ADVERTISEMENT
ADVERTISEMENT
Deadhead

Right Temporal Lobe Surgery

Topic: 

I have been having seizures since I was 12 years old.When I was younger, my seizures although not very frequent were quite severe and I usually always went into "Status" and would always have to be brought to the hospital to be brought out of them.I am allergic to Dilantin, Tegretol, Phenobarb and have been on alot of other AEDs that have not worked or have only worked for a short amount of time to control my seizures.As I grew older, my seizures became less severe but more frequent.I am now 34 and suffer from Simple and Complex Partial seizures, three or four times/month.For the past six months I have been going through testing at Yale to see if I might be a candidate for surgery.I have gone through a two week stay in the hospital for constant video eeg monitoring, I have had Ictal SPEC and PET scans and numerous MRIs.I have also had my WADA test.With all the scans and monitoring that I have had, they have determined that the focus of my seizures is in my right temporal lobe but my brain is othewise normal with no lesions or scar tissue of any kind.I am scheduled to be admitted into the hospital on Feb 7th for surgery to have a grid and depth electrodes placed on the surface of my brain to determine where in my temporal lobe the focus of my seizures is.The Drs. think I am an excellent candidate for surgery.The thought of having a temporal lobectomy scares me.I had an MRI done at Albert Einstein College In NYC, they have one of the largest machines in the world and nothing abnormal showed up.I would feel better about having a piece of my brain removed if there was an abnormality.Everyone that I have talked to that has had this operation has said that it has changed their life for the better.I have nt driven a car in almost 5 years and I am currently taking Keppra and Zonegran.The Keppra causes me to be severly depressed.When i was in the hospital for my monitoring and was taken off all of my meds, I was like an entirely diffrent person off the medication.I was HAPPY!! I was Smiling !! I was laughing!! I would be interested in hearing from anyone that has gone through the surgery or has had or is having any kind of similar experiences.This is one of the scariest decisons I am ever going to have to make in my life.

Comments

Re: Right Temporal Lobe Surgery

I had a gran mal seizure in December of 2009. I have no history of epilepsy so it came out of the blue. I have not been able to drive since. I have been on Lamictal, Topomax and Kepra in all sorts of dosages but to the dismay of my neurologist, my body seems to metabolize it too quickly for it to regulate my seizures fully. Every time I had a AEEG, it recorded a minimum of 20 seizures in a period of 3 days. My MRI showed no abnormalities or scar tissue. My VEEG narrowed the location of the seizures to the right temporal and frontal lobes. Now my neurologist is trying to get it approved for me to go in for the more invasive testing that involves going through the skull and placing the electrodes on the actual brain in order to get an idea where exactly the seizure were coming from so that I could have the surgery and my life could go back to normal. I had just received my teaching credential and and masters and am now receiving my second teaching credential. I need to be able to get a job which I can't do without being able to drive (up in a small mountain community it is a must).

RTL

Hello Deadhead my name is Scott and I han my RTL on November 12th.

I agree it definently changes your life for the better. I also havent driven for 6 years and if all continues to go well will be able to drive again in the fall of 2008.

Prior to my surgery I was having about 1 to 2 seizures a day each lasting about 2 to 3 minutes a peice. Since surgery I had one night where I had 4 seizures each lasting about 5 seconds or less. I was only 1 week out from having had the surgery so my brain was still healing and I was so loopy from the pain meds that I had forgotten to take my aed's the day before.    OOPS!!!!   My bad.

Since then absolutely no seizures what so ever. Because my Right side had ben bad for so long my left temporal lobe has taken over and performs the functions that the RTL used to do. So much like yourself I was also given a high chance of success.

So far so good. If you have any questions please feel free to contact me or chat on-line with me.  Good luck, and take care Scott.

Re: RTL

Hi Scott,

Glad to hear you are doing good :)  My daughter is scheduled for her first viedo EEG on the 17th of march 2008

she is exicited. She is 11. She has been having  spells starting at the age of 3 mo. not knowing what they were

A  Dr at childerns in Dallas said they were Migraine without the pain so we went with this diagnosis  up until july of 2006 when she had her 1st  Seizure.

What kind of recovery did you have? Personality, memory.

Take care

TThurman

Re: Right Temporal Lobe Surgery

I went to Yale for brain surgry this past summer. Chances are I went through the same tests as you. I was sent to Albert Einstine Hospital for testing. After 1 month in Yale, laying there doing nothing while my medication was lowared and I was monitered, they decided I was not a canidate because of where my seizures were coming from.

I'm glad I tried though. They are very careful and won't do the surgury if they think there is too much of a risk for you.

I know someone else who went there and was able to have the surgury. He has been seizure free ever sience.

If you are looking for advice I'd try it. (as I did) but we are all different so it comes down to you making the decision.

P.S. The people there are so nice.

-Kristin

Right temporal lobe surgery

I'm now 50 and have been an epileptic since 13mth diagnosised when I was 6 since I didn't grow out of seizures but rather into.......I'm a canidate for the surgery went through 1 phase now they're doing similiar test only now when I have the seizure they will inject dye to be able not to do as much possible damage. I too am having this all done at Yale New Haven,CT......I also am trying to get other experiences......seeing that I'm scared but assured they will only do this if not much damage will happen.......I'm looking into this cuz I am unable to drive and at my age you don't rely on friends as much and would like to seem more independent. Anyone out there please post a reply or add me to your buddy list and I'll reply. This is exciting but a little scary at the same time.

Dee

Right temporal lobe surgery

I'm now 50 and have been an epileptic since 13mth diagnosised when I was 6 since I didn't grow out of seizures but rather into.......I'm a canidate for the surgery went through 1 phase now they're doing similiar test only now when I have the seizure they will inject dye to be able not to do as much possible damage. I too am having this all done at Yale New Haven,CT......I also am trying to get other experiences......seeing that I'm scared but assured they will only do this if not much damage will happen.......I'm looking into this cuz I am unable to drive and at my age you don't rely on friends as much and would like to seem more independent. Anyone out there please post a reply or add me to your buddy list and I'll reply. This is exciting but a little scary at the same time.

Dee

Re: Right Temporal Lobe Surgery

Hi there,

Welcome to the forum! It was nice chatting with you in the chatroom earlier this evening.

WOW - you have a really hard decision to make, and my thoughts are with you as you go down this road. My epileptologist thinks I may be a candidate for surgery also, but I haven't explored it very far. They did find a lesion in my right temporal lobe on my last MRI, but we're not certain that it is the only focal point of my seizures. There were several abnormalities on the EEG's that indicated left side focal point also.

I think the surgery would be a very hard decision for anyone having to make it. Just the thought of having part of your brain operated on is frightening to me. However, with all the side effects of the AED's, especially the depression, personally, I may lean towards the surgery. Like you, when they took me off of AED's while in the hospital for testing, I was my old self again. Wow - laughter, comprehension, happiness? They were back !! They have me on Keppra and an anti-depressant now, and I am functioning better, but my seizures are not under control. I still have an average of 1 or 2 a week.

I wish you the best of luck as you go down this path. Know that you have friends here who will be very supportive.

((( blessings & hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Right Temporal Lobe Surgery

Hi D,

Sounds like you and I have been down the same testing road.. although you got the American version and I got the Canadian version.
Eg... in the USA (I'm told) the WADA test is given to everyone, whereas due to the expense, here it's only given to those who show possible problems in their neuro-psych test and only after all other tests (since if other tests aren't pro-surgery the WADA woukd have beeen $$ wasted).
Yet, due to your paying directly for the services, you were able to complete the testing in 6 months - whereas it took me 22 months.

I've had this a very long time..since I was 3yrs old. My mother had me at the Montreal Neurological Hospital when I was 20 & when I was 24 ...but you know, I was glad I didn't come up as a candidate for surgery since my ventures with surgery back then were more my mother's idea than mine.
Having had this all my life, I was normal, ty, and I wouldn't have been willing to take the risk.

When I was 38, after seeing a fortune of neurologists, I was sent to a fantastic female epileptologist who intuitively knew what meds would control me. Thanks to her, I had 10 years of complete control. My confidence zoomed though the roof, I was driving - for the first time in my life, and I got to know the independence that most take for granted.
Then one day - two years ago this coming February - the freedom I had dissolved when I had a complex partial behind the wheel and drove the car into somone's garage.

Now I knew what I was missing so for the first time in my life I had problems coping, and I know I will never trust meds to drive again..so my only recourse was to investigate surgery.

I'm about to undergo a left temporal lobectomy on Thurs Jan 12th - and I'm psyched. As I see it, I'm fortunate to be eligible for the surgery, and I will never get my life back that I had if I don't go for it & take the risk.

I'm not the least scared about the surgery..I'm more afraid of being one of those where the surgery doesn't work...but the upside is so great I don't see how anyone can lose by trying.
And neurosurgery units are known by their successes, so there is little to be scared about IMO.If you have been chosen for surgery
chances are that things look in your favour, so go for it!!

~sol

Re: Right Temporal Lobe Surgery

My 21 year old daughter is scheduled for RTL surgery on Jan 3rd 2006. She has been battling a seizure disorder since she was 4 years old. She has tried about 10 different meds singly and in combinations but has has no success with any of them. She is trying to hold down a full time job and they have been very understanding of seizures she has at work. However she's only been there 4 months and will now be off for 2 months after the surgery. My concern is the effects of her losing that portion of the brain. Long term effects?? Immediate effects?? What is the recovery like in the weeks following surgery??Will she need full time help. Should I take an extended leave from work to be with her ? I have that option available to me but I'm not sure what to do. She is really nervous but also hopeful that this will change her life for as you know that living with uncontrolled epilepsy means your life can be turned up side down at any second.

Hi Dina, re:My concern is

Hi Dina,

re:My concern is the effects of her losing that portion of the brain

My WADA test proved my epileptologist's statement: "Often if/when there is a problem with a young brain, the other side picks up the slack and compensates"

They found some 'typically' left brained duties were being done by the right side of my brain since the left was unable to function properly. So if it's the ability of her brain to work as it should there's no need for concern (assuming she passed the WADA)

Also, sadly,there are no promises of complete control re surgery - only about 70% gain it.Your daughter needs to realize this and be prepared no matter what happens.

~sol

Re: Hi Dina, re:My concern is

hi my name is misty i under went right temporal lobe surgery this april 06 will be 2 yrs since my surgery i had seizures since i was 2 yrs old everyday up to 6 times a day they just got worse when i was about 18 i got preg.and that brought on the gran ma seizures so i was having both epilepsy and gran ma my live was alful couldn't drive couldn't work been on diff meds nothing work so my doc refeered me to a specialist thats where they done several test and determind where it was coming from my right temporal lobe they gave me a 70%of never having another one or i could be a ginny pig and keep tring meds well i went with the surgery it was the best thing i could have ever done i would do it all over again i'm seizure free for 2 yrs now and when you have them everyday for 24 yrs thats along time to be seizure free but i would refer anyone to it it saved my life it gave me life i'm normal i can live a normal life thank god.

Re: Re: Hi Dina, re:My concern is

Hi Misty ! Thanks so much for sharing your story! And I am so thankful you have had such a positive outcome. Your story will help those looking at surgery and provide a very positive light on the possible outcomes.

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

babygurl, I had the surgery

babygurl, I had the surgery on the Left Temporal Lobe and they removed a part of my brain about the size of you thumb, and they let me see it after the operation. However my speech and memory was not effected so there is very slim chance that it would make a difference that is if they did test to see what sides of the speech and memory are located both specch and memory was on the right Lobe. If both functions are on the side of where the seizures start and end they would have to do local anestetics. I just had faith in it because I wanted to go to school and here I am. Just step out on faith!
God Bless

Re: Re: Right Temporal Lobe Surgery

Hi Dina,

I just wanted to check in and see how your daughter (and you, of course), are doing.

My thoughts are with you,
Barbie

Re: Re: Re: Right Temporal Lobe Surgery

Hey everyone,
I am a mom of 3 and my 10 year (Baby)has had partial compex seizures since she was 4 years old. After trying numerous medications and struggling in school we have decided to go for the surgery. All we know is that it's in the frontal lobe, we don't have a definate focal point. To our suprise the surgeon did mention cortical dysplasia...we understood that to be a good thing if that is what is causing her seizures. Ofcourse now that we have decided with TONS of prayers that we would go forward she is doing better. The Doctor calls it the Honeymoon stage because shes on new meds. Our surgery date is October 16th...any feedback would be appreciated.
Thanks and good luck to everyone.
Baleighsmom

Re: Right Temporal Lobe Surgery

Hi Baleighsmom,

I know this is a really old thread, but wanted to see if you did have her surgery and how did it go. Hope she is doing well. We are in a similar situation. My 6 year old daughter was having 10-12 drop seizures and we got her evaluation done 2 months back. After a lot of deliberation, we finally decided to have the surgery and it is scheduled in 3 weeks. However, last 2 weeks she's doing better and hardly having seizures, go figure!! Now we are in a dilemma whether to continue with the surgery. She's had 'honeymoon periods' before too.

Abhilasha

Re: Right Temporal Lobe Surgery

I am 30 and had my first seizure about 4 years ago. MRI's showed a tumor on my left temporal lobe. After many MRI's the options I was given were, do nothing (just continue meds), have rediation therapy, or have surgery. I was going though a divorce, had a 1 yr old (and a 4yr old) and my job was undergoing changes too. My life was very hectic to say the least. I opted for surgery. My surgery was 3yrs and 3 months ago at UCSF. I had a seizure the day after the surgery, while still at the hospital. I had another 4 days later, whn I got home. Seven months later, I had another, while I was asleep. I haven't had any since. Right after the surgery, the surgeon was ready to take me off meds (I was taking Dilantin at the time). My neuro-oncologist was hesitant though. I have stayed on medicine and at this point will indefinatly. A year ago I swithed my medicine to Lamictal. On a side note, I LOVE lamictal. The side effects have been minimal compared to how much better I feel. The surgery was the hardest thing I've ever done in my life. I don't regret it though. I guess I have some confort in know that the tumor is gone. This May will be 3 years seizure free. I hope that things go well either way.

Re: Right Temporal Lobe Surgery

Do you mind me asking where exactly your tumor was in the left temporal lobe? Im scared to death. I have a 12 yr old son who has been having complexx partial seizures for the last 2 1/2 years. He is currently on Tegretrol. Ive been so stressed out as a parent. His seizures have been pretty much controlled with the meds. He has one maybe once every 3 or 4 months. Maybe once a month too but not very often. His mri shows a lesion in his left temporal lobe. Doctor just wants to monitor it to see if it gets any bigger. In 2 1/2 years it hasnt grown any at all, so I'm trying to stay positive. When he was first diagnosed with the seizures he had no memory of them, they would last for a few minutes. Now they arent as ling and he has memory of them. I havent seen him have one in a very long time, he comes and tells me. He says they dont last for maybe a minute and remembers having them just is really tired afterwards.  I know I'm jumping the gun with everything. His Dr seems to not be concerned doesnt want him to come back for a check up and a repeat MRi in a year. I guess thats good news? When I mentioned surgery he said yes but there is risk with it effecting his speech. Being a parent I just worry about him so much. I worry that he is going to have a granmal seizure. I just don't know why they dont send me to a surgeon now and let them take it out. I'm so scared they are going to tell me he isnt a candidate because of where the lesion in located. Has anyone had a lesion/tumor or whatever removed from your left temporal lobe?

Re: Right Temporal Lobe Surgery

Hi there

I am so pleased for you that you are an eligible candidate for surgery, but I can also sympathize with how scary you must be feeling right now with the surgery being so close.

I have complex partial seizures too with a scar in my Left Temporal Lobe. I have been having tests done to find out if I am eligible for surgery. I have already had the Video Telemetry EEG test where my drugs were drawn off me until I had a few seizures shown on camera. I have had numerous MRI Scans and now just waiting for my next thing to be the Wada Test which I am dreading deep down before the actual surgery. Another thing that is worrying me is the recovery period and how bad and how long will it be?

I wish you all the best for your pending surgery and don't worry to much. We all have to try and think of the positive outcome it will hopefully bring us.

Let me know how you get o!!!

Teri

Re: Right Temporal Lobe Surgery

hi my name is misty and i had the right temporal lobe lactomy april will be 2 yrs and 2 yrs seizure free i think it was the best thing i could have ever done i was having seizures up to 6 times a day so i am so happy and i know what it's like to live a normal seizure life now i had my surgery done at a medical college in augusta ga. they are a great team of doc. and surgions i would highly recommend them to anyone but if u would like to talk u can im me on yahoo messenger at sparklecitys_flirtin_babygurl or u can email me sparklecitys_flirtin_babygurl@yahoo.com keep ur head up and keep smiling brighter days are just ahead.

Re: Re: Right Temporal Lobe Surgery

My daughter has surgery scheduled on the 16th at MCG. Did Dr. Mark Lee do yours?

Are you right handed or left

Are you right handed or left handed? Did you have febrile seizures as an infant?, or perhaps meningitis? Sometimes your medical record may put your mind at ease. Medicine sometimes has theories that are just as standard as physics-such as dropping a ball and having it fall towards the earth or in medicine using antibiotics to kill a strain of bacteria. The trend seems to be people who have had febrile seizures tend to develop seizure disorders later in life. Also the most preferable side to have surgery on is the non-dominant hemisphere of the brain. If you're right handed, it would be best to be a surgical candidate for a right brain tissue resection...in most cases. The WADA test, however, is important in determining how much functioning there really is on that side of the brain. Along with other tests, it will determine if you truly are a good candidate. Here's why I was a good candidate...

1. I had a strong seizure focus on the right hemisphere around that area of the brain.

2. I was right handed and my left brain hemisphere was dominant. My language and speech functions were on the left side.

3. Extensive testing (neuropsychological, WADA) showed that because my seizures had gone on for so long, (I can even remember the auras back from kindergarten) the circutry of that area around my brain was fried. The theory is that that tissue doesn't function correctly, and mostly not at all, and over time can cause "kindling" where the other side adopts the same dysfunction. Since that tissue, and the surrounding area weren't doing any good, surgery was the best option.

4. Most importantly, the medication wasn't working, surgery of any type should be a last option- but 3-4 complex partial seizure means loss of consciousness and is pretty severe. The doctors did notice scar tissue in my case, hippocampul sclerosis, my mother remembers that one doctor said he saw nothing. Second opinions are good ideas, it's your brain after all. However, there was scar tissue there in my case.
I am happy with my surgery...but remember this is your decision,and a hard one I know, I don't want to sell this to you cause I felt like some of the doctors were doing that to me and it made me paranoid. This is just my testimony.

...and in the end, the love you take, is equal to the love...you make. Lennon&McCartney.

Re: Are you right handed or left

This is my first entry here.
I've had two right temporal lobectomy procedures. The first was in 2001, the re-surgery was done in 2005. I suffered with adult on-set temporal lobe complex parital seizures for eight years. Before the first surgery I was experiencing 7-10 seizures per day. Surgery was my last HOPE. My seizure activity returned after 13 months.Then I went to the Cleveland Clinic in Ohio for the re-surgery.
Now I experience double the memory loss side effects, and the left visual loss as well. However, I am once again seizure free 18 months after surgery. My vision loss is severe enough that I'm not able to drive now. I did enjoy about 13 months driving and I returned to my nursing career for the short while I was seizure free between the two Right Temporal lobectomys. I was frightened with each surgery. However, living with seizure activity and remembering to use seizure procautions all the time was a nightmare for me. I am still mostly disabled. Now I am a stay at home wife. I hope you each found a better life after surgery. God Bless you and Good luck in your future.

Re: Are you right handed or left

Your seizures sound a lot like mine. I have gone through the pre testing this year and am up to the final test... WADA to be done on December 21st. They are anticipating my surgery for probably February. My seizures started as febrile at 15 months old and then didn't start again until 8 years old. I have had partial/complex partial ever since and am on my 9th combo of drugs. My damage is on the left temporal lobe of my brain (scar tissue) and it is now as you say "kindling" my frontal lobe. How many days a month were you having your seizures ? I used to have them for 2 or 3 days but have suddenly jumped to bout a week out of every month with sometime 8 or 9 seizures a day and my memory has deteriorated terribly this year. Also, are you here in the states (I live in Georgia and am now in my 40's)

Re: Right Temporal Lobe Surgery

I have a daughter that is 6years old and she has been taken seizures from 5 months old...and she is on three meds right now plus daistat prn... OMG ... this sounds just like her you could be her twin....no lie and she went into the hospital for four weeks and they took her off all her meds and she was a different person as well.... it was nice to see her with out any meds but then again she was with dr's and RN so i was comfortable with that...i could never do that at home ( not like i would anuways but) just the way that she was and the way she is now i just want to cry cause it was nice to see her with out any meds....like i said she is 6 and i just now put her in school cause i was scared to put her in..she is doing good in school and gets along with other kids but i stay at home all the time just in case she would have one so that i could be there with her...if you do have the surgery let me know how things go...take care and god bless....MsJody

Filtered HTML

  • Web page addresses and e-mail addresses turn into links automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <blockquote> <code> <ul> <ol> <li> <dl> <dt> <dd>
  • Lines and paragraphs break automatically.

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Type the characters you see in this picture. (verify using audio)
Type the characters you see in the picture above; if you can't read them, submit the form and a new image will be generated. Not case sensitive.