Debating Surgery

[thelmonk]

Hello everyone. I am having difficulty making a decision on whether or not to do surgery. I have gone through some of the steps and even had the WADA, I hated that by the way. That was the most frustrating and difficult thing I have ever had to deal with, that I can remember. I remember it so vividly, not being able to speak while knowing exactly the questions they were asking.

Anyway, I have been on Keppra since January and since then I have not had seizures. I used to have a whole day full of seizures, petit mal or complex partial seizures, once every month and a half. Now I am on Keppra, Phenobarbital, and Tegretol XR. My girlfriend and my family don't want me to go through with the surgery, because I have not had seizures for a while. Their rationale is that because the medication is working I should just stay where I am. I have difficulty with it. Being dependant on the medication as my only means of being seizure free, I don't feel comfortable. I feel as if the medication is a ball and chain. I feel I can't be independant. I would like to do the surgery and eventually be medication free, even though I know that is the best of many possibilities. My family cares for me and so does my girlfriend. I want to be able to move anywhere I want and to go to graduate school without the gorilla on my back, the medication and the thought that anyday I might have a seizure. I am ready to take any outcome, even if it means that I might have to continue to take the medication. I just want to try the surgery, if there is any possibility that I might be seizure free.

I lived the first 20 years of my life without seizures and the last ten have been intrinsically linked to my crutch of medication and the whim of seizures. Does anyone have any stories or advice based upon my dillema? Thank you all. I think this site is wonderful and I would hope one day, whether I am seizure free or not, to help the country and the world to understand what epilepsy is and the daily trouble we go through.

Thank you,

Ryan

 

[RobinN]

Certainly every situation is different.
My daughter has a "birthmark" that we were told by two doctors were the reason she was having seizures. She did not have any for the first 14 yrs of her life.

Medication was not helpful, and actually brought down the quality of her life.

She is med free, and remaining seizure free, while watching nutrition, doing NFB therapy, and making healthy choices in her life. She refused the surgery conversation, and I would never consider it prior to making sure all other paths had been taken.

I hope you find peace with whatever decision you make.

 

[Nakamova]

Hi Ryan, and welcome!

I understand where you're coming from -- I didn't develop epilepsy until my thirties, and I've resented every minute of being on meds since then. But from my point of view, having my seizures controlled by medication is infinitely preferable to the prospect of brain surgery, especially when medication may still be needed post-surgery.

I assume you've talked with your doctors about what the surgery might or might not accomplish. The link below gives a general summary:

http://www.epilepsyfoundation.org/about/treatment/surgery/outcomes.cfm

Have you considered less invasive means of seizure control, like neurofeedback, or changes to your diet? There's a lot of information on this site about those alternatives that I recommend you check out.

And good on you for wanting to spread the word about epilepsy. You're absolutely right, there are many misconceptions out there and a real need for education.

Best,
Nakamova

 

[Rhea]

I understand where you're coming from Ryan. I'm right in the process now. I go to a major east coast center this month, to consider for surgery. I didn't know I had E. until I was 44. I had them for years, and didn[t know what was wrong with me. Now, I find that I can't continue if there's even a chance of being seizure free, I will consider it. I don't know for sure yet if I'm going through with it. But, I would like to explore the options, and make an educated decision about it. You have to do what is right for you. Only you know how you feel. Good luck and I sincerely hope it works out. Keep us posted.

 

[Cint]

Hi Ryan,

I started having seizures when I was 22. They were CP initially. After 10 years of seizures, I had a left temporal lobectomy. I went through the WADA testing also, so I know it isn't a pleasant experience, but for me it was a "peace of cake" compared to the the lobectomy!! I was only seizure free for 14 months. Then they came back as CP and secondary generalized TC seizures. I now wished I would have looked into other options back then instead of brain surgery, especially if I hadn't had a seizure since January. After the lobectomy I didn't get to go that long without a seizure until I had the VNS surgery.

Here is an article on brain surgery from epilepsy.com:

Epilepsy surgery is major neurosurgery. Some risk is associated with it and there is some mild discomfort afterward. The recovery period varies for each individual. The hospital stay also varies, depending on the specific procedure performed. Most people can resume normal activities 2 to 8 weeks after the operation.

It is critical for the patient and family to have realistic expectations of the results of the surgery. After surgery, some patients become completely seizure-free and some have no improvement at all. Many people fall between these extremes, having fewer seizures or seizures that are less intense, or they require less medication. Most people who do become seizure-free after surgery must continue to take seizure medicines (though often at lower dosages) to prevent breakthrough seizures.

 

[Nakamova]

Ryan --

You might be interested in this article from today's NYTimes about a runner who had the surgery:

http://www.nytimes.com/2009/07/09/sports/09ultra.html?pagewanted=2&_r=1&hp

Best,
Nakamova

 

[thelmonk]

Thank you all very much.

The article in the Nytimes is both uplifting and frightening. That is exactly what some of my family and my girlfriend is afraid of. My girlfriend, who was once my wife, are afraid that if I undergo the surgery, will I be the same? They worry that I may be seizure free, but I will have segments missing. My doctor told me that, yes I may experience some loss initially mostly in short term memory. But, it is likely that my IQ will dip, initially, and then outperform what I now have. It is difficult. I used to have difficulty with some stuff in school. That is why I chose Lit and Philosophy. I could read on my own and then discuss. But there was/is sometimes a delayed or trodden path my mind works in. I used to take Topamax, and I believe that was a large player in slowing things. My family even says I have a much better utilization of diction. But I still am not who I once was. If there is a possibility that I may regain the memory usage I once had, I would be happy. I think the line in the article is profound, “I always thought epilepsy was my problem,” Van Deren said. “It wasn’t.” My family always worries about me. I have to send my parents a good morning and a Good Night text message. They worry and will call me if I forget some days. I don't want anyone else to undergo my problems. I want any problem I have to be just that, my problem. Anyway, thank you all for your input.

Ryan

 

[Meetz1064]

It is

hard for each of us to know what is the right thing to do for ourselves without a "crystal ball" around. But you have to do what you believe is right. Trust me, we each have our own respective problems........ I would KILL to have a couple of surgeries that I need to have, but can't because of my E.

That said, I would LOVE to have brain surgery, but I can't for several reasons. The main one being that I have all of my seizures in my sleep. And my t/c's are massive...they render me useless for days.

On the other hand, it has taken me YEARS to rebuild my memory banks--what I have rebuilt--and I'm scared to lose what I now have. Both my short and long term memories have been affected, so for me it's a lose-lose situation.

These are the things to realllllly think about Ryan. Would you be able to handle possibly losing the memories that you built with your family? I really don't remember going on vacations with mine. I don't remember most of my children's childhoods, and I'm only 44. I can pull some of it back by looking at pictures, but NOT THAT MUCH. THIS is the point your family and girlfriend is trying to make.

Sure, the pills are a pain in the arse. No disagreement there--we won't discuss how many I take a day, cuz it's well up into the double digits. BUT. Pills, exercise, diet. The latter 2 which you should be paying attention to anyway, and the Former which you'll be put on for other things anyway at some point in time (blood pressure, cholesterol, yadda yadda yadda).

OR......

You get the idea, I think.

YOU have to make the right decision for YOU, Ryan. No one else. Whether or not anyone else in your family likes it, the decision has to be right for YOU. But you also have to be well informed, too.

I wish you the VERY BEST of luck.

Meetz
:rock:

 

[Cint]

I think the line in the article is profound, “I always thought epilepsy was my problem,” Van Deren said. “It wasn’t.”

Whenever someone has a chronic illness, it ISN'T only that person's problem, it IS, unfortunately, the whole family's problem.

And like Meetz stated, even though she didn't have the surgery and I did, I too have memory issues. I see pictures of my children and myself and don't remember the event(s). Sometimes I don't remember having conversations with others. Or directions, names, forget words when trying to complete a sentence, or forget what I was just talking about. My ex used to tell me how unbelievable it was that I could NOT remember certain things. I cannot keep a job now because of the memory issue, along with seizures and the depression that accompanied me after the surgery.

The only reason I had surgery was because I was having seizures 4-5 times a day. I certainly would not have considered it if I hadn't had a seizure in 6 months! Sure, the meds are a pain, but who knows the outcome of surgery? Please think long and hard before undergoing the knife!

 

[Razman]

Please think long and hard before undergoing the knife!

Yes , think about it but let me tell you the positive side. I had surgery 25 years ago (back then is was not common) , haven't had a seizure since and hold a managment position in a $15 Billion corportation and still continue my studies in night school. Sure, there may be some difficulties with names or memory at the start but you can learn how to handle them.

 

[Melpier]

not a canadate

about 12 years ago I went through the phases but my seizures are not accesible. But I do now know I'm left handed and left brained which I hear is uncommon. If something changed and I was elegible today I would make an appt and go to Shand's ASAP. your family won't have a problem with it if you start having them again.

 

[Ruth]

Hi Melpier,

I am left handed and left brained, as well. Personally, I would not want to have surgery. It has worked for a lot of people. My doctors want me to have The Vagus Stimulator. I have chosen against that, as well.

Both might be better than seizures, but I cannot tell you what to do.

Welcome to our forum, Ryan. It was made out of love by Bernard for his wife, Stacy.

Ruth

Each person must make their own decision.

 

[Elaine H]

Hi Ryan

Welcome to CWE, I hope you get as much out of it as I have. I like you, didn't have a single seizure until I was 23, my epilepsy was supposedly caused by a scar on the right temporal lobe, caused by forceps at birth, stress from mum and dad's divorce was thought to have triggered it back in 1986.

I, like you, went down every avenue before contemplating surgery, I am also on Keppra, and to be honest, it doesn't really make much difference to my seizure control. I first had a Temporal Lesionectomy in Sept 2000, and I had nearly five wonderful seizure free years following this, passed my driving test, got a great new job, and life began!!! For some reason, nearly five years later, my epilepsy came back to haunt me, I rarely had any problems with Tonic Clonic seizures, it was mainly Simple and Complex Partial Seizures, nobody could explain why it came back again, but it had, and I had to get on with it. I went through various drugs again after this, none made much difference, I like you, went through long spells of being seizure free, then it would come back again, stress is the worst factor in my epilepsy, how about you? Last year, June 2008, I had my right Hippocampus removed, and although it hasn't completely stopped my "wobblers" it has greatly improved things, although now, I don't get any warning before I have any type of seizure, pretty damn scary! I still cannot get a job, and I'm of course, still not driving.

I have to say after reading your entry, if you feel that you want to think about surgery, it's got to be your decision, I was lucky to have a lot of support, I had lost several jobs due to ignorant stupid employers, and I had nothing to lose, as I said, my seizures are greatly improved, and I just know that if I can just get a job, and get back out into the real world again, I'll be fine, I am currently unemployed, skint, and pretty well unhappy at the moment, I lost my dear mum a while back, I'm going through the dreaded menopause, and as I said, I'm unemployed, so I have a lot of time on my hands, to sit around thinking, and worrying, God, the worst things anyone with epilepsy can do!!! I just know that I will be a different person, if I can get back into full time work, if this country ever gets back on it's feet and out of recession, I may well do!

I can understand your family having woriies about surgery, it seems such a big step eh? but what they can do these days is amazing, and if someone said to me, that there was another operation that may help, I'd go for it, I asked the doc if he would put a zip in last time!!! Don't worry about the memory, I like you, have appalling problems with my short term memory (Right Temporal Lobe) it hasn't got any worse following two lots of brain surgery, like you, I was worried that it would be worse, I just keep a daily diary where I write everything down, it's good to flick back through and see what you've been doing, my memories are all in there, they just need coaxing out now and again.

I, like you am keen to raise awareness of epilepsy, I've just finished four years studying epilepsy care and management with Leeds university, finished writing a book on my experiences with it, and have given a lot of public talks on it, including The House of Lords in London, and The Commonwealth Institute, also in the capital, I have written articles, and done a lot of radio and tv, so I would encourage you to go for it!

Ryan, please ask me anything you want to, and if you decide to go for surgery, I'd back you all the way, I know what you mean about the drugs being the proverbial weight around our necks, I have recently had to increase the Keppra to 1500mg am, and 1,000 pm, and I also take Trileptal for the auras, and Simple Partials. I'd love to hear from you about what your seizures are like, and what a typical one is like if you wouldn't mind telling me?

I hope you enjoy hearing from people worldwide on here, I have always thanked the day that I came across this website, I hope you get as much out of it too, and that I hear back from you in the near future?

Very Best Wishes

Elaine

 

[KelVarQ]

Surgery

Hi Ryan,

Like you my seizures didn't start until later and ultimately got worse and meds no longer worked for me. Anyway, I like you didn't want to depend on drugs and opted to have the surgery (RTL). I too had the WADA test and personally I thought it was pretty amazing to literally be functioning on 1/2 a brain. My thoughts on the subject (for me and I realize everyone is different) is:
1. I would ABSOLUTELY HANDS DOWN do it again.
2. The recovery was difficult (however, realizing now it was the side effects of the meds (newer meds after surgery Lamictal & Keppra) that caused me so much anguish than the brain stuff. Only a few months prior to surgery did I try the newer meds. So, it was the physical aspects from the meds as well as the severe mood swings (perhaps Keppra w/ the mood stuff): bruises, losing hair, acne, severe weight loss and insomnia. (NOTE: I think if I had been on the older meds: Dilantin or something I would have been fine considering that never caused me physical problems only the cognitive slowness which I would've expected). Meanwhile all the above problems I had after surgery are clearly side effects of the newer meds, which I'm realizing today (see below).
3. Everyday does get better.
4. My memory after surgery was never better! Tell me something I will remember forever! However, the visual memory (think pictures in your mind) is pretty much gone since that was the problem area that they removed and it wasn't all that great anyway since it was the problem area, but I say thank G-d for technology).
5. I was seizure free for 4 years and they took me off meds after one year (which is early since they like to wait 2 years but I ended up below 100lbs.).
So I just recently started seizing again (only in my sleep) and they're not NOT gran mals or nearly as bad as they were. I opted to go on Keppra and I've already taken myself off (reminded me of my recovery and that's how I know it were the meds that caused recovery problems NOT the brain surgery itself) and would even go for a 2nd surgery, but docs don't want to do it and would prefer to play with meds.

So, my point is that the surgery SOUNDS so much worse than it really is, although I know everyone is different. For me, YES the recovery was tough BUT I got through it and looking back I would do it again and do it again today if they would go for it since I truly HATE being medicated! My advice would be, if you choose to go through it, make sure to take a medication (afterwards) that you can tolerate. I didn't know I couldn't tolerate at least Lamictal and Keppra since I only tried them a couple months prior to surgery. Had I went on Dilantin my guess is I would've recovered maybe just a couple months since I felt fine after surgery and I only stayed in the hospital for one day after. My choice and my doc said fine since I was up and moving and FINE! Yes, today my seizures are back but not NEARLY AS BAD or as frequent and that doesn't happen to everyone. There are many who go on forever without another episode. Anyway, sorry so long and GOOD LUCK with your decision. Should you have any questions please feel free to contact me. Kelley