Surgery? Please give me some advice! Thanks!

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My doctor said that I should look into having brain surgery . I'm coming off of Phenobarbital and switching to Lamictal but even the highest dose of Lamictal isn't doing it for me.

Ever since I started getting seizures, my foot would go stiff and shake violently. My doctor believes that these are seizures. I get these before going into my seizures or without my seizures. My foot usually goes numb and shakes at night waking me from my sleep. Sometimes it happens out of no where in the day! All of the numerous medicines that I've tried do not control these, "seizures".

I have mixed feelings about the possibility of surgery. You have to stay in the hospital and have seizures and under go tests. I'm scared of SEIZURES. I hate them! They are holding me back and they are on my mind all day. That's no way to live for me.

I'm so afraid of doing another EEG! I'm scared of it. They want me to sleep and I just can't! It's the pressure of them wanting me to relax and sleep so I get anxiety. Have you ever felt the same way?

So if these are seizures, I will consider the surgery .

If you had brain surgery, what happened with the testing and what was your result?
 
Do you have any other seizure symptoms while on the Lamictal or is it only the leg thing that is uncontrolled? I assume the shaking is just on one side of the body right? That would suggest a localized area where the seizures are originating, which would make surgery something to consider. EEG testing would be to get a sense of if the location can be narrowly pinpointed.

Here's some info here to check out: http://www.epilepsyfoundation.org/about/treatment/surgery/evaluation.cfm

For me, I don't think I could do surgery -- but I don't know what it's like to have refractory epilepsy. Surgery has really helped some folks: http://www.sciencedaily.com/releases/2006/04/060404204417.htm

I would ask a lot of questions about success rates over the long term for that particular surgery center, how much experience their team has, how long the whole process might take from start to finish. What the risks are, whether post-surgery you will still need meds, etc.
 
On every medicine I have been on, I still have had that brief stiffness and then shaking of my foot. It is only on the right side of my body which means that the left side of my brain is where it's originating. Right?

Before I go into a seizure I get the stiffness in my foot and the shaking. I have different kinds of seizures. I've been aware plenty of times while the right side of my body shook. I also have the grand mal seizures where everything goes black. I've also been aware and seen my whole body shake...which is scary!!! But it always starts with my right foot.

It's so weird. My doctor found it really odd and interesting. She wanted to do more research on it. Also, my foot gets very sensitive sometimes like it's on the urge of going numb. Maybe that could be an aura?

This is so weird! :)

My doctor sent me info on it in an email. She is so awesome! The best neurologist that I've ever had!

Thanks for the reply <3 I'm going to check out the link that you posted!
 
Hi Mrs. Walker,

Sorry to you're having a hard time with seizures. I started having seizures when I was 23 years old. First they were SP, then CP and eventually progressed to TC. I had a left temporal lobectomy back in 1990 and was only seizure free for 14 months. But the surgery/results have since improved.

Here is another link that you may want to check out, explaining Brain surgery:

http://www.epilepsy.com/EPILEPSY/surgery

And another one that was on a Denver news channel the night before last: "Teen Gets Life Back After Having Part of Brain Removed"
The link:
http://www.thedenverchannel.com/video/26962050/index.html?taf=den
 
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Sweet! Thanks, Clint! I'll check out those links as well. How many seizures have you had after the surgery if you don't mind me asking?

Do you know why you have to continue medication after surgery? Is it because if you don't you will suffer withdraws and have seizures?
 
How many seizures have you had after the surgery if you don't mind me asking?

Do you know why you have to continue medication after surgery? Is it because if you don't you will suffer withdraws and have seizures?

I honestly lost count of the # of seizures I've had since surgery. Before surgery, I was only having CP seizures, but after surgery they came back as CP's and TC's. They said the damage was deep in my hippocampas and they couldn't go there or I would end up like an advanced Alzheimer's patient. :(

I've tried about 11 medications and now have the VNS, which for me works.
Now I'm taking Keppra and a small dose of Topomax along with the VNS to control the seizures. Otherwise, I would still be having CP's.
 
That's rough! Wouldn't it be nice for them just to clean the epilepsy from our brains and plop our brain back inside? haha I daydream a lot.

I'm sorry to hear that the surgery hasn't helped you as of now! That really stinks. That's one of the risks that we have to take though. It might not work. But at least we have medication...in our case, STRONG medication and a lot of it. Right?
 
Hi Mrs Walker.

I think brain surgery is one of the biggest decisions to make when it comes to helping control or stop your seizures. Have you discussed it with your fiancee & other loved ones to see how they feel? Also if you decide to go ahead with surgery ask as many question as you can.

I have left temporal lobe epilepsy & medication hasn't helped control my seizures (auras & partials). I was considered a good candidate for surgery & had to have a series of tests in Melbourne. I had MRI, SPECT & PET scan in September & in November I sepnt a week in hospital for Video EEG monitoring. While in hospital I sleep deprived myself & had my medications reduced alot to help bring on seizures. In the end I only had a couple of auras & none of my usual partial seizures. Although I didn't have any partial seizures while in hospital the specialists had enough info to decide I am an excellent candidate for surgery.

I am due to have the surgery on 10 March, my Mum & I have to go to Melbourne on 6 March as on 7 & 8 March I have appts with surgeons, specialists & some more tests.

I am actually excited about the surgery but probably deep down a little nervous. I have already been told that there is an 80% chance my surgery will work & I may have to stay on meds for the rest of my life but they will gradually be reduced. I try to stay positive about the surgery because otherwise I'll just get myself too stressed. I just tell myself it will be great if the surgery could reduced my auras which I have on a regular basis but if it does stop the seizures all together then that is the big bonus.

I wish you the best of luck with your decision & hope you can come find a way to control the seizures & your foot stiffening & twitching.
 
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I've had neurologists try to talk me into surgery when they didn't even know what was causing my seizures so I'm was very careful when I did consider one.

If you want to consider surgery you should definitely ask:

What is causing the seizures & where in the brain it is (if you don't already know).

What are the statistics of people having had seizure operations on that part of the brain. Make sure you're given numbers, not words like "good, OK, or so-so". Also if you are given numbers make sure they specify per million, percentage or what. Don't assume it's one or the other. You might even want to ask where you can access those statistics.

If they tell you how many (I relate to percentage best) were successful ask how long after the operation was the last time they were checked. Many statistics only account for up to 6 months after the operation & many peoples seizures return after the 6 month mark.

Just seeing how helpful or reluctant they are when you ask those questions should help contribute to your decision.

I'm sure there's more but I can't think of them right now:ponder:. I'll post more if I think of them.
 
Someone sent me a link which is a series of questions to ask if you are thinking about havng surgery. Maybe some of them may be helpful to you.

* What will be the outcome of the surgery?

* How long before the surgery works?

* If the surgery does not work, what do we do then?

* Is there anything I have to do prior to surgery?

* How long will surgery take?

* How successful will the surgery be?

* What are complications which can be expected from this surgery? Long term, short term.

* What complications have you had?

* If I get a complication can it be fixed or is it for good?

* Is there much pain post operatively and how will it be treated?

* How long will I be in hospital?

* How long will it take to get over the surgery?

* Will I need any special care at home?

* Do I need to see my local doctor?

* When do I have a follow up appointment?

* What problems can I expect post operatively?

* What is a post operative seizure and how can I deal with it?

* What medication can I expect to take post operatively?

* Could I be on meds for the rest of my life?

* Is it likely I will need any further treatment?

* Will you be available in my post operative period?

* If I have a problem post operatively, who do I call?

* Do I need to get a second opinion?

* If you feel prior to surgery you are not at your best, can I be notified to make the choice if I wish to proceed or postpone the surgery?

* After neurosurgery there would obviously be a scar. Would that cause seizures?
 
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Wow! That's A LOT to think about. Brain surgery is a huge deal. Thank you for your input and that loooooong list of questions lol. I'm glad to talk to people who have real experience and different results.

I talked to my family about it and my dad and my step-mama said that I should do it if I could but they do not know what could happen if I did get surgery. Also, my fiance is scared. He is afraid that I'll be stuck in a wheel chair or mental or he think that I might die.

If I decide to go through with it, It will take years for me to cope with the idea of even having surgery. We'll see what happens. I'm keeping an open mind and looking at the PROS and the CONS. Of course I will talk about it a lot with my doctor.
 
Wow! That's A LOT to think about. Brain surgery is a huge deal. Thank you for your input and that loooooong list of questions lol. I'm glad to talk to people who have real experience and different results.

I talked to my family about it and my dad and my step-mama said that I should do it if I could but they do not know what could happen if I did get surgery. Also, my fiance is scared. He is afraid that I'll be stuck in a wheel chair or mental or he think that I might die.

If I decide to go through with it, It will take years for me to cope with the idea of even having surgery. We'll see what happens. I'm keeping an open mind and looking at the PROS and the CONS. Of course I will talk about it a lot with my doctor.
Sorry the list was a bit long lol. If it's easier just go through the questions & pick out any questions you think would be good to ask the neuro.

The hospital I'm having my surgery at has a great team of specialists. The specialists I have already met have been very helpful & told me nearly everything I needed to know without me having to ask them. There were only a couple of questions I had for them which they didn't cover.

The epitiologists have already explained to me that there are chances the seizures will come back or the surgery won't work. They have also said that there is a 1% chance I could have a stroke & because I have left temporal lobe epilepsy there is a slim chance my right side can be affected.

I am lucky that I have the support from all my family & my friends when it comes to the surgery. They all understand the risks involved but are all keeping positive the surgery will at less help reduce my seizures.
 
I had surgery in '03 and have detailed my experiences here:

users.eastlink.ca/~kehoe/surgery/

I hope it'll help with some of your questions.

Kevin

P.S. Apparently I haven't been here long enough to post active links so you'll have to copy/paste the above URL.
 
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Mrs. Walker,

I understand you are scared. Surgery is a scary thought - one of my neuros is trying to sell me on it for another neurological disorder and so far my answer is "no." Absolutely no. Not until every other viable option is explored and everything else has been tried. And you have a lot of other options at this point, and are nowhere near trying all that's available to you..

It seems wayyyy to early in your process to be talking surgery. You've only tried two drugs. There are dozens more yet to try. You aren't even fully off the phenobarbital and just on lamictal yet. And you are still on the step of a simple sleep-deprived EEG, and, they don't even know from your eeg exactly where your seizures are coming from. Your doc is just guessing on that based on symptoms. They would never do surgery unless they positively KNEW where those seizures are originating, based on an EEG (and perhaps an invasive eeg), MRI, PET, Functional MRI, etc. There is a lot more testing to do.

I'm so surprised your doc even laid surgery out as a serious possibility at this point. If he did, maybe it's time to look for a new epi and get a second opinion.

Relax, try not to worry. Surgery won't happen for a long time, if at all. There are lots of things to try, tests to take, to determine if it's needed and that it's a viable option.

Hugs to you.
 
Thank you for replying to my thread! You know, Endless, I haven't tried a lot of the seizure meds out there. And I dread having an EEG! I feel like I've been sentenced to death! lol I'm a major DRAMA QUEEN.

I just want those little foot seizures to go away! They are so annoying and they scare me because when I have those BIG (Grand Mal) seizures it starts out with my foot. I've tried 5 medicines so far in the past 4 years. It's tough and I hate it. I wonder why this had to happen to me.

This may sound weird to you guys and this is extremely personal but I think that I have epilepsy due to MAJOR STRESS...just maybe.

My dad would yell and hit my mom and I would try to protect her every single night from age 15 to 17! I was so depressed at school and at home. I'm the oldest of 6 and I had responsibilities because both of my parents worked. I just wanted to be a kid and not have to worry about my mom's safety all the time.

I remember my dad was fighting with my mom in the living room and I started screaming like a mad woman. I took a wine bottle and smashed it on a wooden chair and held it up screaming. My dad was so mad at me but he never touched me or any of the kids.

I slept with my mom on the couch in the living room to keep an eye on her. That night I would lay awake twitching. My whole body would twitch and I felt like I was out of my mind. I stayed home for a month because I felt like I was going insane. I would twitch all day. My body going into spasms. I did poorly in school and before I was a straight "A" student.

I would sit by my parent's closed door with a baseball bat ready to swing it at my dad if he tried to touch my mom. I would fall asleep there and then get ready for school. That was a tough time for me.

About 8 months later I was at my mom's new house with my step-dad and she sat me down on the couch because she wanted to talk about my dad and how he was harassing her. I went into a seizure and she was crying. She didn't want to touch me.

After trying to protect her for those years, it didn't pay off because she doesn't call me and she moved 3 hours away. She married someone that I dislike greatly and he is 10x worse than my dad in my opinion. I don't know her anymore.

After all of that, I gave up trying to protect and stress about stuff like that because it only brought on the seizures.

I hope that parents know what fighting even arguing can do to a child mentally. You can really mess them up.

So after all of that turning 18 pretty much sucked because that's when I started getting seizures. I can't drive. I haven't been able to hold down a job because I am still recovering after 4 years of all of that drama. I go EASY on myself because I think that I deserve it. I spoil myself and try to make every day the BEST day ever just to be happy and not think about my condition.

If I can get surgery, I will because there is a chance that I won't have to live in fear like I have my whole life.
 
Mrs. Walker,

You have been through so much. I am so, so deeply sorry you had to experience all that from such a young age. And you are still standing, which shows just how strong you are.

Have you shared all this with your doctor? He may have meds that will help. I'm not sure he could give you a tranquilizer for the EEG because it may alter the results. But you could ask.

Hang in there.
 
Major stress is an understatement.

I hope you've been able to get counseling to help with all that you've been through. Reducing stress -- physical, physiological, and emotional -- is one of the best ways to be proactive about seizure control.

EEGs may sound scary, but they are more annoying than anything else. Perhaps you could do a sleep study EEG over a few days. That would give you the chance to get used to the EEG set-up and (hopefully) be able to relax. And it would help see if any sleep disorders are contributing to your symptoms.
 
I just want those little foot seizures to go away! They are so annoying and they scare me because when I have those BIG (Grand Mal) seizures it starts out with my foot. I've tried 5 medicines so far in the past 4 years. It's tough and I hate it. I wonder why this had to happen to me.

This may sound weird to you guys and this is extremely personal but I think that I have epilepsy due to MAJOR STRESS...just maybe.

My dad would yell and hit my mom and I would try to protect her every single night from age 15 to 17! I was so depressed at school and at home. I'm the oldest of 6 and I had responsibilities because both of my parents worked. I just wanted to be a kid and not have to worry about my mom's safety all the time.

I remember my dad was fighting with my mom in the living room and I started screaming like a mad woman. I took a wine bottle and smashed it on a wooden chair and held it up screaming. My dad was so mad at me but he never touched me or any of the kids.

I slept with my mom on the couch in the living room to keep an eye on her. That night I would lay awake twitching. My whole body would twitch and I felt like I was out of my mind. I stayed home for a month because I felt like I was going insane. I would twitch all day. My body going into spasms. I did poorly in school and before I was a straight "A" student.

I would sit by my parent's closed door with a baseball bat ready to swing it at my dad if he tried to touch my mom. I would fall asleep there and then get ready for school. That was a tough time for me.

About 8 months later I was at my mom's new house with my step-dad and she sat me down on the couch because she wanted to talk about my dad and how he was harassing her. I went into a seizure and she was crying. She didn't want to touch me.


After all of that, I gave up trying to protect and stress about stuff like that because it only brought on the seizures.

I hope that parents know what fighting even arguing can do to a child mentally. You can really mess them up.

So after all of that turning 18 pretty much sucked because that's when I started getting seizures. I can't drive. I haven't been able to hold down a job because I am still recovering after 4 years of all of that drama. I go EASY on myself because I think that I deserve it. I spoil myself and try to make every day the BEST day ever just to be happy and not think about my condition.

If I can get surgery, I will because there is a chance that I won't have to live in fear like I have my whole life.

STRESS can damage the brain! I didn't start having seizures until my early 20's and even after a LTL I still had seizures. My epileptologist at the time asked me if there had been child abuse when I was growing up. Even mental abuse, verbal abuse can cause brain damage. My father was abusive verbally, mentally. He was downright mean at times. And then when I married, my husband at the time was verbally abusive, also, although he was a pilot and had a HUGE ego, so people on the outside didn't see what went on behind closed doors!! Now that I'm on my own and no husband or kids to live with or hassle me, the seizures have almost subsided. Only an occasional CP every 8 months or so. I live a much more peaceful life now..... and enjoy it.
 
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