uncontrollably for a while that evening.
Having spoken to my gp, I'm having therapy to help me out of the anxiety.
Now I seem to have begun having slightly disturbing mental issues. Seriously imagining the idea of death, the consequences, sometime ideas of suicide.. I'm also having issues with pretty severe rage against other people. I'm able to tame this anger, but lord knows where I'm going with this. These sudden issues have really made me feel I've taken a step backwards, even though I'd felt I was pretty much 100%, and the worries of what may happen next is a concern.

Has anyone else had side-effects like the above post surgery? What are the side effects of surgery epilepsy?
What steps should I take next?
 

Nakamova

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I don't have experience with surgery, so hopefully others will chime in. A few questions though: Are you still on meds? And did the surgery remove an area of the brain related to mood? If yes, either of those could be factors in the recent issues you've encountered.
 

Nakamova

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Also, I edited your thread title to be a little more specific, to help with responses. Let me know if you'd rather change it to something else.
 

Itr786

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Hi,
Yes I'm on keppra and Lamotrigine.

The procedure was Temporal lobectomy is a surgery,* brain*tissue in the temporal lobe is cut away, to remove the seizure focus.
 

Nakamova

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According to the study at the link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1176323/ (and many similar studies), mood disturbances are a relatively common side effect of temporal surgery. Since Keppra is well-known to exacerbate mood issues, maybe it's worth weaning off of it and/or trying a different med in it's place?
 

Music36

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Hi Itr,

I had the laser ablation surgery on my left temporal lobe in 2015. Most of my Hippocampus and part of my Amygdala were removed. I believe the Amygdala removal is what effects our emotions. My first year after surgery was really rough. I felt like I had severe anxiety disorder and bipolar disorder for awhile. The first few months or so I cried a lot for no reason. I was a basket case. Before surgery, I very rarely cried. I felt like my personality changed. It totally freaked me out. I was on an emotional roller coaster and my emotions were so powerful and intense I couldn't handle it (even the good feelings). I would go from euphoria to depression/suicidal and back to euphoria. Eventually over time, I felt normal, back to my old self. Well, I'm not completely back to my old self. I think I have anxiety disorder, but it's a lot better since my brain has healed. It's been 2 1/2 years since my surgery so I don't know if there will be anymore healing for me. For one thing, I find that I can't handle stress like I used to be able to. But, I do self talk when I have anxiety and calm myself down. One of the things that really helps me a lot with negative emotions (e.g., anger, anxiety, depression, etc.) is listening to music. I try to avoid anti-anxiety meds b/c they can be addictive. But, they can be helpful. You just wouldn't want to become dependent. Psychotherapy can help. I probably should've went for therapy but I didn't. I don't have insurance or the money.
 

Music36

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I also get auras since surgery, but no complex partials. Although sometimes they feel like they are trying to go into a complex partial. My aura is intense fear, so it can be difficult to differentiate between the auras and anxiety.
 

Music36

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I should add that when I cried in those first few months or so post-surgery I would feel severe anxiety.
 

CQ:)

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I had surgery in March 2011 on left temporal lobe to remove scarring on front left temporal lobe.

Sorry I'm just being nit picky here but there still is no cure for epilepsy so things like surgery & VNS are other ways to help treat the seizures.
Also auras are still seizures pretty much simple partials.

I was 2 years seizure free but started having funny feelings again in 2013.
After the surgery, more so ater the funny feelings I started to over think / over analyse things more. Everytime i had a funny feeling id question it, it was more so because i didn't know what was going on & like answers. My neuro & I monitored these funny feelings & he adjusted my meds then I had a VEEG in 2015 which confirmed I was having focal seizures or simple partials.

Pre surgery my seizures were always the same, would have the same aura followed by a complex. But since the surgery little things have change, i'd question it alot because i dont like change but I've learnt to deal with it.

I started seeing a psychologist in 2015 to help me deal with stress (which ive always had an issue with even pre surgery) & my overthinking, she did a lot of work with me & end of last year i finally got to the stage where I could do it on my own. I also have a neuropsych who was part of the team involved with my surgery & she's at the same clinic as my neuro so i see her when i see my neuro.
 

Music36

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CQ,

I also have a very analytical mind and want answers to everything. Unfortunately, I was not able to receive all the post-surgery treatment I should have and needed b/c I have no insurance. I have been my own therapist which is not easy to do. I have the education and training to be a therapist, but you really can't be your own therapist. I received the surgery through the hospital's financial assistance program, but they wouldn't keep me on it to receive post-treatment. I was part of research, but I felt like I had brain surgery and was thrown in the street. I did receive neuropsych evaluations pre and post surgery (which is part of their research), but no therapy. I couldn't even have all the post surgery visits with my surgeon that I should have had. I was very upset at the way I was treated. It's all about f---n money. I don't blame my surgeon. He has no control over the matter. This is at a big university hospital.
 
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CQ:)

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CQ,

I also have a very analytical mind and want answers to everything. Unfortunately, I was not able to receive all the post-surgery treatment I should have and needed b/c I have no insurance. I have been my own therapist which is not easy to do. I have the education and training to be a therapist, but you really can't be your own therapist. I received the surgery through the hospital's financial assistance program, but they wouldn't keep me on it to receive post-treatment. I was part of research, but I felt like I had brain surgery and was thrown in the street. I did receive neuropsych evaluations pre and post surgery (which is part of their research), but no therapy. I couldn't even have all the post surgery visits with my surgeon that I should have had. I was very upset at the way I was treated. It's all about f---n money. I don't blame my surgeon. He has no control over the matter. This is at a big university hospital.
Hi Music

I’m in Australia and we have a health system called Medicare which is the governments health system so we don’t need medical insurance like USA to have operations or get medications etc. But in some cases it’s handy if you did have medical insurance because if you had an operation you can sometimes get in quicker as private then public.

Where I had my surgery it was all covered under Medicare so didn’t cost me anything for any of my pre surgery visits, surgery, post surgery check ups. Even now the epilepsy clinic I go to is at the hospital where I had my surgery so it’s all covered by Medicare.

When I had my surgery I went through a program to have the surgery, as part of the program I had to go to the clinic for regular checkups for two years. I saw the surgeon at two weeks then three months (which is also when I had pre surgery follow up appts) then after that I just saw my neurologist and neuropsychologist fir regular regular checkups. It was every 3 months for the 1st year then every 6 months.

Once the 2 years was up my neuro and I discussed whether I would continue going to the epilepsy clinic to see him or go back to my local neuro, we decided it was just as easy for me to keep going to see him at clinic. The clinic is in the city so 3-4 hour train ride each way but it’s worth it as even though my local neuro is lovely he never really told me much, just increased meds. Where the neuros at the clinic always give me answers no matter how small they are or how much I’m overthinking and they try to not mess with meds too much.
Technically once the 2 years was up I didn’t need to keep seeing the neuropsychologist but she is happy to keep seeing me as long as I am going to clinic. She is at clinic same time as my neuro so I usually see neuro then straight after see neuropsych for a quick chat to let her know how things are going and pretty much where my head is at (how stress levels are, how the overthinking is etc)

I find a lot if people can’t understand what you mean when you say you overthink things so I just give up explaining. I found apart from my epilepsy specialists and psychologist only ones who know when I’m overthinking is my best friend (because we’ve been friends fir so long and she knows me so well) and another very good friend (who also has epilepsy)
 
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