Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Glad to hear you're feeling better and relieved to hear you're coming off such a high dose of Tegretol. They put me on it in the hospital and as I was leaving with my father (a physician)I got very dizzy at the top of the stairs, lost my balance and just toppled forward. If he hadn't caught me... Needless to say, that was the last Tegretol I ever took. Funny as this might sound, I think you were fortunate to have your epilepsy in an operable location. Mine isn't so I'm on life meds but the lowest dose possible of Epival which has been a WONDERFUL drug. No grand mals since regimen began in 1982! Except for weight gain, there have been no side effects and I would recommend anyone with petit mal to ask their doctor about it. It may be called something else outside of Canada...the name on my bottle is " Apo-Divalproex " (valproic acid). Anyway, my name is . I'm 47 and was diagnosed at 7 when I started having seizures at recess and had one in the class - fell right out of my desk. That's when the kids started teasing me and I actually got kicked a few times when I was unconscious outside. The kids would leave me out there too and I'd wake up sometimes and not know where I was and have to wait till my legs would work to get back inside. We all have stories to tell...and I look forward to " meeting " the group. ~Cat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Congratulations. " Liz " <m07sys@... > To Sent by: <Undisclosed-Recipient:;> @yah cc oogroups.com Subject [ ] 3 Years 12/01/2006 09:44 PM Please respond to @yah oogroups.com Yesterday marked my 3 year anniversary after surgery and 3 years of total freedom from seizures and auras. Yesterday I also had my 3 year follow up with the doctors and everything went well. They've now asked me to taper Tegretol to 400 mg per day from the present 600 mg per day - a big achievement overall, considering the fact that I was on high doses of 5 kinds of meds at one point of time. Wishing everyone the very best. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 What kind of surgery,meaning where on the brain they operated ,and what seizures did you have before? And,CONGRATULATIONS,FANTASTIC NEWS, I am very happy for you! Jasmina Naleid On 12/1/06 6:44 PM, " Liz " <m07sys@...> wrote: > > > > > Yesterday marked my 3 year anniversary after surgery and 3 years > of total freedom from seizures and auras. Yesterday I also had my > 3 year follow up with the doctors and everything went well. > They've now asked me to taper Tegretol to 400 mg per day from the > present 600 mg per day - a big achievement overall, considering > the fact that I was on high doses of 5 kinds of meds at one point > of time. Wishing everyone the very best. > > Liz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Jasmina, What I had was an ATL surgery on my left temporal lobe for medically resistant complex partial seizures due to Mesial Temporal Sclerosis. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 While surgery is definitely a possible alternative treatment but one has to be cautious about such irreversible procedure. My son's previous neurologist pushed strongly into surgery as a treatment option but I decided against it because the success rates highly depend on the location of the primary focal point. While temporal lobe seizures have relatively high successful outcomes, that is NOT the case for frontal lobe seizures. As of last year when I looked into frontal lobe surgery, not only is the success rate low and varies quite a bit depending on which medical journal paper you read but equally important is the fact the longest follow up was only 5 years. Surgery can also be viewed upon as a dramatic impact on the brain. Until longer term study is in place, I advise getting several medical opinions. For example, my son's current neurologist views surgery not as an option but as a last resort. CY Liz <m07sys@...> wrote: Jasmina, What I had was an ATL surgery on my left temporal lobe for medically resistant complex partial seizures due to Mesial Temporal Sclerosis. Liz --------------------------------- Need a quick answer? Get one in minutes from people who know. Ask your question on Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 CY, I have to agree as well as disagree :-) I agree fully that surgery is most suited to temporal focus seizures as of now. Extra temporal seizures, especially frontal ones mostly require Phase II invasive analysis because of the sheer volume of the frontal lobe and the rich callosal connections it has. Extra temporal surgery outcomes are currently not as good as temporal ones and for that matter even in temporal cases, one shouldn't have bilaterally independent focii either. Perhaps as new technologies like magneto encephalograph and gamma knife develop, things could change in the future. I must mention that your notion of longest follow up of 5 years is completely wrong. In some of the related email groups, there are people who are seizure-free for 15 years after surgery. Surgery for epilepsy has been around for more than a couple of decades; it gained popularity only since the last decade. Perhaps for your son, the neuro considers surgery as a last resort because of frontal origin. But I must mention here that it is so tragic to find practising neurologists not considering surgery even in surgically amenable cases. A classic example is my own previous neurologist, who despite knowing from my MRI that I have a surgically amenable epilepsy, was happy prescribing drug after drug for several years until I was on very high doses of 5 kinds of meds, yet with no seizure control. Once it so happened that a new drug prescribed by him left me in a semi-coma stage and I had to be rushed to a nearby junior neurologist as my regular neuro was not available that day and his place was far off. That was the turning point in my life. After the initial review of my history, prescriptions and MRI, the junior neuro asked my husband, if I have ever been asked to undergo a surgical evaluation. When the answer was a " No " , he was completely surprised. His reply was : " No doctor in the 20th century treats an epilpetic with 5 drugs " . That day we decided we should consult an epileptologist at a comprehensive epilepsy center rather than a neurologist. On the very first visit itself they gave an appointment for a video EEG and said, " It seems like you are a perfect surgical candidate, we only need a confirmation on a video EEG " . After getting a confirmatory EEG result, I had to wait one year for my turn for surgery. During this period, I was completely taken by surprise by their radically different way of treatment. They wanted me to slowly wean off 3 of my 5 drugs. They said by the time I go in for surgery, they wanted me to be on just 2 meds, even if that meant my seizure frequency goes up in the intervening period ! - a completely different approach. After the surgery 3 years back I have not had a single seizure or a warning aura. Plus I'm now on a low dose of just one med. I'd also like to ask another point here. Yes I agree, surgery is irreversible (but who wants to reverse it ?). But then if I do not undergo surgery and continue with the tons of meds, how about the irreversible damage the continuing seizures in the temporal lobe is inflicting on my memory ? When seizures start on my left side and then spreads to the right half, how about the damage it does to the healthy tissue on my right temporal lobe ? How about the long term side effects of all the 5 meds I was consuming in high doses ? (Now I only have to live with the side effect of a low dose of one med). How about the compromised quality of life ? The opponents of surgical treatment do not have answers to these. Moreover for medically refractive unilateral temporal lobe epilepsy (who comprise a significant portion of all partial onset seizures), surgery is the preferred line of treatment with modern epileptologists rather than a last option. It is a crime on the part of a medical practitioner to keep a patient customer to himself when he/she can be offered a proven alternative. IMHO, a medical practitioner should never be given a lifetime license to practice. There should be periodic competence review systems in place. According to a recent national study, 50 to 60 % of all prescriptions are either wrong or useless ! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 Liz - Did you mention where you had your surgery? You may have said that but I missed it. We took our daughter (then age 7) to Chicago to see Dr. Kanner to see if she was a surgery candidate. He said that her type of epilepsy usually burns out at puberty but if it doesn't she would be a good candidate for surgery( multiple subpial transection), because she has a clear focus on her nondominant side, she has LKS. My question is, does age make a difference in recovery? - Martha > > CY, > > I have to agree as well as disagree :-) > > I agree fully that surgery is most suited to temporal focus seizures as of now. Extra temporal seizures, especially frontal ones mostly require Phase II invasive analysis because of the sheer volume of the frontal lobe and the rich callosal connections it has. Extra temporal surgery outcomes are currently not as good as temporal ones and for that matter even in temporal cases, one shouldn't have bilaterally independent focii either. Perhaps as new technologies like magneto encephalograph and gamma knife develop, things could change in the future. > > I must mention that your notion of longest follow up of 5 years is completely wrong. In some of the related email groups, there are people who are seizure-free for 15 years after surgery. Surgery for epilepsy has been around for more than a couple of decades; it gained popularity only since the last decade. > > Perhaps for your son, the neuro considers surgery as a last resort because of frontal origin. But I must mention here that it is so tragic to find practising neurologists not considering surgery even in surgically amenable cases. A classic example is my own previous neurologist, who despite knowing from my MRI that I have a surgically amenable epilepsy, was happy prescribing drug after drug for several years until I was on very high doses of 5 kinds of meds, yet with no seizure control. Once it so happened that a new drug prescribed by him left me in a semi-coma stage and I had to be rushed to a nearby junior neurologist as my regular neuro was not available that day and his place was far off. That was the turning point in my life. After the initial review of my history, prescriptions and MRI, the junior neuro asked my husband, if I have ever been asked to undergo a surgical evaluation. When the answer was a " No " , he was completely surprised. His reply was : " No doctor in the 20th century treats an epilpetic with 5 drugs " . That day we decided we should consult an epileptologist at a comprehensive epilepsy center rather than a neurologist. On the very first visit itself they gave an appointment for a video EEG and said, " It seems like you are a perfect surgical candidate, we only need a confirmation on a video EEG " . After getting a confirmatory EEG result, I had to wait one year for my turn for surgery. During this period, I was completely taken by surprise by their radically different way of treatment. They wanted me to slowly wean off 3 of my 5 drugs. They said by the time I go in for surgery, they wanted me to be on just 2 meds, even if that meant my seizure frequency goes up in the intervening period ! - a completely different approach. After the surgery 3 years back I have not had a single seizure or a warning aura. Plus I'm now on a low dose of just one med. > > I'd also like to ask another point here. Yes I agree, surgery is irreversible (but who wants to reverse it ?). But then if I do not undergo surgery and continue with the tons of meds, how about the irreversible damage the continuing seizures in the temporal lobe is inflicting on my memory ? When seizures start on my left side and then spreads to the right half, how about the damage it does to the healthy tissue on my right temporal lobe ? How about the long term side effects of all the 5 meds I was consuming in high doses ? (Now I only have to live with the side effect of a low dose of one med). How about the compromised quality of life ? The opponents of surgical treatment do not have answers to these. Moreover for medically refractive unilateral temporal lobe epilepsy (who comprise a significant portion of all partial onset seizures), surgery is the preferred line of treatment with modern epileptologists rather than a last option. It is a crime on the part of a medical practitioner to keep a patient customer to himself when he/she can be offered a proven alternative. IMHO, a medical practitioner should never be given a lifetime license to practice. There should be periodic competence review systems in place. According to a recent national study, 50 to 60 % of all prescriptions are either wrong or useless ! > > Liz > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Martha, I'm from India and I had my surgery here in India. The seizures due to LKS usually die out by adolescence. On your query on significance of age, what I've read is that for LKS, if the onset of aphasia is age 6 or later, the prognosis is still better. Meanwhile I hope you are aware of the online support group FOLKS based in the UK for parents of LKS patients. Btw, just out of curiosity, can I ask you if she had an MMR shot before aphasia onset, as I remember having read about MMR shots triggering LKS in few cases. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 I have 2 sons with absence seizures that started around age 4,5. What is LKS and how do you test for it? Thanks --- Liz <m07sys@...> wrote: > Martha, > > I'm from India and I had my surgery here in India. > > The seizures due to LKS usually die out by > adolescence. On your > query on significance of age, what I've read is that > for LKS, if > the onset of aphasia is age 6 or later, the > prognosis is still > better. Meanwhile I hope you are aware of the online > support group > FOLKS based in the UK for parents of LKS patients. > Btw, just out > of curiosity, can I ask you if she had an MMR shot > before aphasia > onset, as I remember having read about MMR shots > triggering LKS in > few cases. > > Liz > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Liz, First, I do not oppose surgery but only advise caution. Regarding long term follow-up, I am sure that through some special interest group, you will find successful outcomes for more than 5 years. However, as a researcher I tend to look at scientific control studies and reports. I apologize for not being clear. The long term study up to 5 year is based on medical journal publications. Since it was 1-2 year ago I did my investigation, I cannot say that there is no more longer medical studies now. Even we know someone is seizure free 15 years after surgery, we still have to ask the question of probability and other possible complications. For example, is 2% success rate a good enough number? Also, even if seizures cease, are there other complications? For example, are there impairments in executive functions after surgery? if there is, is it an isolated case or are there statistical significance. Scientific based reports and medical journal publications typically have gone through peer reviews and thus add comprehensiveness and accuracy in the reporting. Each in life seeks his or her direction and decision. Unfortunately, medical problem such as epilepsy is so complicated that one cannot even say a decision based on scientific approach is better than hearsay or vice versa. To some, comprehensiveness and accuracy are important elemments for his or her decision making. Cy Liz <m07sys@...> wrote: CY, I have to agree as well as disagree :-) I agree fully that surgery is most suited to temporal focus seizures as of now. Extra temporal seizures, especially frontal ones mostly require Phase II invasive analysis because of the sheer volume of the frontal lobe and the rich callosal connections it has. Extra temporal surgery outcomes are currently not as good as temporal ones and for that matter even in temporal cases, one shouldn't have bilaterally independent focii either. Perhaps as new technologies like magneto encephalograph and gamma knife develop, things could change in the future. I must mention that your notion of longest follow up of 5 years is completely wrong. In some of the related email groups, there are people who are seizure-free for 15 years after surgery. Surgery for epilepsy has been around for more than a couple of decades; it gained popularity only since the last decade. Perhaps for your son, the neuro considers surgery as a last resort because of frontal origin. But I must mention here that it is so tragic to find practising neurologists not considering surgery even in surgically amenable cases. A classic example is my own previous neurologist, who despite knowing from my MRI that I have a surgically amenable epilepsy, was happy prescribing drug after drug for several years until I was on very high doses of 5 kinds of meds, yet with no seizure control. Once it so happened that a new drug prescribed by him left me in a semi-coma stage and I had to be rushed to a nearby junior neurologist as my regular neuro was not available that day and his place was far off. That was the turning point in my life. After the initial review of my history, prescriptions and MRI, the junior neuro asked my husband, if I have ever been asked to undergo a surgical evaluation. When the answer was a " No " , he was completely surprised. His reply was : " No doctor in the 20th century treats an epilpetic with 5 drugs " . That day we decided we should consult an epileptologist at a comprehensive epilepsy center rather than a neurologist. On the very first visit itself they gave an appointment for a video EEG and said, " It seems like you are a perfect surgical candidate, we only need a confirmation on a video EEG " . After getting a confirmatory EEG result, I had to wait one year for my turn for surgery. During this period, I was completely taken by surprise by their radically different way of treatment. They wanted me to slowly wean off 3 of my 5 drugs. They said by the time I go in for surgery, they wanted me to be on just 2 meds, even if that meant my seizure frequency goes up in the intervening period ! - a completely different approach. After the surgery 3 years back I have not had a single seizure or a warning aura. Plus I'm now on a low dose of just one med. I'd also like to ask another point here. Yes I agree, surgery is irreversible (but who wants to reverse it ?). But then if I do not undergo surgery and continue with the tons of meds, how about the irreversible damage the continuing seizures in the temporal lobe is inflicting on my memory ? When seizures start on my left side and then spreads to the right half, how about the damage it does to the healthy tissue on my right temporal lobe ? How about the long term side effects of all the 5 meds I was consuming in high doses ? (Now I only have to live with the side effect of a low dose of one med). How about the compromised quality of life ? The opponents of surgical treatment do not have answers to these. Moreover for medically refractive unilateral temporal lobe epilepsy (who comprise a significant portion of all partial onset seizures), surgery is the preferred line of treatment with modern epileptologists rather than a last option. It is a crime on the part of a medical practitioner to keep a patient customer to himself when he/she can be offered a proven alternative. IMHO, a medical practitioner should never be given a lifetime license to practice. There should be periodic competence review systems in place. According to a recent national study, 50 to 60 % of all prescriptions are either wrong or useless ! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 Yes she had all of her shots. Hers started around age 4 but it is hard to pin down since her symptoms sort of came and went for a couple years until she lost almost all speech at age 7. She is talking really well now, age 9, but she has major dyslexia and can read only sight(memorized) words in 3rd grade she writes everything backwards. Our neuro says she will be fine and she will learn to turn everything around. I don't know, it sure is a struggle for her now. I search daily for the cause of her LKS. Yes, I belong to the other LKS groups but am trying to figure out the whole epilepsy thing. 2 other children who lived 2 houses down from us in our old neighborhood have seizures also(we moved 2.5 yrs ago), I always wonder if it was the well water or what. There had been an old WWII war camp years ago. Always wondering - Martha > > Martha, > > I'm from India and I had my surgery here in India. > > The seizures due to LKS usually die out by adolescence. On your > query on significance of age, what I've read is that for LKS, if > the onset of aphasia is age 6 or later, the prognosis is still > better. Meanwhile I hope you are aware of the online support group > FOLKS based in the UK for parents of LKS patients. Btw, just out > of curiosity, can I ask you if she had an MMR shot before aphasia > onset, as I remember having read about MMR shots triggering LKS in > few cases. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2006 Report Share Posted December 9, 2006 It can only be diagnosed after, at least, a 24 hr EEG. The hallmark of the disease is a loss of language. My daughter was a little different in that it took her a long time to lose her speech. She had little blips called benign rolandic episodes on her daytime EEG. The first hospital we went to told us this was normal, THEY WERE WRONG!!! What happened was when she went to sleep those little blips went nuts all night long. We finally went to Clevleand Clinic where she was diagnosed as LKS she regained her speech after a few months on steroids. It was a miracle - Martha > > > Martha, > > > > I'm from India and I had my surgery here in India. > > > > The seizures due to LKS usually die out by > > adolescence. On your > > query on significance of age, what I've read is that > > for LKS, if > > the onset of aphasia is age 6 or later, the > > prognosis is still > > better. Meanwhile I hope you are aware of the online > > support group > > FOLKS based in the UK for parents of LKS patients. > > Btw, just out > > of curiosity, can I ask you if she had an MMR shot > > before aphasia > > onset, as I remember having read about MMR shots > > triggering LKS in > > few cases. > > > > Liz > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 wow!! congratulations!! Let's have a party.. ( breaking out the party hats and horns) May you have warm words on a cold evening, a full moon on a dark night, and a smooth road all the way to your door. [ ] 3 Years Yesterday marked my 3 year anniversary after surgery and 3 years of total freedom from seizures and auras. Yesterday I also had my 3 year follow up with the doctors and everything went well. They've now asked me to taper Tegretol to 400 mg per day from the present 600 mg per day - a big achievement overall, considering the fact that I was on high doses of 5 kinds of meds at one point of time. Wishing everyone the very best. Liz Quote Link to comment Share on other sites More sharing options...
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