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Anyone have Lobectomy on Left Frontal Lobe?

My son has been advised to consider having surgery. My concern is the area that his seizures seem to originate. I can't seem to find any info on surgery in this area of the brain, most of the comments I'm finding are from people who have had the surgery on the temporal lobe area. If you or someone you know has gone thru the surgery in the Left Frontal Lobe region, please reply. We are taking a trip to Mayo in May to consult with their team. I am a terrfied Mom looking for more info or details. Thank you in advance.

Comments

Re: Anyone have Lobectomy on Left Frontal Lobe?

Here is info on surgery ,to the frontal area, from a medical site.
http://www.epilepsy.com/epilepsy/frontal_lobectomy.html
http://professionals.epilepsy.com/page/surgery_outlook.html

hope that helps,
~sol

As with meds, people react differently to surgery, so you are best off (IMO) knowing the risks and overall success rate.

Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

LEFT FRONTAL LOBE RESECTION ON 3/20 SEIZURE FREE SINCE!!!!!!!!!!
I HAVE 2 -5 SEIZURES IN MY SLEEP EVERY NIGHT SINCE SURGERY NOTHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Gregg, congrats!!!!! I am so happy to hear of your success story, and wish you continued success. Everything I've read, indicates that the sucess rates aren't as high in the frontal lobe area. I couldn't find any comments on this site from anyone who's had the surgery on the left frontal lobe. The studies I've read stated that the complete success rate was about 70%. Is that what you were told? If not, what info did you receive. I would very much appreciate it if you would give me some details of your experience, etc.

Did you have the instrusive mapping surgery first? If so, how long after did they operate? Where did they perform the surgery? How long did the surgery take, how soon did you get to go home?

I'm an extremely worried Mom, who is taking her son to Mayo for a 2nd opinion, as his neuro in our city is recommending that he consider the surgery, since the meds are failing, and have been for the past year - he's only 26, married, has lost his business, his house - due to not being able to work, etc. He and his wife are living with us, which I'm so happy - as I can monitor him. He has 2-3 daytime seizures, double vision every other day or so, depression, anxiety, now weight loss since he's been on the 4th med (Xonogram - lost 20 pounds in a month, and didn't need to) and so on. Anyway, I am very frightened of him having another brain surgery.

His first surgery was to remove a large hematoma that was caused from a brain injury (hit on the head in PE class) when he was 16. I would really appreciate knowing more info. That experience was a terrifying experience for him and for me, as his Mother. He had his first seizure when he was 18 - gran mals for about a year, then complex partials during seasonal changes in weather, but controlled for the first 8 years, until 2006. Sorry, TMI.

Our consultation appointment is scheduled for May 2 at Mayo Clinic in Rochester. I look forward to reading your details and info. Again, best wishes, truly!!!

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

matt pauls mom,this is gregg.i also had my surgery at mayo rochester.yes i had intracanial testing done along with brain mapping.i had my surgery the day after the mapping .they gave me options and the next day it was done.i had dr.casino for an eptoligist,dr. marsh was my surgeon along with dr. so and dr.patrick.as far as i'm concerned, this is the best place you can go.i had seizures for 27 yrs.and it looks like at worst my seizures will dramatically be less.
best of luck,
gregg

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

We are just about to have this surgery with my 11 year old son I have found the dictors here in Sydney unreal It is still very scary but a huge opportunity where we havent taken this decision lightly and our little fellow understands what is going to happen That is subdural grid placement for 7-10 days then hopefully resective surgery at the focal point I think we are very blessed to have this opprotunity

Re: Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

claireb Hi tuckster, have just found this site and saw your message, my daughter had surgery at the royal childrens hospital in melbourne in 2002 she was 12 at the time. She has been treated for left temporal lobe epilepsy since she was 2years old, she used to have "clusters" which could mean up to 30 + seizures in a 24 hour period, after trying many different medications her neurologist convinced me that surgery would help. It was the scariest decision l have ever had to make. If you want to discuss outcomes etc please reply. l wish your son all the best and hope he makes a speedy recovery .

Re: Re: Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lo

Love to know how your daughter faired My son is really great very positive and matter if fact I'm glad we have this opportunity We are in Sydney and have great doctors I know of Dr Harvey in Melbourne was he your daughters neuro Zac still has 3-8 seizures every night but is on 3 meds in high doses he sometimie has those clusters too although not for a few months now thanks for the message

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

claireb dear Matt Pauls Mom, we live in Melbourne and surgery has been available here for a few years now, my daughter had surgery on her left frontal lobe in 2002, we were told the success rate would be about 50% with no guarantees. In australia the operation is done in two stages, the first is the placemet of the subdural grid which is left in place for approximately one week, during this time my daughter's neurologist stimulated the electrodes to induce seizures, as a way of locating and mapping the location of the seizure source. They located a spot in the mesial (not sure of the spelling) fissure as the point of origin and decided to go ahead with the partial lobectomy. During the surgery he came and told me that their was a possibility that her seizures were originating in the sylvian fissure and this had not shown up on any previous testing, as this is considered too dangerous a place to operate on they only removed a small portion of her lobe that was located higher up and considered safe to remove.He came back again during the surgery and assured me that they could detect no seizure activity and that he was quietly confident that she would only need medication for a further 3-6 months. The surgeries took 7hours and 6 hours respectively and she came through both really well, the only problem afterwards was a reaction to the steroids which caused inflamation of her oesophagus and stomach, this has left her with gastric reflux, and the usual dissorientation after such surgery. My daughter was seizure free after surgery for approx. 3 months it was the happiest time of our lives, unfortunately she received a blow to her head on her first day back at school and had a seizure within 24 hours. She is still on medication and is now having approx. 1 seizure a week. She also needed to have a further operation 6 months after her surgeries to have the metal plate and screws removed as she was suffering from terrible headaches although her surgeon did not think they were related at the time. I hope this information helps you, if you need any more details please feel free to contact me. Good Luck P.S Have they discussed the various risks and side effects involved in left temporal lobe surgery with you both?

Re: Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

yes we have been heading this way for just over a year so sorry to hear about the blow to the head that must have been heart breaking for you all he will have 128 electrodes as theren is still a little uncertainty if exact focus

Re: Re: Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lo

clairebhi tuckster, thanks for reply, yes Simon Harvey is Naomi's neurologist and her surgery was performed by Wirginia Maixner, Simons been treating her since she was 3yrs old we were very lucky to get him. The blow to the head was devastating after everything she went through, but l'm still sure we made the right decision about the surgery, her seizures have gotten much better, they don't last as long and are less frequent, so who knows what might have been if it hadn't happened? l think if we hadn't gone ahead with it l'd feel that we hadn't tried everything we could. l hope they find the focus for you, it will be reassuring to know exactly where they'll be operating, make sure you discuss all possible side effects (memory loss, speech,loss of smell etc) there are so many weird things involved with the left temporal lobe. good luck

Re: Re: Re: Re: Re: Re: Re: Anyone have Lobectomy on Left Fronta

Hi claireb yes we have discussed all the possibilities we even waited 4 months for a special fMRI to be set up for Zacs case ---very blessed i know ny neurologist looked in Melbourne as well for this and he is the one who mentioned Simon Harvey They seem to all work together I know Zacs case has been put to many conference meetings Our peadiatric neuro is Deepak Gill a great doctor who gets along really well with Zac always contactable and able to help in any way He has called in dr Andrew Bleasel who is in the adults world and has alot of experience with this non-lesional epilepsy and our surgeon is Dr Mark Dexter whom i have heard nothing but good things about from various sources we do have to work around some language areas but this can only be dealt with after the grid placement. Mum of Zac/tuckster

Re: Anyone have Lobectomy on Left Frontal Lobe?

My son Steve is 16 years old, he got viral encephalitis at age 13 and now epilepsy secondary to the encephalitis. Currently on 4 meds, Tegretol, Tranxene, Lamictal, Topamax, still has seizures, about 6 a month on average and 97% of them in bed just after falling to sleep or just before waking in the morning. In March 06, he was in the hospital for 13 days for phase 1, vidio eeg monitouring, he had 4 seizures during this stay,ictal spect were done, and they felt they were origionating in the left temporal lobe. But inconclusive so he was scheduled for phase 2.

November 06 admitted to hospital, by the way the hospial is Huntington memorial in Pasadena, California. Dr Sutherlings epilepsy and brain mapping program. Phase two required a frame put on Steves head, after the frame was secured in place, he was wheeled to the O.R. and had 10 holes the size of a pencil drilled into his skull. Into these 10 holes electrodes were inserted, and each electrode had approximately 8 to 10 pickup points on them, so he had about 80 wires or so running to the EEG machine. He had several seizures and with the EEG information and other tests done the doctors began to feel the focus point is in the right frontal lobe, not real good news because of the lower percentage for the surgery to cure the epilepsy, Steve was released the day before Thanksgiving.

Still without enough information to go in and do surgery, the doctors feel he will now need a grid placed on the right frontal lobe and toward the right temporal lobe. They are also talking about the posibility of inserting strips to the temporal lobe so all bases are covered so to say. This is presently scheduled for the 1st week of October 07, this procedure realy has my wife and I concerned because of the posibility of infection, and what we feel will be a deal of pain he will suffer. Should they locate the exact spot or spots, they will then take him right into surgery, if the testing is not successful and does not locate the focas point then Steve will probably no longer be considered a candidate for surgery.

This realy sucks, he has to go through so much and there is a posibility he won't even be eligable to have surgery. I know as parents we all wish we could just be the ones going through this,not fair that kids have to. My wife and I just feel so helpless, all we can do is continue to pray and trust in the doctors who we have full confidence in, Dr Mamalak will be doing the implanting of the grid as he did the electrodes in the last test,and he will do the surgery if they locate the bad spot. Steve is a real sport though, not at all afraid of surgery and just want's this overwith.

So that is our story, all I can say, and I know how terrified you are, is to follow the advice of the doctors. Best of luck to you, your family and son.

Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Thanks I think we are lucky to have this surgery available Steves epilepsy tests sound silmilar to what Zac will have done but without the first frame We managed to get 22 seizures in 3 days on our video eeg stay in hospital so I think this gave the doctors a little to work on We may not be able to have the op untill July as we have Peadiatric neuorolists and adult neurologists working together as well as a fantastic surgeon they want to do the surgery at an adults hospital even though there is a kids hospital a hudred metres down the road (better software available for his case) and because this hasnt been done there on someone so young we have to get special permission so between that and trying to get all the doctors around for 4 weeks together we have a little wait it is a bit nerve wrecking when you are thinking about it all the time but my hubby is great and Zac is fantastic I home school him 2 days a week and he tries to go to school 3 days a week the school are great and very supportive it all helps. Zac is the middle of 5 kids so i guess in one way we are lucky becuase things are always busy and there is not alot of time to dwell on things. Good luck for October and we will keep an update going!!!

Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Tuckster,

It was first hoped afret the vidio EEG that byimplanting the electrodes that would pinpoint the focus point. The frame is secured to the head first, then with the frame secured an MRI is done to show the surgeon the exact place to drill and implant the electrodes in correlation to the frames position on the MRI. Steve said having the frame put on was the worst part of the entire ordeal since he was awake during the process and it was causing him a deal of pain. There are pins on the frame that go into the ears and they apparently have to be tightened enough to position the frame in the proper way before the other 4 screws are tightened into the skull to hold it securly.

Wishing zac the best with phase 2, the grid implant,and surgery following. I wish Steve was able to just have eiter the electrodes or the grid, but not both, it's a lot for the kids and family to go through.

By the way, did Zac have the MEG test and the WADA test done yet?

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

No Zac has a a special fMRI which was developed for his area of brain and needs it is far less intrusive than tha WADA test they don't seem to do that so much in Australia What is a MEG test? don't think I have come accross that in all my research Taa for the info

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Just did some reseaqrch on the MEG test I am pretty sure it isnt available in Australia and I'm sure my doctor mentioned this to us now I think about it his comment was that he didnt think it would give us alot more info for the cost and logistics of doing the test as Zac has has EEG's -numerous SPECT Scans Ictal SPECTS, CT numerous MRI's Functional MRI(fMRI) And numerous PET Scans I think the believe they have covered all bases.

Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Tuckster

One thing I didn't see mentioned about school. Zac is entitled to any extra time or accomodations he may need at schools for homework or tests, and any precautions that he may need. This is in section 504 of the disablities act. But it is up to the parent too initiate this at the school. We have a 504 plan set up at Steves school to allow him extra time for work and tests, when needed.

here is a link that gives an overview of the 504 plan.

http://stillwater.k12.mn.us/csb/teach/pages/StudSupp/ss_plan504.html

Also most communities have a regional center that can be of assistance at times.

One link to California centers.
http://www.dds.ca.gov/rc/RCInfo.cfm

Re: Re: Re: Re: Anyone have Lobectomy on Left Frontal Lobe?

Thanks but we live in Australia and I don't think any such system exists I have been in contact with a clinical nurse who works with our doctor and she has mentioned that if things go under and he gets too far behind we can get some help implementing education stratagies to help him catch up so he won't have to repeat maybe this is an Aussie equivalent The school he attends is fantastic and his teacher great I meet with him every week to get work and go over each weeks needs so that Zac doesnt miss too much He has a gbreat support through his school.

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