Life post surgery

[Itr786]

I've had right temporal lobectomy surgery afew months ago, I'm still in the 'recovery' stage of the surgery.

I was wondering what life was like for people after they had surgery to stop seizures?
There's many things in life that epilepsy has been the cause of me not being able to do. These include playing football (soccer in the US), playing squash, mountain bike treking etc... These were triggers for my seizures.

I've also had a life of very strict sleeping patterns, and making sure I got the correct amount of sleep each night.
I've always been hopeful I'd be able to start up being able to do some, if not all of the above (including not having a bedtime at my age!).

I'll still be on keppra and lamotrigine for afew years yet, I'm not sure that would have a bearing on life looking forward, and how I'd like to live it...

What were people's experiences on how they lived their lives once they had surgery, and were sure (as possible) epilepsy was a think of the past, what they were able to do that epilepsy stopped them from doing in the past?

 

[Porkette]

Hi Itr786,
I had the same type of surgery that you did but it only reduced my seizures but that didn't bother me because my seizures were reduced from an average of 300 a yr. to about 68 a yr. and many of them were just aura seizures where I never went unconscious.
Life has changed a lot I'm a lot happier, more independent and I feel happier . I also don't take as much med as I used . I wish you the best of luck and May God Bless You!

Sue

 

[txtiger]

I had left temporal lobe surgery 10.5 years ago. It stopped my seizures for a few years, then I started having breakthroughs every so often. They were simple partials/auras, though, when I was having complex partials before surgery. I have had a couple of complex partials over the years, but adjustments to my meds have helped (knock on wood) reduce them back to simple partials. I do still take fairly high dosages of two meds (Keppra XR and Vimpat), but I don't have the side effects that I used to.

Like Porkette, I am more independent and happier than before surgery. I don't think I'll ever be able to say my E was cured, but I'm glad I had the surgery.

 

[Cint]

Sorry to burst your bubble, but I had a Left Temporal Lobectomy and was seizure-free for 14 months. After that, the seizures came back worse than before, as did the depression! Before surgery, I was experiencing only CP seizures. After surgery, not only did I have CP's but they went into TC's as well. I went thru numerous meds, to no avail. Then had the VNS. The VNS didn't stop the seizures completely, but it took the TC's away. I still have some CP seizures and I still take a high dose of Keppra along with an anti-depressant. Epilepsy is part of my life, forever, something I've learned to live with.
There is that 20% of folks that NOTHING works. I happen to be in that group, unfortunately.

 

[seizuregirl]

I had right front temporal lobe surgery with part of my hippo-campus operated on also, about 6 yrs ago after having 4 dr's all agree that it would end them, but it made my seizures worse and it destroyed my short-term memory. I had, mostly, complex partials before with a few tonic-clonics among them, and now it's the opposite, I have tonic-clonics more than complex-partials.

And like Cint said, there is the group that nothing will work, and I'm in there too. I've slowed them down with numerous meds but the longest they've been absent for is, perhaps, no longer than a month.

 

[Itr786]

That's horrible news, I'm very sorry to hear those 2 experiences

With how difficult I found surgery, there was complications during my surgery, according to the surgeon I had excessive swealing of the brain after surgery, which brought along a host of terrible side effects which meant my stay in hospital doubled.
My stay in hospital was around 15 days. I couldn't imagine how hard I'd find it if it proves to have had no effect of my seizure.

I'm now noticing another issue post surgery... It's been around 2 months since surgery, I've been out to a few shopping centres. My eyes are really struggling to keep up with it all. My brain feels like it begins to work overtime when looking around, my eyes struggling to keep up/take in what I'm looking at at, then my eyes just to feel fatigued (best way I can describe is if you can imagine sitting watching TV for a full day, and how your eyes/head would feel after that.), but I feel those effects after 10 mins in store).

On the plus side, I have gone around 14 weeks since I had my last seizure.

 

[Nakamova]

Hey ITr, here's hoping your surgery keeps you seizure-free.

The sensation you describe reminds me of when I was overmedicated on Dilantin. Are you on any meds that might be a contributing factor?

If possible you should keep a journal of how you're feeling during this recovery period. That way you'll know if any side effects are getting better or worse.

 

[Itr786]

Hi,
I take 1500mg keppra and 200mg Lemotrogine, but I've been on these drugs/dosages for well over 2 years. I know to well the effects aed's have, the first one I begun with when I was diagnosed was Carbamazepine, which gave me horrendous side effects!.

It would make sense had I begun taking one/both of these recently, I'd have thought due to the fact I'm on the same aed's pre/post surgery, they shouldn't have such an effect?

I need to chase up and make an appointment with my consultant.

 

[Nakamova]

It's probably not the meds, more likely just tpart of the post-surgery recovery process. But might be worth having your med levels checked next time you see your neuro, just in case.

 

[Music36]

Hi Itr,

I had the Laser Ablation surgery on my left temporal lobe 22 months ago. My left Hippocampus and Amygdala were removed. The thought of having laser surgery sounded less scary, but I end up dealing with the same side effects as those who have a traditional lobectomy. My brain was very swollen and I had to stay in the hospital longer than I was originally told. The pain was so bad that morphine didn't even help until about 24 hours after they finally put me on steroids which I don't understand why they didn't do that right away. I also was very, very sick from the anesthesia for days.

My surgeon told me it takes two years for the brain to heal after surgery. It's a long process and we have to try and be patient. Surgery has effected my emotions, memory, and communication. It was exhausting for me to have a conversation for months b/c it was very difficult for my brain to come up with the words I wanted to say. I still have trouble coming up with words, but it was a lot worse the first six months after surgery. My emotions were heightened and intensified to levels I had never experienced and I felt like my personality changed. I was crying all the time for no reason. I rarely cried before I had surgery. I had felt like I was bipolar and had severe anxiety disorder. It was all freaking me out. I saw improvements in everything over time. It's a slow healing process. You'll feel better six months after surgery than you do now and you'll be even better a year after surgery.

Surgery stopped my complex partials, but I was having a lot of auras the first few months or so after surgery. Now, I just have occasional auras (2 or 3 days a month). I know I'll need to take meds the rest of my life. I just hope I never go beyond having an aura. I notice that my sleep patterns still have an effect. Staying up real late at night can cause me to have auras. Sometimes, when I have an aura these days it feels like it is trying to turn into something bigger, but luckily it hasn't.

 

[BIGMAN131307]

What were people's experiences on how they lived their lives once they had surgery, and were sure (as possible) epilepsy was a think of the past, what they were able to do that epilepsy stopped them from doing in the past?

Well for me surgery was a necessary evil I had to do. The AEDS weren't working and my CPS were just getting worse.
I was fed up, and decided I needed to have it done sooner than later. You can find a more detailed road map of my surgery journey here.

After my surgery I had the expected head pain & swelling. Which slowly improved over time. The swelling went away. But the head pain was a mixed bag. The pain that came from the actual surgery went away. I still suffer from bad headaches daily. My neurologist says my headaches "may" be seizure activity but won't confirm with tests. As long as I have no other issues, it's a wait and see.

Unpredictable CPS & Tonic Clonics or daily Headaches?

I'd take the daily headaches.

I'm knocking on three years after my surgery without "seizures" within the next two weeks.

Although my "seizures" may have been controlled my health has been hindered from other AEDs I've taken in the past. Those AEDs leaving me with IBS. Which causes me stress
and discomfort. That added stress makes my headaches worse, causing more stress.

I'm planning to get back to driving when I can afford a car. ATM that won't be for a while.
There are a lot of things I would like to do, I just got the decide what to do first.

 

[Itr786]

Thank you for everyone's input, all very helpful, and very much appreciated.

As I've been told by the surgeon, it's a very long recovery process after such major brain surgery.

 

[Itr786]

I had a weird experience yesterday evening.. I've never been able to train, or do any sort of physical activities for years due to epilepsy. I had a little workout yesterday evening, nothing too grueling, just afew pressups and situps, enough to get me heart beating.
I suddenly had the warning signs of what I've always had before my seizure kicked in... (I believe it's knows as auras)...

Thinks turn all little echoey,

I get a deep sinking feeling (like I've been told horrible news by someone)

Stomach begins to rumble,

I get tingling feeling going through to body.


I thought to myself...
"well this is it, it's make or break, I'll know in the next 30 seconds whether what I've been though over the past 3 months with the surgery has had any effect on me or not"....

I just sat there on the floor in complete silence, no movement, just staring into thin air. Trying to calmly breath in and out, attempting to get my heartbeat to slow.
I Waited a minute before I realised it hadn't materialised into a seizure.

I was pretty frightened up because of it, so lay in bed, but pre surgery, what I experienced was a surefire seizure.

I'm not sure if I take this positively, or accept that eventually what I experienced WILL eventually worsen back to having the seizures I was having pre surgery...

Are having these 'auras', or warnings signs common after having major brain surgery?, I'm looking forward to seeing the surgeon & my consultant to update them on my experience, get their opinion on what to make of it.

Sitting here typing away, there's no doubt the surgery has had an effect on me, and for the positive (so far!), but it's also frightening the life out of me that I'll have a seizure in the future.

I'm taking the positives out of my experience over the past 24 hours and running with them.

 

[BIGMAN131307]

I had a weird experience yesterday evening.. I've never been able to train, or do any sort of physical activities for years due to epilepsy. I had a little workout yesterday evening, nothing too grueling, just a few pressups and situps, enough to get me heart beating.

I suddenly had the warning signs of what I've always had before my seizure kicked in... (I believe it's knows as auras)...

The exercise was too strenuous. Your body is telling you this. Moderation is the key for exercise. Tell your neurologist about this event. The brain takes at least a year or more to heal from surgery.

During the first few months after my surgery I experienced similar effects. I was doing more than my body was ready for. So I'd have "seizure like" effects. Stuff like nausea, temperature changes, etc. But the actual seizure didn't happen. I told my neurologist about this, and I was told to slow down.

 

[Itr786]

The exercise was too strenuous. Your body is telling you this. Moderation is the key for exercise. Tell your neurologist about this event. The brain takes at least a year or more to heal from surgery.

During the first few months after my surgery I experienced similar effects. I was doing more than my body was ready for. So I'd have "seizure like" effects. Stuff like nausea, temperature changes, etc. But the actual seizure didn't happen. I told my neurologist about this, and I was told to slow down.

I think you're completely correct, I need to rein in my expectations, and know limits of what I can/can't do at the moment.

 

[Music36]

Itr,

I previously mentioned I had surgery 22 months ago. I have had many auras since my surgery and sometimes it feels like it is trying to go into a bigger seizure (complex partial, to be specific), but it hasn't since the surgery. I too worry sometimes that someday it may go into a bigger seizure, but it doesn't do us any good to worry. My aura is intense fear. I just try to remain calm and relax when it happens.

 

[txtiger]

Itr,

As others have said, it takes time for your brain/body to heal after surgery. Take it easy. I believe I mentioned previously that I was seizure-free for a couple of years before I started having breakthroughs. As long as I recognized them and kept my doctor updated, they stay at simple partials. It was only when I was in denial about them worsening that I had another complex partial. When I have talked t my doctor, he pointed out that they have changed, so the surgery wasn't a failure.

Just keep yourself rested and keep your doctor in the loop, and hopefully, you will remain seizure-free.

 

[Itr786]

I'm having an issue at home, in the bedroom department!.

It's been over 3 months since my surgery, and have noticed a slightly embarrassing issue...

I seem to have lost any sort of sex drive. My wife's been very supportive on the issue, as she has been for a very long time, but I have not once been in the mood to have sex.
I've always felt I wasn't normal with this before my surgery, but since the surgery I have absolutely NO desire to have any sort of sex.
I've not discussed this with my gp, and not yet seen the surgeon to bring up the conversation (I'm not sure I would/will have the confidence to do so), but I always thought after the surgery, this would go the other way, and the desire to have sex would improve from what it was before surgery (which wasn't amazing), but now it's literally nothing.

 

[Nakamova]

I've not discussed this with my gp, and not yet seen the surgeon to bring up the conversation (I'm not sure I would/will have the confidence to do so).

Please don't be afraid or embarrassed to talk to your doctors about this. They can help you figure out what's going on and what might help.

 

[truegrit]

I've noticed the problem in stores also. I believe it's caused by the overhead lighting. Try wearing a pair of lightly tinted sunglasses in the store. I know it's worked for me.