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Has anyone had brain surgery due to epilepsy?

May have brain surgery...Need advice!!!!

This is the first time I have ever used this website, so please forgive me if I miss something.  So, here's my story...I am 31 years old.  I was diagnosed with epilepsy in 2004.  I have had a few grand mal seizures (around 6 or 7), but I have a lot of petit mal seizures (complex partial) - over 60 in 2010.  This has greatly affected my life.  I totaled my car in 2010 because I had a seizure while driving.  Thank God no one was hurt, including myself.  Needless to say, I cannot drive right now.  I also has several seizures at work, which put a stress on things.  I have tried many medicines (not sure of spelling), including, Lamictal, Keppra, Carbatrol, and others.  I have tried name brand and generic.  My seizures have not gotten better.  My doc is now recommending brain surgery, as a lesion has been found in my front temporal lobe.  It is currently not a tumor, but could turn into one.  I have not taken the WADA yet, but it will be scheduled soon.  I would love to speak with anyone who has had brain surgery and the results he/she has had.  Thanks!

Comments

Re: Has anyone had brain surgery due to epilepsy?

I had my left temporal lobe removed in '96, it was unsuccessful in reducing my seizures or reducing medications. But, it did create verbal-memory loss. I had a WADA test just before that operation. Another was performed again last Nov. 2110 at NYU's hospital in New York. WADA tests were OK with me; they insert a catheter in my groin area just above leg a medicine is put though it into artery to put one side of brain asleep to find out if your memory is on that side of brain. My bandage was off in a few days, other people need to keep it on longer. Whatever the amont of time you need, just take care. It could be seen at first, but; can't be noticed now.

Tim Baldwin 

Re: Has anyone had brain surgery due to epilepsy?

Thanks for your reply and your honesty.  So, to make sure I understand, are you saying the WADA test did not cause any harm?  To my understanding, the WADA test is nothing like surgery, but is the next step to see if you qualify for surgery.  Is this correct?

Re: Has anyone had brain surgery due to epilepsy?

That's correct!  The WADA is to help the surgeon's determine your speech center.  Most patient's is on the left side.

I have had 3 WADA's.  I have had 3 surgeries.  My speech center is on the left hand side.  I am also a Neurodiagnostic Technician.  I have seen patient's able to speak in both hemispheres.  

One hemisphere is sedated one at a time and you are stimulated w/ pictures and you are to verbally repeat what the pictures are.  While the proceedure is going on you are being recorded via an EEG machine.

The Neurosurgeon kept this in mind w/ stimulating the patient during surgery.  It also helped determine if the patient's seizure focus was near the location.   It is interesting but a necessary procedure.

Re: Has anyone had brain surgery due to epilepsy?

If you don't mind me asking, how many seizures did you have before these surgeries (daily/weekly/monthly)?  My main hope is that the Dr.'s will get an accurate diagnosis by the result of this test.  I'm a bit scared about having brain surgery (naturally), but since I have a lesion on my brain, and the dr.'s know where it is, it may be the logical thing to do.  Any thoughts/advice?

Re: Has anyone had brain surgery due to epilepsy?

Hi Peyton,

I had the surgery in '05.  I have been seizure-free since then and as of March 2010 I am also medication free for the first time since 1970.  I had about 50 seizures a year, mostly simple & complex partial, but I have had grand-mal (tonic-clonic), atonic, deja vu and auras as well.   My problem was left-temporal lobe most likely due to get hit in the head (Don't walk behind someone who is about to swing a bat). 

The Wada is not that bad.  They access your brain via the femoral artery (in the groin area), inject sodium amobarbital and are able to put one side of the brain to sleep at a time to see how the sides function independently. 

I had the surgery at NYU Langone Med Center with Dr. Doyle, who I highly recommend.  Make sure your doc has experience in the specific type of lobectomy you are going to have.   

Here is a detailed article on my surgery .  Hope it helps.  http://www.epilepsy.com/epilepsy/journal/issue1/surgery 

Ann

 

Re: Has anyone had brain surgery due to epilepsy?

Thanks for the reply Ann.  I will take a look at your article.  As for walking behind someone with a bat, I'll take your advice!  =0)

I'm glad to hear your surgery went well.  I am very greatful to receive all of the replies I  have, but as you know, not everyone has the same story (life).  As a result, thier advice is different.  I was hoping to get a 70% "go for it" and a 30% "don't" - or the other way around.  However, I have not gotten a clear picture yet.  My next step is to take the Wada on Thursday and see what the dr.'s have to say.  I'll go from there...

 

Re: Has anyone had brain surgery due to epilepsy?

my daughter just had the RTL for a lesion a few weeks ago.  It was not a hard decision because the meds were not working and she couldnt drive and her grades were dropping as a result of the drugs.  As she is right handed, and the lesion was on the right side, surprisingly, they did not perform a WADA test, which I was expecting that she had to have.  A google search showed that some centers are no longer doing the test.  You might ask about it.  Her outcome so far has been great and her prognosis is excellent.  Her only complaints are some headaches and fatigue.

Re: Has anyone had brain surgery due to epilepsy?

Thanks so much for the email!If you don't mind me asking, how old is your daughter - or perhaps i should just ask if she is in high school, college, etc.  I am 31 (will be 32 in May) and my life has been affected in many ways due to my seizures.  Like your daughter, I cannot drive (had a seizure in April 2010 while driving and totaled my car.  Thank God no one was hurt, including myself), my memory is getting worse and my wife says I am simply not the same person I used to be.  Not in a mean sense, but in a true sense.  Also, if you don't mind me asking, what meds was (is) she taking?  How has the healing process been? What has been the most difficult part?  Any information is greatly appreciated!  I'm suprised to hear that the Wada test is no longer being performed in some centers.  Being that mine is scheduled for tomorrow, I'll ask for sure why this is the case.  Thanks again!  Peyton

Re: Has anyone had brain surgery due to epilepsy?

She is 19 and is on three meds. None of them ever have given her any seizure freedom for more than a week or so. She was discharged from the hospital in 3 days. Main complaints were the obvious headache and swelling initially. The swelling was gone by day 6. She still has occasional headaches now, but she takes tylenol for that. She still tires easily but its only been a month. It was a scary ordeal but I'm amazed at her remarkable recovery. We were warned about the jaw hurting afterwards so she ate a lot of soft food for the first 2 weeks.

I was sure to select a hospital that had a busy epilepsy program that did a lot of resections.

Her prognosis continues to be excellent as her doctors give her >80% chance of remaining seizure free. The most difficult part was seeing my child in pain.

Re: Has anyone had brain surgery due to epilepsy?

Thanks for the info.  As I mentioned in my last email, I was scheduled to have the Wada this past Thursday, but it was rescheduled again for this coming Monday.  I will be glad when it is over.  It sounds like your daughter is doing well so far in the recovery process.  One think I have noticed is most (if not all) of the kind people who have replied to me have had surgery on their RIGHT side of the brain.  Do you know of anyone who has had it on the LEFT side, since this is where mine would take place?  And it sounds like you were very (are) very suuportive of your daughters surgery.  Mine are not whatsoever, and in fact, are giving my wife and I are a hard time.  I wish they were on board, but in the long run in it is my choice.  I know if would be a very hard recovery and I do not need a bunch of "told-you-so's," especially if something went wrong.  I need a "we're in this together despite what happens."  Anyway, thanks for listening.  PW

Re: Has anyone had brain surgery due to epilepsy?

Good morning Ann!  Thanks for showing me your article.  It had some great info.  In fact, you are one of the very few people (if not the first) that has had the surgery on the LEFT said of thier brain (at least who I have spoken with).  Most people have had it on the right side of the brain.  I wonder why?  Any thoughts/comments?  Any more info you can provide on your procedure is greatly appreciated - but again, I did read your article and it had a lot of great info.  Also, please let me know if there is anyone else I can speak with that has had surgery on his/her left side of the brain.  This would alsp be helpful.  Have a great weekend!  PW

Re: Has anyone had brain surgery due to epilepsy?

Peyton,

Drop me an e-mail at my user name, followed by   @ yahoo. com      I can forward it to a guy who had it on the left side 10 years earlier than I did.  He's also a patient of Dr. Doyle & Devinsky at NYU.  There is also another posting on this site of people who had it on the left side.    We are both sz-free since surgery and off all meds.

 

Re: Has anyone had brain surgery due to epilepsy?

Thanks for the reply.  I will email you soon!

Re: Has anyone had brain surgery due to epilepsy?

Yes.  I had a DNET tumor (benign) on  my brain stem and was diagnosed with temporal lobe epilepsy.  Was having intractible complex partial seizures as you are.  My body does NOT respond well to anti-convulsants (Trileptal landed me in the ER then ICU in a coma) and they knew they needed to remove the tumor as it was causing gliomas (pre-cancerous cells) to form in my amygdala & hippocampus.  I will be honest - I had the surgery 7/25/10, it was not too terribly painful, but the recovery has been incredibly difficult.  My surgery was two-fold though.  A temporal lobe resection with tumor & glioma removal.  They removed a portion of my hippocampus and over 90% of my amygdala on my right side.  I have difficulty with memory and processing emotions now.  Also, the temporal lobe resection piece of it (for me) was quite unsuccessful.  My seizure intensity has decreased significantly while the frequency has increased exponentially.  If I had it to do over, personally, I wouldn't.  I know that the gliomas would have eventually become malignant and killed me, but as it stands, I'm looking at having the surgery again anyway.  So I'm a bad example because my situation was a little more complicated.  However, a standard temporal lobe resection is generally something like 97% successful with minimal recovey time.  Go for it.  God will take good care of you :-)

-Ambra :-)

 

Re: Has anyone had brain surgery due to epilepsy?

Thanks for your honesty Ambra.  I have a lot of people praying for me, which I know is a huge plus.  I have scheduled to take the WADA this Monday, January 10th.  My prayer is that this test will show the best results, so that the dr.'s can help make the best choice - whether or not I need to have the surgery (need being the key word).  The whole idea is a bit scary, but the medicine has simply not been helping...

Re: Has anyone had brain surgery due to epilepsy?

I am definitetly going to do alot of praying for you peyton.  I was supossed to have just the brain surgery due to the seizures.  They however found an avm on the other side of my brain and said the had to take care of that first.  Now that surgery first and seizure surgery second, I continue to have seiuzres (those surgeries were 2005 and 2006).  However, GOD works individually.  What he doesn't do for me, he might do for you.  Pray on it.  He will lead and guide you.  grace and peace.  tavi28

Re: Has anyone had brain surgery due to epilepsy?

Thanks so much!  I need all of the prayer I can get.  I'm sorry you continue to have seizures, but I will pray for you as well.  I don't understand the human body - why there are so many diseases - except the fact that we are imperfect humans (animals, creatures).  This is the way we were created, but one day this will change, guaranteed!  If you don't mind me asking, what is avm?  I may have heard of it, but it does not "ring a bell."  Thanks again and I look forward to speaking with you soon!  PW

Re: Has anyone had brain surgery due to epilepsy?

So sorry I'm just getting back to you.  An avm is when there is an abnormal connection usually between veins and arteries that is usually congential.  It can occur in any location but mine occured in my brain.  The most general symptoms of avm is headaches and seizures.  So I was given a dilemna, did the car accident I had cause my head injury which caused my seizures or did a avm that they found later when approaching my first brain surgery due to seizures was originally caused by avm I had since birth.  But you know, years since, I have given so much to GOD, I can't go back no more.  My trust and faith is in HIM and my seizures will end in HIS time.  I won't give up.  grace and peace.  tavi28

Re: Has anyone had brain surgery due to epilepsy?

Thanks for the reply.  I am having my Wada THIS THURSDAY - it was going to be today, but the weather is bad.  It's good to know your faith has been strong durinig this time.  I have found it easier to take life one day at a day instead of living in fear of the future.  When I live in fear (which is still most of the time right now) my life is simply not worth living.  However, i try to live by the serenity prayer, which is of great help.  Thanks for sharing what avm means. PW

Re: Has anyone had brain surgery due to epilepsy?

I had Wada testing so long ago, I actually forgot what it was exactly like but I will keep you in my prayers for your testing on thursday.  It's good you don't live in fear.  There is one scripture I keep in mind.  I even used to write my scriptures on index cards because of having some issues remembering them (but GOD knows your'e heart).  I felt it in my spirit to give you this one.  Keep it close.  It is IITimothy 1:7 "For GOD has not given us the spirit of fear, but of power, love and a sound mind".  One day at a time is the direction to go.  I have been a christian my entire life but anger came upon me toward GOD after the brain injury.  I had become a hermit because I was living in fear (not wanting to embarrass myself and others) but GOD does not give fear to us.  And I'm not preaching to you.  I'm just litterally telling you what has kept me here.  HIM!  Fear had overtaken me, when I lost my job, ablility to drive, more seizures after brain surgeries but trust has remained.  So pray on things.  I'm so glad you got your wife.  I got my boyfriend and brother here with me.  No matter what doctors may tell you, trust GOD first and move in HIS direction.  I truly wish I would have prayed more before the brain surgeries.  That may have not been the direction HE wanted me to go, may have, but one thing I do know now, fear will not win!  grace and peace.  tavi28   

Re: Has anyone had brain surgery due to epilepsy?

Thanks for the encouragement - and the scripture.  I will keep it as a reminder this week. And I do not feel like you are "preaching" to me.  I'm glad to know your heart and what helps you through your struggles.  It has not been an easy time for me.  It has only been through the power of prayer, love and encourement of my friends and family that I have made it this far.  My prayer for us all is that we do not live in fear, but walk in the assurance of our salvation and HIS love.  Way easier said that done (at least for me). Talk with ya soon.

Re: Has anyone had brain surgery due to epilepsy?

Last Oct. I had one at NYU,it was easy. Just a catheter was inserted into groin area and was kept over the night for them to see if I looked OK. If I decided on having surgery somewhere else, they're want to do it there. Timothy Baldwin

Re: Has anyone had brain surgery due to epilepsy?

My Wada test went well.  Now I'm looking for the best Neurosurgeon.  Little Rock's (AR) resources are limited...

Re: Has anyone had brain surgery due to epilepsy?

Peyton,

I had surgery in 2003 and have detailed my experiences here:

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

I hope you find some answers to your questions.

Kevin

 

 

 

Re: Has anyone had brain surgery due to epilepsy?

Thanks Kevin.  I'll check out your story via your link.

Re: Has anyone had brain surgery due to epilepsy?

AWESOME story!  Thanks for sharing.  I also appreciate your humor!  =0)

Re: Has anyone had brain surgery due to epilepsy?

Hi Peyton, my wife had Temporal Lobe Resection in July of this year.  She has had epilepsy since a child and had her first full seizure at age 16.  Medication controlled her seizures quite well but had been lessening in effectiveness for the past 10 years or so.  Finally after not being able to control the seizures and having to quit working and driving we went looking for alternatives.  We wound up at the Mayo clinic (we live in Alaska).  Neurologists here had diagnosed her (via video EEG) with seizures focused in the occipital lobe and not a candidate for surgery.  MDs at the Mayo localized her seizures to the right temporal lobe.  She recovered well physically but the emotional and memory loss issues have been difficult.  Staying organized at home is proving difficult.  We have purchased iPhones that I am working with her on using it as a memory aid to help this out.  I am trying to get info on a program using PDAs done at a college in CA.  That program is for memory loss due to PTSD.  It is a slow go but she is learning.  Not having to deal with the seizures and the uncertainies and embarrassment of them has been wonderful for her.  We returned to the Mayo in Oct. and further EEG testing confirmed that there was no seizure activity and there were improvement in cognitive abilities as well.  The cognitive abilities were evidenced around the home even though they would be trumped sometimes by the emotional and memory issues. 

For us this was an easy decision.  We were warned of the memory and emotional issues.  Some of it was already apparent due to the effects of medication and the problems created by the seizures themselves.  One thing we were told at the Mayo that helped us make the decision was that there would be further memory and cognitive decline due to the seizures.  Yes, there are issues created by the surgery but overall it has been an improvement.  There are days where it is very rough as the emotions run rampant and memory problems compound the emotional issues.  If you have a significant other they need to be very much in the loop on this decision.  They will need help of their own to help you. 

Re: Has anyone had brain surgery due to epilepsy?

I don't think I have replied to your message yet, but thanks so much for your honesty.  My wife (Regina) is an RN at Arkansas Children's Hospital and she has been very supportive.  The biggest "stumbling block" is my parents.  My mom wants to play doctor all the time and my dad can simply be a jerk.  My parents are loving people, but they are having a hard time dealing with their emotions.  They have a hard time with allowing my wife and I running our own lives versus them still playing mom and dad.  I am having my Wada test done THIS Thursday and my family will be coming up Wed night to come with Regina and I.  It's a very fine line.  I'm glad things have gotten better with your wife.  I, too, am scared about memory loss and emotional changes.  My memory has gotten worse over the past 2 years and memory loss does not need to continue - but I realize it is a big chance.  Anyway, I could ramble forever...thanks for listening.