Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Personal considerations for surgery

Hi! I am trying to understand the pros and cons that people have considered while trying to decide whether to go through with epilepsy surgery or not. Not the pros and cons your doctor would state but your personal ones. I would appreciate if you could share your experience! Thanks!

Comments

Pros: the chance at a cure

Pros: the chance at a cure for epilepsy, the chance of being seizure-free or reduced seizures, the possibility that your epilepsy could worsen and get to the point that surgery is not a possibilityCons: the ordeal of having to go through brain surgery, the possibility of complications, the possibility that you could go through it and not be one of the lucky ones who become seizure free after, the possibility that you could be seizure free, but now have depression or memory loss or cannot drive because of a visual field deficit, fear of the unknown.

procedures have to be done

procedures have to be done before they ever look at surgery.In that process you may not be a candidate for surgery 

I'm trying medication number

I'm trying medication number 16 now; not because I am hopeful that it will work.  Instead I hate to think that maybe one of the untried drugs out there will stop my seizures with little or no side effects.  In one way it's too bad that no drug works, but on the other hand it is comforting to know that what I deal with is the best I can get from drug therapy.  The same holds true with surgery.  I had tissue removed from my right temporal lobe in 1993, then in 1999 I had surgery to have VNS therapy.  The operation in 1993 did not stop the seizures and had little effect.  VNS didn't stop the seizures, but it did change how quickly I recovered from them.  Despite the fact that I still have seizures I'm glad I went through the procedures; otherwise I would still be wondering, "should I?"  One thing that the epilepsy clinic required for me to have the surgery in 1993 was that I "fail three mono therapy drug trial".  That meant that I had to try one medication at a time and go through seizures and uncomfortable side effects to prove they were ineffective.  It wasn't pleasant but I kept track of it all and am glad that I have record of what does not work.  I have greater control of my treatment now because I can tell my doctor what works best for me.  I will still bow to a doctor's advice once in a while to try another drug, but how I respond to each treatment goes onto my spreadsheet at home and gives me more comfort when my current treatment is not 100% effective.  I'd say if your epilepsy is disabling enough it would be comforting to know if there is better control than drug therapy.  You have to try it to find out.Ask doc about the various surgeries available; know your options.

I've been doing the trial and

I've been doing the trial and error thing for fifty years.  What it has proven is that my condition will never be completely controlled by drug therapy.  I am thankful that I have kept a good log of all my seizures and medications tried.  I am sure what treatment works best for me and I am able to convey this to the many doctors that come and go.I heard a doctor speaking at an Epilepsy Foundation conference say that, "treating epilepsy with drug therapy isn't like playing the lottery where the more times you enter the better your chances of winning.  But with epilepsy the more drug therapies a patient tries and fails to gain control with the less likely the condition will ever be fully controlled through drug therapy."  Surgery is a gamble, but for at least 25% of us it more likely to produce satisfactory results than just spending a life trying different drug therapies.  I'm sorry that surgery is not an option for you just joe. Just joe I'm curious, does your scar tissue in both lobes make you just unqualified for resection and laser ablation surgery?  Does it leave you also unqualified for RNS?  My doctor said that my scar tissue from a previous surgery will just mean they will have to place wire leads in from a different direction.

Hi hp:So it comes down to

Hi hp:So it comes down to your neurosurgeon. In my case he didn't hold back any of the cons, he just broke them down in terms of probability and post surgery options. The pros and cons come down to things like where in the brain surgery will take place as in other significant functions that might be nearby. In my case it was language and speech and memory so I definitely had to gear myself for very probable challenges post surgery. Post surgery I underwent Speech Therapy because after realizing how close surgery was to that function, well, that was a given. And, yes, memory also became an issue, things like "word finding" and a few other memory things.Luckily I was able to be in the hands of a great Speech Therapist who walked me though strategies that made it easier during recovery. I say easier because it was a challenge; just not as challenging as it could have been had I not developed the patience for it. I was also diagnosed with something called "Aphasia" which involves the processing of writing and speech be you the writer and speaker or the reader/listener to writing. Aphasia comes in two forms. I was on the "speaking and reading" side with a touch of the "listening."   For anyone who will be undergoing surgery extremely close to language and speech, there is one particular note to take. That said, it's nothing to fear if you know about it. If you don't it can freak you out. Post surgery I had extreme difficulty reading a simple short sentence in the next few days. Heck, I had difficulty pronouncing a simple word that was about three syllables in measure. That said, my neurosurgeon made it known to me right away that while it seems scary it isn't as scary given I had just undergone surgery. He explained that reading involves back and forth processing between two separate areas of the brain; sort of like pool when you hit the ball off the side of the table and it comes back to make contact with the other ball you are trying to sink. Surgery can interfere with that back-and-forth. As a result, a simple thing like verbally pronouncing a single word from reading involves information being initiated in one area, sent to another area, and then re-sent to the initial area before you can verbally sound it off, unlike simply talking because you talk. Reading is totally different. As a result, post surgery for me was short term difficulty with that. Felt like you were in the reading basics class. That said, it won't be long term as long as you make sure you are practicing. And that I did. It was the same with my vision. Because surgery was on the left side, I had difficulty clearly making out letters or objects as I looked to my far right. Looking to my far left was relatively okay. As a result I also, at times, had some challenges walking too fast because I was missing out on a few things on my right. That said, with practice, that also eased.So neurosurgery is about being practical about how the brain works relative to what areas might be affected. My neurosurgeon was extremely practical with me. No hiding information. No setting expectations away from probable cons. That's the kind of neurosurgeon you want. One who is practical. He also reminded me that as a patient, I also had a role to play post surgery, and that it was not, in my case, going to be easy. As a result he reminded me that I would have to develop a certain amount to patience; that recovery wasn't going to be a one-week gig given the specifics in my case.So it all comes down to each case, and of course your neurosurgeon. As a result my advice to you is ask as much as you can, especially in regards to the mapping of your surgery area. If the neurosurgeon is like mine, he or she would have no problem being really practical with you by showing you the Scientific specifics. One more thing. Pros and Cons are broken down in terms of probability. As a result, let's say the neurosurgeon says; "There is a 10 percent chance of this happening" make sure you ask him or her to put that "10 percent" in practice by drawing a parallel to some other everyday thing that is "10 percent" yet it might not have gone wrong. So parallels also matter. Wrong sounds loaded. But in life a lot of things outside of surgery are still prone to go wrong yet they don't necessarily happen. So perspective. That will help you better assess your pros and cons.

P.S. Might not have gone

P.S. Might not have gone wrong as readily as it may sound. After all, things can always go wrong.

I am getting ready for

I am getting ready for surgery at this time.  My first surgery is scheduled for November 5th to pinpoint the focal point and then about 4 to 5 days later, I am having the surgery to actually take the area in the brain responsible for seizures out.  I am having surgery for the possibility of being seizure free.  I have intractable left temporal lobe epilepsy.  I have tried so many medications. I have not been able to drive in about 13 years.  Not being able to go to sporting events for your kids, not being able to drive, not being able to go get something at a store on your lunch break, and mostly losing your independence.  I was told by my doctor that I will lose some bilateral vision.  At this time, I do not have any short term memory, I think one word and a different word comes out of my mouth.  I cannot pronounce words anymore.  To me the surgery is worth it.  My seizures have gotten worse as I have gotten older.  I want my quality of life to improve, not go downhill.  I know that my seizures start from around the language and short term memory region but for me the surgery is worth the try.  In the end, you have to make the decision. But I do believe having seizures gets worse over time so if surgery is an option, I would say go for it.  

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P