Hi to all...

I was wondering if anyone could give me some information (not medical, but maybe personal) on frontal and/or temporal lobectomies. My dad is in a procedure at this moment of figuring out where his seizures are coming. He had the sensors put in his brain on Wednesday and they are planning on leaving them there for 10 days. However, he is having approximately 20 seizures per 36 hours, so they are not sure that they will keep them in that long.

But my question is, does anyone have any experience with frontal or temporal lobectomy? How dangerous is this surgery? I have read upon this as much as possible, and am worried sick. Maybe I shouldn't read so much. I read the statistics, but they don't mean much to me. My dad has had seizures for 20 years. He has a lot of memory loss. Both long term and short term. I know that he won't get that back. But has it decreased and/or stopped your seizures? How is your short term memory after the lobectomy? Better, worse or the same?

Another reason for me asking this, is due to the fact that I too have seizures. Mine are NO WHERE near what my fathers are like. However his started at age 36, mine at age 31. My neuro, however, thinks mine are NES. But he has never done any test to confirm this. I have had two other neuro's who dx them as psychosomatic and he is basing his dx on theirs. He however sent me to a migraine specialist who referred me to Duke Epilepsy Clinic. I have an appt. there on May 1 unless I work through their cancellation list and one opens up quicker. I am keeping a chart that one of the members here was kind enough to give me so that I can show them what happens before and after my seizures. Hopefully, with my dads medical history, my preparedness and my medical history we can figure things out. I don't think I will ever have to have a lobectomy, but I don't ever won't to be naive either.

Please any help any one can give would be greatly appreciated.

M

I don't know a thing about lobectomies, but I betcha there will be somebody along real soon that can help.

Big hugs and I hope you get the answers you need.

Hi M ~
I know almost nothing about a lobectomie either.... I'm not even certain what one is.
Last Feb. I had a tumor removed from my left temporal lobe and a small section of the lobe (the parts the tumor rested against) was removed too. Does "lobectomie" mean the entire lobe being removed?

My experience was what could only be described as, surprisingly, easy for brain surgery. My surgery was early on a Tuesday morning and I was sent home on Thursday morning. I had 14 stitches down the side of my face -- well, starting where I part my hair and ending in front of my ear.

Because they also removed a bit of my hippocampus I did have some trouble with short term memory and word finding.

Happily I did not have a single seizure from Feb. until Nov. Now, to try to find out why the seizures have returned I'm returning to the hospital in March for more tests.

I hope I've helped a bit and I hope others join in. I expect dear Porkette to be here soon.

If I can answer more questions, ask away.

surgical removal of a the lobe (or partial part of the lobe) in which the seizures are coming. Whether it be temporal or frontal. Basically, with my dad, because he has had so many seizures, they need to scrape the scar tissues from the area/lobe and then remove a small portion of this area to help prevent further seizures. But if they feel that he is having to many seizures during this first process and that the lobectomy won't work then they will look into other more depth procedures such as Corpus callosotomy, Multiple subpial transections, Deep brain stimulation. These I don't even understand quite as much and hope I don't really have to read up on them.

But if anyone has any more thoughts, please, it would be appreciated.

Thanks to all of you who have helped so far.

M

Hi M,
I had a right temporal lobectomy in 1994 my neurosurgeon removed 75% of my RTL and all of the right hippocampus. I had a scar on the RTL and sz. for so many yrs. that the sz. spread to the frontal lobe and over to the left side of my brain. The surgery reduced my sz. greatly, I used to have at least 300 sz. or more in a yr. the most I've had since surgery is 171 and that was do to great stress in my family.
I found that having the surgery made me much happier, I'm taking less AED's, and now the only time I have any sz. is when the hormones change. My Dr. told my the surgery wouldn' stop my sz. it would only reduce them so I knew ahead of time what was going to happen but I found it much better since the surgery and I know I've done everything I can. I also looked into a Deep Brain Stimulator but I found I would have to have surgery every 3-6 yrs. after they put the stimulator in me because they would have to replace the batteries and I didnt want to go through that the rest of my life. Here's wishing you and your father only the best and May God Bless You Both!

Sue

Hi M,

I had a RTL in April '05 and it was the best decision I ever made, with regards to my health. I had my surgery done at the Hospital and the University of Pennsylvania, by Dr Gordon Baltuch. It has been a complete success, so far. Up until the surgery, I had had seizures since the age of 4 and I am 46 now. I was having complex partial seizures, but have had none, not even an aura, since the surgery. I waited a very long time, prior to making a decision to have surgery and I would recommend that you and your father investigate fully the use of multiple AEDs to try and control your seizures. If they turn out to be retractable, then do not wait forever to find out if you are a candidate for surgery. Have a VEEG done, which it sounds like you dad might be doing now. That will allow you neurologist to determine whether there is one focus of you seizures or multiple places that your seizures are generatiing from. If one lobe can be isolated as being whare your seizure foci are, then you will most likely then do further testing to determine the potential affects of removing that lobe. In my case, it was the right temporal lobe, so they did a WADA test. There was actually more risk involved with that test, then the actual surgery, as there is a risk of stroke. The idea of the test is for them to isolate one side of your brain at a time, by putting one side asleep at a time and test the awake side for your speech and memory. Your right side of your brain is basically as mirror image of the left, so by putting one side asleep, it allows them to determine wheather you mostly right brained or left brained. As it turned out, I was 90% left brained for speech and memory, which are the major concerns for anyone potentially having surgery on the temporal lobe. Since my seizure focus was in my RTL, then I was pretty much a perfect candidate for surgery, I was extremely fortunate. After getting the go ahead, that I was a candidate, that was not the end of the story. I did not just go into surgery the next week, but began to try to find answer to my concerns, pretty much like you are now. Porkette, and many other on this Board(was Braintalk then) were extermely helpful and provided me with information about their experiences and encouragement, as well. It was not until about a year after my VEEG and WADA test, that I finally had the surgery done. Was a little scary, but I came out it well and my recovery was fairly uneventful. I can still remember coming out the ICU and testing my memory for my social security number and phone number, etc. No problems at all, that was so cool and such a relief. I then, maybe a little later, tried listing to a CD, as I was afraid going in that I would lose my ability to enjoy music, which I love so much. No problems there either. I did initially have some visual deficits created by the surgery, but they did not affect my ability to see and I have adjusted to them occuring over time. So, on the whole the surgery was a success and I would hope that you continue to ask questions and find out whether you are a candidate, simply so you can then be a better position to make a decision about your treatment and not feel as though you have no choice but to accept how things are currently. I hope that surgery is not necessary and that your seizures are controlled without it, but fully investigate your options and your dad, as well. If you continue down that road and have questiions, then do not hesitate to ask here, we will all try to support you.

God Bless,

Barry

Phil 4:6-7 "Do not be anxioius about anything, but in everthing by prayer and petition, with thanksgiving. Present you request to God and the peace of God, which transcends all understanding, will guard your heart and mind in Christ Jesus."

Greetings Hurtsobad73,

Boy oh boy did I take your message to heart. I myself, just like bjholahan was suffering with Complex-Partial (glad to be Petit-Mal) Seizures. It sounds like everyone thus far that I've read who replied to your message was either born with Epilepsy, an illness may have sparked it, or just a happenstance seizure eventually turned out to be something one should really worry about. I, however, had the onset of my Epilepsy due to an unfortunate head trauma from an automobile accident back in Jan. 2000. Now 5 months TO THE DAY after the accident seizures came to be. They were very confusing @ first, even my mother a RN for 22 years was troubled by what was going on. The POUNDING headaches, dizziness, and sense of confusion as to my where-abouts was very frightening. When the taste-and smell came on though(typical of Partial Complex), getting an MD was nothing but MANDATORY. I was living in NC at the time so DUKE held the highest recommendations, but nowhere near accurate in making a diagnosis. After returning to PA, and seeing a Neurologist @ Hershey Medical Center for just over 3 years who told me she had been to some type of conference I believe it was, and once again was intrigued & very interested in the Temporal Lobectomy Sugeries to treat Epilepsy patients. To further advance my treatment and even eliminate (I know there is no cure) my Seizures, she spoke of Dr. Brian Litt @ University of Pennsylvania in Philly. My profile was sent over to Penn and within a week I was asked to come in for VEEG like bjholahan did. 1 week after the video imaging was all looked over and my Seizures were localized in the Right Temporal Lobe, the surgery was full-steam go-ahead!!! I also did the WADA test, very interesting I must say. May 4th, 2004 had to be one of the scariest days of my life. Knowing the risks of the surgery but also the success ratings I faced the emotions, and entered the operating room. Under the care of Dr. Gordon H. Baltuch and his esteemed colleagues, just 4 hours later, I was in recovery and home within 2 days. The complete surgery was a Right Temporal Lobectomy and Hippocampus (vitally important in memory) removal. I have been fine with the exception of 3 episodes ever since. The first was a Seizure triggered by an EEG that I had to evaluate the severe headaches I suffer and have suffered since the head trauma (so nothing from the surgery). The other two I'll call them "episodes" were Nocturnal Seizures, only occurring in my sleep. Only having good results, I find myself giving longer explanations to those who question the procedure I'll end this long entry. I wish you and your Father only the best in making your decision. I made mine and it changed my life. I'm back in school and driving, pursuing my degree in Physical Therapy. If I could only approach the doctors who the night of my head trauma were telling my parents, "Mam, Sir, your son won't live, if he does come out of his coma the probability of him living a normal life is extremely low, I'm very sorry"...I'd like to say, "DO YOU REMEMBER ME?"
Good Luck & GOD Bless,
Dave
Clutch8185@aol.com

OOPS, I posted that thread and didn't answer a few of the questions too clearly. The surgery is of risk, there is a chance of morbidity with any surgery. As far as the decrease/elimination of my Epileptic activity, like I said in my initial posting, I've since the surgery in May 2004 only had 3 epileptic events. At the initial onset of my Epilepsy, I was @ one point having 12-14 seizures A DAY on AVERAGE--so marked improvement I'd say. Now the memory question...hmm, that's one I wish I would never be asked, it is troubling for memory status to remain stable and as efficient prior to the operation. My greatest challenge(s) since the injury have been my speech dysfluency has greatly increased, since the surgery however my speech fluency has improved though. Secondary to the challenge I face with my interrupted speech patterns is my STM or short term memory. LTM isn't a problem at all really, I can still shoot out friends phone #ers I had in the 3rd grade. Now @ the age of 25, being back in school and being troubled with STM difficulties makes me work harder w/out a doubt. Because the trauma was @ such a young age I've undergone several Neuro-Psych examinations and the most recent of my results revealed that in a sense I've almost "re-wired the brain" and am now compensating for the brain's surgically removed RTL and Hippocampus and am able to "somewhat" keep pace with others because the left hemisphere is working all that much harder now. So with the so called "re-wiring" that the physicians feel I've successfully been able to accomplish, my STM is improving but will never be how it once was in the days prior to my accident. But with hard work, determination, and the continued guidance and support that are offered to me by those dearest to me improvement in successful progression. I'm sure your father will do the same if he finds himself in any scenario similar to mine. HAPPY EASTER!
GOOD LUCK WITH YOUR DECISION,
Dave
Clutch8185@aol.com

I would advise against a lobectomy unless all other avenies have been explored. 99.9% of neurologists and neurosurgeons believe that seizures originate in the brain and refuse to search for causes outside the brain. I have argued endlessly with these people in newsgroups.

My opinions are based upon my own experience and though I explain what happened to me, even my own neurologists just can't believe what happened.

After falling from a ladder many years ago i started having very minor episodes of what was later diagnosed as simple partial seizures or temporal lobe seizures. Over the years these became worse and worse evolving into full blown simple partials that were becoming debilitating. The awful medications were started.

The only way we discovered the source of my seizures was that I developed other problems. I started having tingling in my feet and my sinuses stopped functioning. MRIs finally showed that I had a large ruptured disk in my neck and chronic sinus.

An ENT fixed my sinuses and a neurosurgeon fixed the ruptured disk in my neck. After a few months the seizures disappeared and I stopped the medication. I have not had a seizure since.

I once ran a newsgroup about seizures and we had some good results. One woman's 16 year old was having seizures and doctors of course only wanted to medicate. She had her daughter checked by an ENT doctor who discovered a tumor in one of her sinuses. After the tumor was removed, the seizures went away. Ask a neurologist if this can happen and they will say, no, it was just a coincidence.

One man in this group had subjected himself to brain surery and said much of his brain had been removed, resulting in loss of emotions, etc. Only problem was that he was still having nasty seizures. When I asked if anyone had every checked his neck or sinuses, he said no, but it was interesting, for he had played football all through high school and he had many neck injuries.

I recommend that anyone with any type seizures insist on exploring the head and neck for possbile injury or other possible causes.

Neuroloigsts and other doctors can be very hardheaded in their beliefs--especially if it varies from what they were taught in school. I have learned to be my own doctor and to explore every problem myself.

Good luck, Aeolusblue

First of all I would like to thank you all for your information.

Clutch8185, my Dad is having his lobectomy on Wednesday May 2. He (and I) are (normally) anxious and a little afraid, but weighing the options of having 25-30 seizures a day, this is the better choice. We know they are localized to the right temporal lobe and we trust his surgeon. So thank you for your input and support. I am sorry as to what had happened to you at such a young age. I am living in NC also and have an appt at the Duke Epilepsy Clinic tomorrow May 1. Then I have to race to WV (well my husband has to race, since I can't drive) to make it in time for Dad's surgery. So a lot of stress, which is one of my triggers. Hopefully my appt will just be a consult and I will have enough info for the doc to look at and make another appt to talk about where to go from here.

Aeolusblue, I can definitely see your viewpoint in my own personal history with seizures. As a young girl I had both collar bones broken, many injures with gymnastics located in the neck (none severe enough to go to the hospital, just a lot of twisting and so on), but I also have chronic sinusitis. I have had sinus surgery once already in 2000, but it really didn't help my sinuses. My first seizure has in late 2003 after which in the middle of 2003, I had a complete hysterectomy for stage 4 Endometriosis. So I will definitely ask the specialist I see tomorrow May 1 about the possibility of the connection of neck and sinuses. Thank you so much for your information.

M