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  #1  
Old 03-20-2012, 09:22 PM
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nervous about surgery


hello, my name is angelo. i was just told i was a canadate for a left temprol lobe lobectomy, any medicine u name i've been on. back in 1997 i had the vns but in it seems like it reduced my grand mal seizure but then i started having vocals. im trying to get opinions on the surgery , what the risks are, how painful we'll say on a scale of 1-10 and pref a few estimates on the chances of success, i've heard 50% 65% 80% and so on of success, more positive than negative. I love this site because i dont feel alone and people know what im going threw, i can go on and on about this, another concern is my mri showed a big abnormality on the left side yet it showed a little activity on the right.. does this mean they could come back or not completely go away? i'd like honest opinions from everyone who has had or knows more about this specific surgery gimme all the feedback u can, the good and the bad. i need to know where i stand and what the right move is, i wish the best for all that have done or are gonna do the surgery and thank everone ahead of time for any feedback i get. sincerely Angelo Panagiotopoulos
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Old 03-21-2012, 07:43 PM
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hello! I know little about the surgery but one thing for sure is that it's natural to feel nervous and anxious. I'm sure some people will come forward with more qualified information. Good luck to you.
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Old 03-22-2012, 09:22 AM
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Hi Angelo, there are members here who have personal experience (both good and not so good) with it. I tried to summarize what I could find about it (pros and cons) in the chart I made:

http://www.coping-with-epilepsy.com/...oral-lobectomy
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Old 03-22-2012, 09:56 AM
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Originally Posted by vagellie View Post:
does this mean they could come back or not completely go away?

i'd like honest opinions from everyone who has had or knows more about this specific surgery gimme all the feedback u can, the good and the bad.

sincerely Angelo Panagiotopoulos
Hi Angelo,

I had a left temporal lobectomy back in 1990. I was seizure free for 14 months. So yes, the seizures can come back! For me they were worse than before surgery! Before the surgery, I experienced 4-5 complex partial's a day. I had to go thru the brain mapping to find out exactly where the seizures originated from (check out this website: http://www.epilepsy.com/epilepsy/surgery_brainmap) and the WADA test to make sure it wasn't going to interfere with my language (http://www.epilepsy.com/Epilepsy/surgery_wada)

When the seizures returned, I not only had complex partial's but also tonic clonic's, not as many a day,but the tonic clonic's were much worse than before surgery. I also experienced (and still suffer from) depression, memory loss, dyslexia, aphasia. I guess I'm one of those in the 10-20% range that nothing works. I now have the VNS, and it has helped, but not stopped the seizures, along with taking meds.

I wish you the best!
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Old 03-24-2012, 07:41 PM
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thank u


i thank u all for this info, keep feeding me with it if u can the more i learn the better. havin another wata and mri soon and i think it was called and meg test but i dont know what it is. tyvm for everything and i wish everyone the best
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Old 03-24-2012, 08:04 PM
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You might want to search PubMed, Pubget or the British Medical Journal for "Left Temporal Lobectomy"

See what studies seem relevant & ask your neurologist if they apply to you & why or why not.
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Old 03-28-2012, 04:32 PM
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if u don't mind me asking what were u diagnosed with
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Old 03-28-2012, 07:12 PM
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diagnostic


i was diagnosed with left temprol lobe seizures but the activity was on both sides. i was born with epilepsy. my mri shows a significant abnormality on the left yet still some activity on right. had another mri yesterday and having \ wata test next week i,m on depekote and lamictol atm.
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Old 04-03-2012, 01:12 PM
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I just the surgery this past Dec 8th 2011 best XMAS gift ever i was nervous at all i was more excited then anything. If you any questinos please free to ask me, email, or pm me. I will be making a thread, I also have you tube channle as well. I have been seizure free 4 months now as of March 29th 2012 even though Im still on seizure meds, but before the surgery i was getting seizures 4-5 times a week un controlled on meds full gran mal. The surgery was 8.5 hours long i went in on Dec 8th 2011 and was released Dec 12th 2011. Please PM or email me. I' am in the process of starting a chairty for the fight against epilepsy. I have had epilepsy since 2006 which i believe arised from fooling around on wheel chair.

don't worry you will be fine leave it gods hands it is normal to be nervous.
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Old 04-03-2012, 03:37 PM
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Originally Posted by TillTheEnd View Post:
I just the surgery this past Dec 8th 2011 best XMAS gift ever i was nervous at all i was more excited then anything. If you any questinos please free to ask me.
don't worry you will be fine leave it gods hands it is normal to be nervous.
Was your surgery on the left or right side?
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Old 04-03-2012, 10:26 PM
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i thank u for all the info. was your surgey on the left or right and was your activity on both sides?
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Old 04-04-2012, 12:12 PM
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Originally Posted by Cint View Post:
Was your surgery on the left or right side?
Originally Posted by vagellie View Post:
i thank u for all the info. was your surgey on the left or right and was your activity on both sides?
Right frontal Lobe, due to my rare condition of my seizures and not being able to control them with medications, my surgery took close to 9 hours, I was there first patient ever to have a seizure during the surgery with my skull exposed during surgery. They told me they actuall saw the seizure take place, from the location where they start from and then end from it was crazy. Due to that i have been deemed qualified for a research case here in San Diego CA, where I have been getting seen since 2006 at UCSD.

I went into surgery Dec 8th 2011 at 5:00am released Dec 12th 2011 23 screws 58 staples.

I do not want to "thread jack" is it okay if i post pictures

If you want my email, phone, IM Please feel free to ask via pm
my name is teddy im so glad that my friend and found this forum, i have been so alone and home bound.

Last edited by TillTheEnd; 04-04-2012 at 12:33 PM.
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Old 04-04-2012, 04:09 PM
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Originally Posted by TillTheEnd View Post:
Right frontal Lobe, due to my rare condition of my seizures and not being able to control them with medications, my surgery took close to 9 hours,
The frontal lobe is the most common extratemporal site for seizures. So did you have an Extratemporal Cortical Resection surgery?

Quote :
Who Is a Candidate for Extratemporal Cortical Resection?

Extratemporal cortical resection may be an option for people with epilepsy whose seizures are disabling and/or not controlled by medications, or when the side effects of the medication are severe and significantly affect the person's quality of life. In addition, it must be possible to remove the brain tissue that contains the seizure focus without causing damage to areas of the brain responsible for vital functions, such as movement, sensation, language, and memory.

How Effective Is Extratemporal Cortical Resection?

Extratemporal cortical resection is successful in eliminating or dramatically reducing seizures in 45% to 65% of cases. Surgery generally is more effective if only one area of the brain is involved.


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Old 04-04-2012, 06:48 PM
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I had the left Temperal lobe surgery back in 1984 . It was an early time for Epilepsy surgery although it did start back in 1950's but it didn’t really started to get going until the 1990's and I was one of the first patient’s. Back then I was just given a regular room in the hospital , hooked up to an EEG and I controlled the machine myself with a push button to start it (when a seizure started) . We collected the data and I went through psychology tests and I was sent to other hospitals in the city because several doctors were were interested.

Surgery lasted 7.5 hours and I was in the hospital for 7 weeks. ( remember this was 28 years ago) . I saw the doctor a year after the surgery and then walked out of his office and never had a seizure and never saw a doctor again.

I do have a small problem with memory and remembering names. I just had to accept it and go on with life. I would do it again if I had to!

11 inch cut , 60 Staples but they glued the skull back on and that is the safest way in case you ever need an MRI. I hope every thing works out for you.
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Old 04-04-2012, 07:05 PM
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Originally Posted by Cint View Post:
The frontal lobe is the most common extratemporal site for seizures. So did you have an Extra-temporal Cortical Resection surgery?
There were other findings that they found between color dye M.R.I so on and so forth, but yes your statement above is 100% correct.

They removed close to 2 inches of brain matter.
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Old 04-04-2012, 07:19 PM
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Originally Posted by Razman View Post:
I had the left Temperal lobe surgery back in 1984 . It was an early time for Epilepsy surgery although it did start back in 1950's but it didn’t really started to get going until the 1990's and I was one of the first patient’s. Back then I was just given a regular room in the hospital , hooked up to an EEG and I controlled the machine myself with a push button to start it (when a seizure started) . We collected the data and I went through psychology tests and I was sent to other hospitals in the city because several doctors were were interested.

Surgery lasted 7.5 hours and I was in the hospital for 7 weeks. ( remember this was 28 years ago) . I saw the doctor a year after the surgery and then walked out of his office and never had a seizure and never saw a doctor again.

I do have a small problem with memory and remembering names. I just had to accept it and go on with life. I would do it again if I had to!

11 inch cut , 60 Staples but they glued the skull back on and that is the safest way in case you ever need an MRI. I hope every thing works out for you.
When i was released on Dec 12th 2011 I was recovering just fine, i went to my brother house Jan 16th 2012, of course i was driven up there but i suffered a huge fall, not seizure related, I was on the second floor of his house I was coming out of his bathroom stepping backwards to close the bathroom door as i was turning around. I missed the first step as I started to head down the stairs went head fist slamming my head into the wall on the surgery side that I just had done. I was admitted to the E.R where they conducted a cat scans, Color M.R.I to make sure I did suffer any brain damage, fractures, or internal bleeding because i was just released from surgery only but a few weeks ago. Well it was at that time they had found I was on the wrong dosage of of TOPAMAX. They upped my dosage from 50mg to 100mg

now I'm suffering from anxiety attacks, panic attacks and nervousness, when in crowded in places. I have hard time remembering faces, my concentration level and attention is really bad, my typing is really bad. I writed these post, but I have a friend look them over and spell check them over. I' am sorry to thread jack.

About the surgery, stay positive you will be fine, when you wake from the surgery don't drink any fluids right away because the anesthesia will be in your system for a while, but if you have to drink fluids it will make you vomit and that will cause a lot of brain pressure and pain. So make sure your mentally ready for that. Squeeze, and hold onto a pillow very tightly to relieve the pressure and pain, it a little tip the nurses taught me, it helped alot.

Last edited by TillTheEnd; 04-04-2012 at 07:24 PM.
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Old 04-04-2012, 10:10 PM
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I hvaent been arondn long enough to post the link of my surgical video/pics i wnated to share with you maybe i can pm it to you soorry
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