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Right Frontal Lobectomy

My 6 year old son had a right frontal lobectomy on September 23, 2005 for intractable seizures. He didn't start having seizures until Sept. 1, 2005 so I didn't get to learn a lot before surgery. I was hoping to get some input from someone who has been through this and can tell me the progress they have had. I don't always know what to expect and because of his age he doesn't always communicate how he is feeling. I was told that the left frontal lobe will "take over" a lot of the functions since the removal of the right frontal lobe. If anybody has been through this and can offer any advice please let me know! I keep searching for answers to everything! Thanks, Shelby

Comments

Re: Right Frontal Lobectomy

Hi,
I don't have alot of info. for you, but would love to know some more info. about your son. My 10 yr. old son will probably have surgery on his R frontal lobe this fall for cortical dysplasia that was found on a M.R.I. this past spring. Did your son have his whole R. frontal lobe removed? How is he doing today? What are the major changes you've noticed in him since his surgery? What kind of szs. did he have and is he still having them? Sorry for all the questions, but I am so curious, since there aren't too many people that have surgery on the R frontal lobe. I sure hope the surgery went well and can only imagine how hard of road it has been. I have heard that the earlier a patient has surgery the better a chance the brain has to develop new electrical pathways. I hope you find some good info., from others that have been thru a similar situation.
Cheryl

Re: Right Frontal Lobectomy

My daughter's situation is almost identical to your sons. Just today she had her right frontal lobe resected.  Can you please tell me how your son is doing today?

Re: Re: Right Frontal Lobectomy

I would love to give you any information I can. I have found very few people who have had right frontal lobe surgery. My son also was diagnosed with cortical dysplasia. My son was completely healthy and had no medical problems at all (total normal childhood) until September 1, 2005 when he was 5. He was riding in the van with our nanny and he started having a grand mal seizure and was rushed to Riley Hospital in Indianapolis Indiana. When we got to the hospital, they were able to stop the seizure and said a lot of children have seizures and they would give him medication and he would be fine. They kept him in the hospital for observation and he started having seizures every few minutes - they gave him every seizure medication out there but nothing would stop the seizures. When he would have a seizure his face would flush, heartrate would skyrocket, his arms would stiffen or make a movement repeatly (if he was doing something with his hands when the seizure started his hands would continue that movement during the seizure). He would always be awake and conscience during the seizures but they never lasted very long - about one minute(except for the first one in the van). To make the story a little shorter - they put him into a penobarb coma because his body was shutting down and medications weren't helping. While he was in the coma they were able to detect cortical dysplasia with numerous MRI's and tests. He had his entire right frontal lobe removed on September 23, 2005. I have a lot of good news post surgery!! He is doing amazingly well. After surgery, they slowly brought him out of coma and he went through two months of agressive physical and occupational therapy. That was mostly because of the coma though and not the surgery. Right after surgery his main mental deficits were "word finding difficulty", he knew what he wanted to say but couldn't think of the word, short term memory, lack of inhibitions (example - he knew the stove was hot but nothing would stop him from touching it), concentration/focus difficulties, behaivor, and being in social or busy situations. It is less than one year post surgery and he is doing better everyday. Now we still struggle with short term memory, keeping his life structured and using charts helps a lot. The inhibitions and word finding difficulties are much much better. The social and behaivor aspects have been helped a lot in the last few months after our neurosurgeon put him on Ritalin. She said most children with any frontal lobe problem need some kind of ADD type medicine post surgery. That has worked wonderful. He is keeping up with his class in school. He has an aide to help keep him focused and on task. He is in a regular first grade class and loves school. Best of all, when he was in the hospital right before they put him into a coma, they had recorded 100 seizures that day and he had stopped breathing twice and he was on every seizure medication they could put him on and they weren't helping at all, since surgery he has not had ANY seizures at all. Sorry this is so long, but I have not been able to find anybody who has had any issues with right frontal lobe! If you would like to talk or have anymore questions at all, please ask! I would also love to know more about your son, what his seizures are like, how long he has been having them, is he on any seizure medication. Dalton is on Keppra, Trileptal ,and Ritalin right now. He was on Topamax also when we first got home from the hospital but has since been weaned from that one. I'm not sure the medications are doing anything since they didn't do anything in the hospital but the doctors want to keep him on them for awhile. Shelby

Re: Right Frontal Lobectomy

 My daughter's situation is almost identical to your sons. Just today she had her right frontal lobe resected.  Can you please tell me how your son is doing today?  

 

 I accidentally posted this to someone else's post & am mentioning it here since this was comment I meant to post my comment to)

Re: Re: Re: Right Frontal Lobectomy

Hi Shelby,
What a scary situation initially. I can't even imagine having everything happen so quickly. It's like you didn't even have any choice with the surgery because he was seizing so bad. It's like surgery was the only option and thank God for that. Your life must have been a living hell. I can't imagine how you even coped during that period of time. Do you have other children? How long was he in a coma? What's amazing is how well he seems to be doing without the frontal lobe. Do you have his personality back? That's what scares me the most is that I will lose my little boy's personality or the heart of who he is.
We didn't even know about Gabe's cortical dysplasia till Mar. 06. He was dx. in april 03 and went 2 yrs. without szs. on only 1 med. When they tried to wean him off he started to sz. again. They put him back on meds. and really never got control of them, but not to bad. In the spring he slowly worked his way up to approx. 70 szs. a day while trying a new med. Since then, we have not gotten full control. He had an M.R.I. in March because of all the increased szs. and they found the dysplasia, which had been there 2 yrs ago, it just wasn't picked up becuase imaging has improved so much. At that point they said we would be a candidate for surgery. Boy, were those scary words!! He had a video E.E.g. in July and everything confirmed the local lesion. All Gabe's paperwork was sent to Children's hosp. in Seattle and now we are just waiting to see when all the prelimanry testing will take place. Gabe's lesion is really close to the motor strip and that is a concern for the Drs. but I guess they won't know till they do the mapping.Did they say anything to you about the motor strip and the potential risk with that? It's all very surreal and I've been a little stressed to say the least. Gabe has simple comlex partial szs. that last about 30 secs. He has 1-2 a day with maybe a day or two off in between. He isn't too bothered by them at this point-I know they trouble me so much more. We are on our 4th drug, which is very early in the process compared to lots of others. He's on 100mg.Lamictal 2x a day and 600mg. of trileptal 2x a day. So far school is going pretty good. The a.m. dose really tires him out so I wake him at 6;30 and let him go back to sleep then wake him up and hopefully he'll be ready for school.
I'm so glad to hear your son has progressed along so well. Do the Drs. expect a full recovery?
Great to find someone who understands. Thanks for your response.
Cheryl

Re: Re: Re: Right Frontal Lobectomy

How wonderful to hear about your son. I know what you have been through. I still get stressed if I think about what my son has been through and I think he is a miracle child and thank GOD. My son is 5 years old and had his right frontal lobe removed when he was 4 1/2 months old. He had cortical dysplasia and uncontrollable seizures. He is doing great. He has been seizure free since the operation. He is in kindergarden. He has low muscle tone and has difficulty with fine motor skills. He goes to OT and PT once a week. We are trying to get his school to provide him an aid to help him focus and stay on task. He had some some difficulty with inhibitions and keeping his hands to himself. He has been diagnosed with sensory processing disorder. He is in a main stream class. The school is trying to say that having an aid would be more restrictive than special education. He is very bright and doesn't need any remedial help except in writing and keeping up. How does your son feel about having an aid. Do the other kids say anything or tease him? It sounds like his school is very supportive. Thanks for sharing your sons situation.
:-)

Re: Right Frontal Lobectomy

Hi, I had left temporal lobe lobectomy earlier this year. I had had epilepsy since I was 4 months old, ( 45 years ago ), in one way I was fortunate I had it early in life. Through neuro pyscology testing and functional mri scans (fmri) ,doctors were able to tell that my right temporal lobe had taken over the functions of my left temporal lobe. They say my brain was able to make the switch because it happened to me at a very young age, whilst my brain was still growing. Did your son have any sort of pyscology testing done before surgery?, if so, post surgery psycolgy testing will tell if there have been any changes to your sons abilities ,i.e. memory, ( short term, long term or visual, verbal memories ) this testing is usually done about 9 months to 1 year after surgery. I hope this answers some questions for you .
Aussie 2006

Re: Re: Right Frontal Lobectomy

Hi,
Reading your situation made me feel better as I am scheduled to go in early next year for my LTL surgery. I am also currently 45 and they believe the scar tissue was caused by a high fever at 15 months of age. I had no more seizures until I was 8 and continued undiagnosed/untreated until I was 19. I am hoping that my right side is able to take over as yours did. I was very lucky growing up as even though I went untreated for 11 years I had no problems in school and even excelled in many subjects. It wasn't until this past year that my seizures worsened and the memory loss as well. Reading all this online I am always curious as to where you had your surgery. I am in Atlanta, GA, USA.
Dawn

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