How did you get the guts to have brain surgery?

[valeriedl]

When I was first diagnosed with epilepsy I wasn't able to have brain surgery. At my last appt with my neuro he said about having testing done to see if I might be able to now. I told him that I don't want to, even if there was a possibility that I could stop having seizures. I'm scared to death to have someone operate on my brain. I'm fine taking meds, using my VNS and probably having seizures for the rest of my life (even though it's not something I like) as opposed to having someone cut into my brain and making everything go away.

Those of you who've had brain surgery, how on earth did you work up the guts to have it done?

 

[seizuregirl]

I did it because I wanted to be able to have a life again, be able to work, maybe drive (although I am scared of driving, especially in the winter) and do what I wanted when I wanted. And having 4 drs saying that there was 50%-60% chance it would work, the neurologist in my hometown, an epileptologist, a neurophyscologist, and a neurosurgeon at an epilepsy treatment center agreeing that it should work so I took that chance.

 

[CQ:)]

My old neuro suggested I look into having brain surgery back in late 2009 after trying me on my 5th med. None of the meds he had tried me on controlled my partial seizures & I was at the stage where although I lived on my own I had lots of restrictions, my main one was I couldn't hold down a job so I did a lot of volunteer work.

The specialists I saw in regards to the surgery eg epiologists, epielpsy nurse, neuropsych & surgeon were amazing. They explained the surgery, what was involved, the percentage that it would help control my seizures (I think they gave me an 80% chance). They also told me there was a very slim chance (like 1 % - 2% chance) that the surgeon could prick a blood vessel & I could have a stoke. They also made sure I was aware that the surgery is not a cure but another way to help control the seizures better & told me that I would most likely still be on meds for the rest of my life but they hoped to get it down from 3 meds to 1.

When the suggestion of surgery 1st came up I discussed it with my family, mainly my Mum & Dad as I knew if it was a big step & if I did choose to go ahead with it & something went wrong my parents would have to care for me. They were all for the surgery if it helped control the seizures better, I was happy to go ahead with it as well. I didn't care about driving, all I wanted was one day to get a stable job.

I did a lot of research on the type of surgery I was having & the specialists involved in the surgery. I spoke to people who had surgery & when I was going through pre surgery tests I met a girl who just had her surgery so she gave me some tips.

I actually saw the whole thing as a bit of an adventure & don't regret having the surgery which I had in March 2011. I was lucky enough to go 2 years seizure free until I started having focal seizures again in 2013. The seizures I have now are more like simple partials as I don't lose awareness like I used to & they dont affect my life like they used to. Because I am having focal seizures I am back to 3 meds (but lower doses then what I was pre surgery) & have some restrictions eg no driving but that doesn't worry me too much.
The main thing is I am now working full time at a place where I've been for 3 years now, I love my job & the people I work for are great. They are great about the epilepsy & when I walk down the back of the office to have the seizure (as I call it do my thing lol) or if I need time of for my neurologist ppts

 

[CQ:)]

I have a few epilepsy / brain surgery tshirts which I wear & some times they can be a talking point lol. Today I was looking around a shop & had a shirt on which said 'brain surgery, been there done that'. Another customer said excuse me & asked me what the shirt said. When I told her she said she has also had brain surgery but hers was a long time ago. When I asked when I think she said it was in the early 1990s & was only about 5 months after she got married (I never asked what the surgery was for). I said mine was only 5 years ago.

She said she'd never seen the shirts before & I explained I had it made up. She said well i think we are both troopers

 

[BIGMAN131307]

Those of you who've had brain surgery, how on earth did you work up the guts to have it done?

It was back in 2003 when my then Neurologist suggested surgery. I did the testing to see if I was a candidate. But at the time, I wasn't ready. There was many AEDs that were still available to try first. The thought of the surgery was scary. So I stayed the AEDs course. A few years later I found and joined CWE. I found a place where I can talk with people who were in a similar place like me.

Over the years here at CWE I found help and comfort. Which lead me to finally decide for a change in my health. So my big step came on 12/18/2012 when I posted: http://www.coping-with-epilepsy.com/forums/f41/looking-ahead-surgery-but-fear-setting-18981/
Through that posting I asked others experiences deciding about surgery. From the type of surgery, tests, surgery prep, post-surgery, recovery, etc. The answers and questions through those replies, helped me move forward. I felt I was doing the right thing. I had given AEDs (14 different meds.) a fair enough chance to work. Although I wasn't getting worse, I still wasn't getting any better. Many of the AEDs hurt me internally. I ended up needing to have my gallbladder removed. I now suffer from IBS & UC. Which are worse than my seizures were. If I knew the AEDs were going to cause me this much trouble, I would've had the surgery done sooner. Prior to my surgery I watched several medical procedure videos for VNS and Temporal Lope Surgery. These helped me understand what was going to happen to me. They gave me an incite on what questions I had about the procedure. I was able to get direct answers for all my questions and concerns from my Neurosurgeon. This made my family and I feel confident this was the right choice.

I was given an 80-85% good chance of being seizure free. My surgery was back in 2014. This Thursday will be 29 months seizure free (knocking hard on wood).

I keep my post http://www.coping-with-epilepsy.com/forums/f41/looking-ahead-surgery-but-fear-setting-18981/ updated with my progress. I also ask/answer questions along the way.

So far the only "activity" I have is headaches. I had headaches before my surgery, so that's nothing new. Even if the headaches are determined to be "seizure activity", I can live with them. They are less of a problem than the CPS I was having before my surgery.

If I had a chance to do it all over, I would. Before all the different AEDs could reek havoc on my insides causing IBS & UC.

 

[Porkette]

Hi valeriedl,

I was just a kid when I started having absence seizures and I would have about 300 seizures a yr. no med was controlling them, then I started having complex partial seizures and the seizures continued to increase, after a friend saw in the paper they were doing surgery I knew I had to have it done or the seizures were just going to make my life worse and I knew no seizure meds would control the seizures. I also wanted to get my license and get a better paying job, so I told myself it was worth the try and I knew the Dr. wouldn't do surgery if it was to risky. I was told from the beginning that the surgery would only reduce my seizures but to this day I'm grateful I had the surgery. I'm not as moody as I used to be, I don't get tired or have any headaches after a seizure and the seizures were reduced 50% if not more. I got a good paying job and when I do have a seizure many people can't even tell that I'm having one because most of them are short absence or a aura seizure. I had ultra sound surgery where I had to be awake for the surgery and they made me go through a lot of testing to make sure I could handle it, today they are doing gamma knife surgery which is same day surgery they just use high frequency radio waves to wipe out the problem and you can go home the same day as the surgery unless you get to much radiation then you have to stay overnight. Just ask yourself the question: Will the seizures continue and possibly cause more damage like it did to me. I don't want anyone to go through that. I wish you only the best of luck and May God Bless You!

Sue

 

[bka1212]

I was told by the time I was 20 that my epilepsy was intractable and i was a clear candidate for surgery/trials. I insisted I get through school at the time and have kids first.

After my 2nd daughter, less than a year later I started trials and testing. I KNEW it was one of those things that if I didn't do it I would always wonder.. " I wonder if they could fix me??" Going into it we knew it was a 50/50 shot that I could be at least semi-treated. after a double craniotomy, and a year of testing, they couldn't do anything. But I was ok with it because I TRIED. I didn't want it to weigh on me. I wanted to use every option.

So now, I know I will be on meds.. forever, unless some amazing new treatment comes out, in which my brain is fully mapped so I should be able to get into the study (per my amazing neurosurgeon!). Until then I experience partial seizures throughout the week but live a "normal" life unless I am sick, or something weird happens.

 

[txtiger]

Valerie,

I lived with complex partials for over 10 years before I even started to think about surgery. During that time I tried many meds and med combinations, most of which would work for a while then stop or had horrific side effects. I joined another online epilepsy support community and after a couple of years of reading about people seeing epileptologists with my neurologist always saying "there are always new drugs", finally got him to refer me to one of the epilepsy centers in our area. I was found to be a candidate for surgery and I decided to have it. I was told I had about 70% chance of no change, 80% chance of no more seizures, and 90% chance of fewer seizures. At the time, I was working in retail but working on getting certified to teach. I was blessed to have my parents' support throughout the process. I decided to have the surgery before I started my teaching career. I don't remember feeling like I had to get up the courage. I guess I just felt like it was something I had to try, and I'm glad I did. I do still have breakthroughs (all but one being simple partials), but after feeling them become more and more frequent, have become more proactive in keeping my doctor informed. He has said that long term, if the simple partials continue, we could consider another surgery, but I will cross that bridge if I come to it.

To answer your question, I don't think I had to work up the nerve. As I read about it, I felt like it was something I had to at least try, and I'm glad I did. I hope you decide whatever if best for you.

 

[valeriedl]

Thank you very much everyone. I'll be reading your thread soon Bigman, I want to do it when I'm able to sit down and read it all at once, it looks like it's pretty long.

I still don't think I'm going to work up the guts to have the surgery. Even if there is a chance that I could stop or have fewer seizures. Or get me off of my meds or just take fewer, I take a good many.

I had no problems having surgery on my spine. The surgeon told me that if I were to have a seizure during the surgery I could end up in a wheel chair for the rest of my life but at the rate I was going with the problems I was having I could have been in a wheel chair anyway. I think it's just because the word 'brain' is involved is what scares me so much about having the surgery.

 

[Cint]

Hi Val,

I had my temporal lobectomy way back in 1990. So at that time, there weren't many options available, drugs or otherwise. It was a total failure for me. I was only seizure free for 14 months and the seizures came back with vengeance for me. Not only did I have CP, but then I was having CP with TCs, too. So my epileptologist tried numerous other drugs until I had my 1st VNS surgery in 1998. The VNS has helped me much more than the brain surgery did. I've had two replacement battery surgeries since. But now my epileptologist is trying to talk me into going in and having a Deep Brain Stimulation surgery since I still have some CP seizures. I say Hell NO!! No more implants in my body. I can deal with just a few CP seizures a year.

So I think you're making the right decision to not have brain surgery. The VNS should suffice, IMO.

 

[valeriedl]

It's mostly my parents who will bring up the subject of brain surgery every so often. I don't think my husband ever has. I think my parents will think that I'll walk out of the hospital 'cured' as some of you put it. I won't have to take meds, get my VNS turned off and won't have another seizure again for the rest of my life. I don't think they realize that none of this could happen, only things that have happened with many of you. I could have no seizures for a while, just less seizures and might still possibly have to take meds one way or the other. Surgery could do nothing at all or might even make things worse like with you Cint, thank you for telling me about that.

When I told my husband about all of the things that have happened to some of you he was surprised. I don't know if he thought brain surgery would 'cure' me too but he knew I was afraid to have it, I don't know if he's afraid of me having it too, which is why I think he's never brought up the subject.

I've had a VNS for almost 10 years now, on my second battery, and it's helped me so much. Before I got it I was on a ton of high dosages of meds and having about 20 very bad seizures a month. Since getting it I'm having on average of 4 seizures a month, nothing even close to as bad as they were before getting it, and my meds have been reduced too.

I'm just glad when my neuro brought up the subject of getting tested to see if I was able to have brain surgery and I told him I didn't want it he just politely said "Ok, no brain surgery" and moved right on to another subject.

Thanks to everyone for your replies.

 

[Eli]

Good timing. I went to a new neurologist today. My old one moved the other year and the medical establishment hasn't been able to get a new one into our smallish town.

We drove to the city to see him. When the neuro brought up surgery I said no way, no how, no thank you. But now that I'm home and resting I'm thinking about it. I have a monthly average mix of 50-60 partial and generalized seizures. I've been dealing with this as a daily thing for over a decade and am so tired of it that I'm literally waiting to die.

Hopefully the responses here will give me some input. Thanks in advance.

 

[seagull]

If they told me I never get head ache again one associated with e and get my memory back then I run to operation other than that I be terrified but some people so desperate that only option I thankfully not at that stage
Some of stories I read in forums the operation far from miracle cure but some It been wonderful unfortunatly I read more cons than pros

 

[Music36]

Valerie,

My neurologists tried to talk me into surgery for many years. I used to have the attitude that no way am I having brain surgery. Then, in my early 40s, I started having memory problems that just kept getting worse and was scaring me. My epileptologist told me the seizures were doing brain damage and it could just keep getting worse. She also told me the seizures could damage other parts of my brain. So, I started considering surgery. Then, I found out about the MRI-guided laser ablation surgery which is less invasive and less risky than the traditional lobectomy surgery. I did my research and then called my epileptologist and said I'll do the laser surgery if I'm a candidate. I had the surgery June 2015 and I'm glad I did it. The surgery was successful. I don't have complex partials anymore. I just have occasional auras now. I had to go through a lot, but I would definitely say it was worth it.

 

[Music36]

Valerie,

I want to add that epilepsy surgery has come a long ways. Some people on here had their surgery many years ago. There's a lot of advances and doctors have learned a lot in recent years about the brain. They're doing surgery differently now then years ago.

Research is showing that there is less cognitive damage with laser surgery than a lobectomy. One reason is because they are not having to cut through all that white matter when you have laser surgery. I actually scored higher on some neuropsychological tests one year post-surgery compared to before surgery. My frontal lobe is working better now than before surgery. They say it's working better b/c I'm not having seizures. My surgery was on my left temporal lobe.

Another thing to consider is that each case is individual. So, it's a matter of what the chances of success and risks are for you. I met with my surgeon after it was determined that I was a candidate and he spent 1 1/2 hours with me explaining everything and answered all my questions.