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Deciding on surgery

Help, I am very confused. My daughter is 11 and has partial complex seizures. Her seizures occur primarily at night and last for 1-3 minutes. She has these seizures in spurts of 2-4 every 3 weeks. Hopefully you are following me so far. Anyway, the recommendation is surgery on the right temporal lobe of removing a tumor the size of a plum. We are currently scheduled for July 16th. My confusion lies in the question of is this to aggressive? Being someone that has never had a seizure and having a daughter that is always with me when she has a seizure, I struggle with this decision. I know she will not always be in my house but i still struggle with the whole brain surgery issue. I love my daughter and I am sure I am over protective and do not want to let go. Is a seizure a seizure no matter the intensity or frequency? Is the affect on quality of life the same regardless of the intensity?

Comments

Re: Deciding on surgery

I, myself had seizure surger, right temporal lobe, partial complex seizures. None of the medicines helped and surgery was the only out. I'm glad I made the choice. I'm now getting off all meds and look forward to never having a seizure again.

Good Luck

Re: Re: Deciding on surgery

Thanks for responding. Were you old enough to decide on your own? Were you seizures similar in intensity?

Re: Deciding on surgery

While not for a tumor, I had right temporal lobe surgery just over 4 years ago. My experiences and thought process leading up to the surgery are outlined here:

http://users.eastlink.ca/~kehoe/

I can see 2 ways to look at the intensity/frequency of the seizures in making your decision....

1. Medical:

What are the risks of the surgery? What are the risks of continuing seizures, both immediate and cumulative? How well are the meds working and what are the side-effects like? Might a medication that's currently working lose its efficacy in the future?

2. Socio-economic:

Sadly, with epilepsy, this is often more significant than any real medical consideration. The public doesn't make any distinction based on the intensity/frequency of siezures. You "have" epilepsy or you don't, and that has far reaching consequences, some real and some foisted on us by society. From that point of view, a seizure is a seizure, whether it's a sub-clinical that happens while you're sleeping or a tonic-clonic at the mall.

And let's not talk about making the public believe in the "invisible" part of epilepsy, like sub-clinical seizures, medication side-effects, post-ictal periods, etc. If they can't see it, it doesn't exist.

I don't mean this to sound pro-surgery and I'm certainly not claiming it will "cure" any ills, but it's definitely more and more mainstream, despite how scary it sounds.

Hope this helps.

Kevin

Re: Re: Deciding on surgery

Kevin ,I'm really glad to see that you're doing so well. I think i'm in the same area you were a few years back. If you have time send me an e-mail marinebratt5271@yahoo.com Thanks, Brenna

Re: Deciding on surgery

My daughter is now 17 and just had surgery a few months ago. The area she had removed was deep in her brain and hard to locate and she went through extensive testing before and while in the hospital. I don't know all of your details, but if there is an easily accessible tumor that can be removed, I would not think surgery would be too aggressive of a choice. My daughter has suffered through various kinds of partial complex seizures since she was a toddler. They became progressively worse as she grew up and hormonal changes really made them worse. They were during waking hours, then she started having secondary generalized seizures in her sleep. Then this last year, all of her seizures have been nocturnal. She had full tonic-clonics sometimes, but mostly partials. Meds would not control them. I can say that it was very rough for a 15-16 year old in school to go through this night after night. Eventually, the seizures took a toll on her memory and other cognitive abilities. Her sleep pattern was constantly being disturbed by the seizures, add to that the meds and the after effects of having seizures and she was simply exhausted all the time. All she wanted to do was sleep, but sleep brought on more seizures. Surgery was an option, but there were no guarantees. Hers was successful and we are still in disbelief. I can't imagine how she would feel if it had not worked. But she wanted it very badly. Her seizures were making her more miserable that I can understand without going through it. And no, I don't think a seizure is a seizure. A small partial in the night would make her tired... a tonic-clonic would make her vomit, give her a massive headache, sore tongue from biting it, sore muscles... I guess what I'm trying to convey here is "we" could have lived with the seizures she was having when she was younger, but as she has aged things got much worse. I wish surgery had been available for her years ago so she could have enjoyed more of her teen years. Learn as much as you can about the surgery you are considering and talk to your daughter. There were several times I felt like I might be pushing my daughter to have surgery and how would I feel if it didn't work out or something horrible happened to her? But it isn't a decision a child can really make on their own and they look to their parents to help them. It's definitely harder than taking a risk on yourself.

Re: Re: Deciding on surgery

I'm brand new to this so please bear with me. Daughter has fought grand mal seizures for 8 of her 23 years - hard enough to be 16 years old, much less start having seizures. Medication has peridoically worked well, and then failed - usually when stressors aligned themselves together to beat down her threshold. She barely got through high school, then did great in community college. Now is at campus and not doing well at all. Depression got a firm grip on her in the fall, and she had several seizures in Oct and November. Then did better, had one in Feb and we thought she was really on the upswing, until Mothers Day - she had 4 in the same day - a record! Her neurologist is suggesting a surgery evaluation. Her EEG is showing some seizure activity - a sharp wave - its not ever shown before. She is afraid to consider surgery. I am afraid to not consider it. I believe my daughter fears a personality change, that she will lose something about herself if they do surgery. Can anyone speak to this? Any advice on how to help her get comfortable with the idea would be helpful. I know every mother out there wishes it was themselves instead of their child having to go through this. Thanks in advance!

Re: Re: Re: Deciding on surgery

Well, I would say your daughter is being sensible to be worried about the possible after effects. However, part of the surgery evaluation is to determine the likelyhood of negative results. If your daughter goes through the evaluation the end result may be that it is impossible for them to do surgery on her at this time. In surgery depending on where the seizures come from there could be after effects. The after effects could range from mild to severe depending on the area. One could be a more negative effect such as speech problems. There are also possible positive effects. One of which is no seizures possibly. It is also possible to have no or minimal change in the seizures. When I went through surgery I came out of it with difficulties in speech, reading, and writing all of which were gone in a few months. I have permenant aphasia. I am partially blind in my periferal vision. I had severe hallucinations for almost six months and was told it was a fifty/fifty chance that they would go away, thankfully they did. I also stopped having seizures and was able to go back and finish college. Looking back I am happy I did go through with the surgery. I was having numerous seizures daily and going into status weekly at the time I went through surgery. But I think that a person needs to investigate and weigh the pros and cons before deciding either way. One thing, if you would like your daughter to start the evaluation point out she can back out at any time along the evaluation, which usually takes a while.

Re: Re: Re: Deciding on surgery

I recently had surgery and I just turned 25. I've had surgery since I was 12yrs old. I understand it's a big step but it's worth it. I thought about it very carefully and I'm glad I did it. My surgery was recently May 14th and I'm currently recovering. Feel free to e-mail me with any questions. I would love to speak with you.

Re: Re: Re: Re: Deciding on surgery

Hi there --
My 5 year old daughter is scheduled for a temporal lesionectomy on July 19th. She has focal cortical dysplasia which is causing her complex partial seizures. They plan to resect that area. Surgeon feels he can get it all without consequences to her -- it is mostly in her anterior temporal lobe. We feel very fortunate that we have this option for her. Surgery is a scary prospect -- but if you trust your medical team and she is a good candidate, you need to really consider it.

Are we scared? You bet. Have we been up and down an emotional rollercoaster making this decision? Absolutely. But, we are at a place where we know this is her best option at being seizure free or greatly reducing frequency and duration of the seizures.

Good luck to you in making this decision. Please everyone send positive vibes our way on the 19th if you could. Congrats to all of you who have had successful surgeries...you are an inspiration!

Re: Re: Re: Re: Re: Deciding on surgery

To Laurensmyprincess -- My son is about to turn 6. He's had complex partials for the last 2 years. We have begun the path towards surgery and are waiting on the Cleveland Clinic to get back with us regarding next steps. If you care to email me, please do at schieratwins at sbcglobal dot net

I would be curious to "compare" stories.

Take care,
Nancy

Re: Re: Re: Re: Deciding on surgery

I hope you recovered very well. 10 years ago, I had my surgery, and I recovered very well. {I was 30 years old at that time} Today, I am still seizure free, and I am driving. Where did they do the surgery? I had it done the lower temple right side. Feel free to e mail me any time. tracetheangel@bellsouth.net. Have faith, and keep yourself stong.{donot get upset over everything. Remember this so you don't end up back in the position before the surgery}. Tracey

Re: Re: Re: Re: Re: Deciding on surgery

im having rtl surgery in a couple of wks. ive talked to people on the subject who have had it done. but i am still curious about it. how was your experience before, during and after? thanks

Re: Deciding on surgery

I am currently waiting for

I am currently waiting for surgery on my right temperal lobe. I was diagnosed 5yrs ago but not treated until last December. my neuro wanted to wait until the last minute knowing these drugs are so strong, to be sure these were seizures. I have failed 4 medications since then. I out of the blue developed seizures at age 32 after my second baby was born. I can understand what your going through. Because I see what Im putting my own family through. It is so hard dealing with the side affects to two kinds of medications and with some occassional break through siezures my family can only begin to try to understand but try and be a little girl and express that feeling. I was having 5 (partial seizures) a day. I cant be a mother to 2 little girls, and a wife, and be on all this medication let alone function. So there was no decision I needed the surgery. Do what you feel is best for your daughter. It will be the right decision. Good luck!

Re: Deciding on surgery

Hello there- I had a right temporal lobectomy in March and had a brain tumor 2cm in diameter removed about 6 years ago. I was only having partial complex daytime seizures about once a month and have been seizure free since the surgery- they were also able to finally put my mind at rest about my stupid brain tumor! I am only 26 and my seizures did not start until I was not 19- I would love to hear how your daughter is doing- hopefully wonderful asI just realized this post is wicked old! The Drs always told me taht I had a better chance at seizure freedom because I had a leision- as they so presiously called my tumor- involved. I hope the swelling has gone down and your little girl is good to go! Best wishes! I've had 2 and well - gum has been helping me with my jaw these days still! Take care!
Amanda

Re: Re: Deciding on surgery

Hello everyone,
Just wanted to let you know that my daughter (5) had a left anterior temporal lobectomy on August 30th. She is doing fantastic. If anyone wants to know more or is looking at surgery option for their children, please let me know. I am happy to help with our experience. Take Care.

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