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Information on left temporal lobe surgery - can anyone give me any information on it?!

Hi everyone,

i know this is pretty similar to a few other posts on here, but i just wanted to know if there were people that could give me some information/advice on the left temporal lobe resection that i'm having in the summer. Basically this is my situation:

I'm 19 years old, and it all started with febrile convolsions when i was about 18months. Then nothing until i was about 7. Then every since then I've been having these focal partial seziures, mainly at night, two or three times a week. I've only every had the one grand mal, and that was when i was about 9. I've gone through about 5 different meds, all with no respose at all. When they suggested surgery over a year ago, I was speechless for about a week, as i never thought i was severe enough, but it seems i'm the perfect age, perfect this, perfect that.... So basically yeh, its pretty much all go in the summer, just awaiting a date. The scans showed scarring somewhere on the left temporal lobe, and i believe what i'm having is a left temporal lobe resection.

I was wondering if there were people in a similar situation, or that could tell me a bit more about the op, what is involved, recovery times, just general stuff. Obviously the surgeon's told me all the major details, but what he can tell me and what you guys with first hand experience can tell me are two different things!

hope to hear back from people soon

love Emz xxx

 

Comments

Re: Information on left temporal lobe surgery - can anyone give

Hi Emz

I'm also new to this forum, but I am the mom of a recent Left temporal lobe surgery patient. She is 5 weeks post op today! She is 26 and had partial complex seizures since 16. She's been on at least 5 different meds, and was still having seizures on Lyrica and Topamax. We also were scared to consider surgery, but, I have to tell you, it's been the best thing we ever did!! Her Neurologist and Neurosurgeon said she was a perfect candidate too. She made it through surgery fine and was home in a couple days. She was in ICU over night, then in a reg. room for 1 day. No memory loss, no speech issues except for a few "word finding" problems, but most importantly NO SEIZURES!! She was having more seizures than we even knew. The testing pre-op showed focal seizures during sleep that did not show till they did the depth electrode placement. She was having them nightly. She is sleeping better, feeling better. The dr. says if no seizures in 6 months, she can drive again! WOW!

I know it's scary. Believe me, I know. I can only tell you that so far for us, it's been the best decision we've made together since she started having seizures. The surgeon we had was AWESOME. We believe she is/will be seizure free and will have a new lease on life.

It is not as painful as we expected. Stay on your pain meds as they prescribe. They were able to place her incision behind her hairline. You cannot even tell she had surgery only 5 weeks past.

You CAN do this. Lot's of prayers and finding the surgeon you trust is vital. I seached the internet and read and read about this for months. Ask your surgeon if he/she has other patients you can talk with. It helped us immensely!

Good luck dear. I believe this will work for you.

Mamasaw

Re: Information on left temporal lobe surgery - can anyone give

Hi Mamasaw,

congratulations, thats great news!! and cool about the driving too! i know its only an insignificant thing, but sometimes its just a nusience! i was offered that depth probe test, but the surgeons said that it wouldn't come back with any significant results that would effect the end result, so i'll never know whats going on in the depths of my brain....

yeh, my surgeon that we met is really lovely (and i noted that he's got little hands as well which is a bonus!), and thats a good idea to ask him if theres people he can put me in contact with. tahts partly why i registered on here as well. 

Thank you very much, it all sounds really positive :)

much love

Emz xxx 

Re: Information on left temporal lobe surgery - can anyone give

im assuming this will be posted to a page.Im now facing the decision time for surgery,i am so supported by my family,have had numerous tests,hosp. stays,met my surgeon,but still i am struggling to make the decision.I have left temporal lobe epilepsy.This became an issue about 5 yrs ago ay age 21.I took epilem for 2 yrs without much success.I was weened of that and put on Lamictal.I felt pretty off for 1 wk,i took as a sign that it was working,Over the next 10 mnths my seizures only happened once every 3 mnths.Then my pattern of 1 complex partial a ftnite and 3 simple partials a wk returned.Increased the dose,no success.then added keppra.1 yr later they got much worse so i begun searching for other ways to treat it.So now that ive completed all my tests and visits(this took 1 yr all up)My seizures have been less frequent than they have been in years,as great as that may sound,i am ready to make the decision for surgery and as my seizures have backed off so much i am still unsure.they havnt been this well controlled in 2 yrs and my simples(auras)have also dissapeared??.My 1st complex partial  in 5 wks was yest. I meet my surgeon again next wk.I am so happy to hear such successfull results from ppl who have actually done it themselves.

Re: Information on left temporal lobe surgery - can anyone give

Hi!

I had right temporal lobe surgery done in Aug. '07 and have been seizure free since. Well, up until a couple of weeks ago. I had one. Only because I was off my meds a couple of days. I take Keppra and Lamictal.  Other than that one incident happening, surgery was the best decision that I had made. I have complex partial seizures and was having at least 3 to 5 a month.  Although I am still on meds. I knew that I would still have to take them regardless, which is not a problem for me. I am very happy about the decision that I made to have surgery. It worked wonders for me.

To Mamasaw: please respond

Hi Mamasaw.

First and formost, CONGRATS ON YOUR DAUGHTER'S SUCSESSFUL RECOVERY!  I myself am a 26 ( I will be 27 on August 2 next Sat.) year old female who  has been condidered a "perfect" candidate for surgery. Unlike your daughter's i did not have my first seizure until August 2005, just a couple weeks after I turned 24. From 2006-2007 I would have a grand mal seizure every 2 or 3 months, with my last one in November 2007. Even though I have stopped having convusions and having to go to the ER, after I  was put on Lamictal, I am having the petit mals ( eye twitching, loss of my surroundings, speech and memory problems, and lip biting during sleep, and even nightmaires) right around my periods every month. I have been  seizure-free for the last two months after I was put on 2000mg. of Keppra a day, plus 500mg. Phenytoin, and 500mg of Lamictal. I did however, have a very small one in my sleep, but I found out that I had fallen asleep early and missed my evening dose of my meds. My doctor's can't figure out why just that one missed dose can cause one, which very rarely happens, when it took me a whole week w/o my meds when the doctors tried to induce a seizure while I was having a Video EEG done on me, before I ended up having one. After several tests and 3 anti-convulsants, with no success, I have decided to find out about the surgery. I have been on the waiting list for surgery since November 2007 and just had my WADA Test this past June (2008).  Two weeks ago  I got a letter for an appointment with the Neurosurgeon on Friday, August 1 (the day before I turn 27, a pretty cool b-day present huh? =) ) Therefore, I should be able to find out whether or not I can have  this done.  In the last 3 years every Neurologist, Eptologist, and the neurosurgeon who will be performing the procedure has been very nice have been very helpful to me, which gives me complete convidence in them. I was told that if my recovery periond goes very well with no complications I could be back to work and be able to do everything that I love to do. I still will not be  able to drive for at least another year because the state of West Virginia requires that you need to be seizure-free for 1 full year.

I am so glad that I ran across your post so close to the time that I will be making my final decision  and the fact that your daughter and I sound so much alike, especially in age, I feel so much better and confident in this whole procedure. The last 3 years have been very long and stressful for me and my family (espeially my OWN mother) and I feel  that we will finally be able to get some answers. Please e- mail me with any other information  that you or your daughter can provide me at any time my address is: ahardway81@msn.com.

Once again, God Bless you and best wishes to you and your daughter.

Anna.

Re: Information on left temporal lobe surgery - can anyone give

Hi!

I had right temporal lobe surgery done in August '07 and have been seizure free since. I stayed in ICU for 3 days and then moved to a regular room for 2. Recovery time varies, but with pain meds and ice packs it really wasnt too bad. I did lose some periferial vision in my left eye but not all that bad. Something that i knew before hand that could happen. To me it is well worth the small price to pay to be seizure free! As i was having at least 5 seizures a month before surgery.  Good luck to you. Faith and prayers work wonders. Take care and God bless, Becky

Information on left temporal lobe surgery

I had right-side surgery in 2003 and have detailed my experiences below:

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

Kevin

Re:Info on Left Temporal Lobe Surgery

Hi Emz xxx. I myself might be having Left Temporal Lobe Surgery as well. I am a 26 year old female who had her first seizure in August 2005 just a few weeks after I turned 24. I the enture time I grew up I  never had  any type of seizure (or at least any that was recognizable) all throughout my childhood and teenage years.  Then, in August 2005 when I was 24, I went into very serious and violent convulsions. I am not sure how long it was before I woke up, but it had to have been a few hours, because when I woke up my mom (who lived an hour and 45 min. away) was the first person I saw.  Since then, I have been through all kinds of EEGs, MRIs, and PET Scans to determine what could have caused my seizures or to find out where they were coming from. Since I was diagnosed with having a "seizure disorder" in '05 I have had all different types of seizures, from simple eye twiching, to leg scratching, to biting my lips, to convulsions, with no answer to what has beed causing them. It was not until last summer (2007) that the doctors recorded a seizure while I was having one via a Video EEG, in My Left Tempral Lobe. I am currently on 3 anti-convulsants ( Phenytoin, Lamictal, and Keppra) and am maxed out on the amount to take. I have been on the waiting list at my local hospital  for surgery since November 2007, an was not able to have my WADA Test until this past June (2008). The rsults have came in, and I am scedualed to meet with  the neurosurgeon on Friday, August 1, 2008. If I am able to have this done, i was woundering if you, or anebody else could tell me what to  expect from a personal level, rather than what the doctors tell me. If you can please e-mail me at ahardway81@msn.com. it would be greatly appreciated.

God Bless!

Anna

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