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surgery at 40

I was diagnosed with grand mal seizures at the age of 13. I was really scared about the hole situation at hand, i have heard that there are surgerys that can help, but not sure if it is right for me...I have been seizure free for almost 5yrs now. I also found out that the medication that i take causes weight gain and liver damage. If there is anyone out there that has had any of the surgerys that they perform on seizure's can you please write back...... thanks 4 your time

Comments

RE: surgery at 40

Hi, I'm 22 and just had one of the surgery's that they can perform last Sept. Of course I was really scared, but I wanted to at least try it. My seizures are coming from both sides of my brain which makes my chances very little, but I still wanted to take that chance. I was in the hospital for about a week. I won't lie, of course it hurt, but look at what they had to do. I feel a lot better now. But if you have any chances, my advice is to do it. Better than having these stupid seizures. So far I still have mine. In the last month though, they have lessoned. So hopefully they will lesson to nothing. Good luck

RE: surgery at 40

HI,,MY NAME IS 'TRACEY' & I HAVE HAD BEEN DIAGNOSED WITH 'EPILEPSY' SINCE 'BIRTH',,,THEY'VE JUST NOW TOLD ME I NEED 'SURGERY' 2,,(KNOW EXACTLY WHAT YOU'RE GOING TROUGH) BUT HAVE ALSO BEEN TOLD BY OTHER'S (WITH EPILEPSY) THAT I ''SHOULD' NOT DO THIS,,WHERE AS IT COULD CAUSE 'MORE' DAMAGE',,,YET MY 'NEUROLOGIST' SAY'S BY DOING THIS , COULD COMPLETELY 'CURE' MY 'EPILEPSY',,,(I APPARENTLY HAVE 'SEVERE-TISSUE-DAMAGE') ON LEFT-SIDE OF MY BRAIN,,"WITH 'PLAQUE",,?? ANYWAY,,I TOTALLY FEEL LOST & UNSURE WHAT 2 DO EITHER,,SO IF YU COULD HELP ME,,OR JUST CONTACT ME 4 ADVICE (JUST SOMEONE THAT KNOW'S WHAT IT'S LIKE LIVING WITH 'EPILEPSY') I WOULD ''TRULY'' APPRECIATE IT,,,, I COULD ALWAY'S USE A ''TRUE-FRIEND",,,,,THANX 4 YOUR TIME,,,TRACEY,,,,,,

RE: surgery at 40

I'm no expert, but I wonder why you would want to go through such a surgery if your seizures have been controlled for 5 years. Is your main concern weight gain and possible liver damage? There are risks and side effects for every procedure (and medicine) out there, you have to weigh the good and the bad of each. Usually, doctors won't recommend surgery unless your seizures are severe and/or very difficult to control. From what I've read, even after surgery, people still need to be on AED's because surgery doesn't fully get rid of seizures. I'm not sure if the same is true for vagus nerve stimulation. My advice would be to talk with your doctor to see if you are a good candidate for any procedures. Ask him or her what your chances are of having seizures afterwards. Would you still need to be on AED's? What are your other options? There are lots of medications out there. If you are at high-risk for developing liver problems, maybe you could switch to another.Best of luck!Heather

RE: surgery at 40

Surgery should be a last option. Weight gain isn't the worst thing unless it is alot, and maybe someone else can adress that. Your liver filters every chemical you put in your body, that's it's job. Ibuprofen is just as hard on your liver as many "drugs". I off set that by drinking as much water as I can, the purer the better.

RE: surgery at 40

I hope you will explore the "Treatment" section of epilepsy.com to read more about epilepsy surgery and the other options now available. You can also find lots of "People Stories" (in the "Living with Epilepsy" section) in which people who have had surgery tell about the experience and what has happened to them since then. It does seem doubtful that a doctor will recommend that you have surgery if you haven't had any seizures for 5 years. You don't say whether you are having any serious side effects now from your medication. Many seizure medicines have the potential to cause liver damage but it only happens to a small number of people. Many new seizure medicines have come on the market in the past decade or so. If you are concerned about the one you're taking, talk it over with your doctor, after reading about it in the Seizure Medicines section of epilepsy.com!

RE: surgery at 40

i have had epilepsy for 16 years and do not get any warnings i would like to consider the surgery but do not know if i will be able to do it i would be greatfull if any one has had any experence at this

RE: RE: surgery at 40

if your doctors have done extensive testing and determined that you are a strong candidate for surgery, then you should decide how much the seizures impact your life. Will they get worse? The actual surgery for me, right front temporal, was not painful and was an investment of a few months to no longer have seizures. I had the surgery at 43 years of age. It's a very personal decision, the actual experience for me was uncomfortable but not painful. After a few months i was back at my benchmark. There's much worse in life than having surgery; if you chose to have it you will likely be a much stronger person for going through the experience. Make sure your friends and family are near by to be supportive.

RE: RE: RE: surgery at 40

RichardShane,I am about to have Left Temporal Lobe surgery in a couple of weeks. Tell me more about your surgery.Dianadfriedman@sbcglobal.net

RE: RE: RE: surgery at 40

Richard,I am about to go through surgery.  What type of seizures did you have before surgery? Diana

Re: RE: RE: surgery at 40

Surgery at 48? I am 48 years old and have been having seizures since I was 18 months old. I have been diagnosed with epilepsy and have been on medication for close to 15 years; however, all my medication I've been on (three different medicines at this time) have never had complete control of my disorder. I am a court reporter and have to be 100% alert and am usually working 24/7. Last month I awoke to find myself in my new car with my airbags deployed after hitting a brick mailbox in my neighborhood. Thank God it was the mailbox! At that time I quit driving (my husband's wishes) and contacted my doctor. They are now doing tests on me and preparing me for surgery. I do have left temporal lobe scarring and have had all the tests they plan to do except for the neuropsychcological 8-hour test and the WADA, which are scheduled for April of 2006. If there is anyone out there that could share the after-effects of their surgery with me, I would really appreciate that! I am a workaholic and would really like to get back to my job ASAP - with an excellent memory and the ability to remember all that I remember now, for my worklife, that is. My memory is already a problem due to my medication. However, it has had no effect YET on my working life.
BAU

Re: Re: RE: RE: surgery at 40

Hi BAU

I had a left temporal lobectomy on 11/15/05 - I am 41 years old. I have been treated for siezures for about 12 years. We were not able to find any meds that kept me siezure free. Over the past year I had completed various testing which included a week long hospital stay waiting for siezure occurrences to pinpoint the area which was damaged, the WADA, various CAT scans, MRIs and the 8 hour nueropsychological testing. I took the time to think about the risks, research the surgery, the results of the surgery, etc. after I was told that I was a good candidate for the surgery. At this point I do not have any regrets to having the surgery. The surgery lasted approx. 6 hours, I was out of the hospital two days after the surgery, was on mild pain meds for a week after, then back to work on a PT basis three weeks after the surgery, then full time four weeks after the surgery. I work in an office and I deal with a lot of math calculations, phone conversations with attorneys and individuals regading domestic situations. At this time I can't say I notice a big change in any direction...specifically of my memory being better or worse. I understand better short term memory could take a while, but I can say that I don't have an exclusive bad memory problem which limited my lifestyle. I am a single Mom of an 11 year old daughter and have local family, friends and a generous employer that have been very supportive and helpful. I feel that the support was a big help in deciding to go ahead with the surgery. Two days after my surgery my Mother entered the hospital and three days later was diagnosed with cancer and given a six month life expectancy. I can say that my Mom's diagnosis put a lot in perspective with the feeling that the temporal lobectomy might have been a bad choice that I made... but it is a surgery that has occurred and has been successful many times... which compared to treatment of the type of cancer that my Mom has it has not been successful for many years. My point is that if your neurologist is suggesting that you are a good candidate for the surgery, you should trust the doctor's knowledge and experience with the results of the surgery based on your situation. The biggest negative that I can point out is the problem with my driver's license being suspended. I know my state has laws requiring the neurologist have your license suspended through the state....but I can understand why, but it can be frustrating!
Best wishes for making a choice that satisfies your thoughts.

Amy

Re: Re: Re: RE: RE: surgery at 40

Amy,
Thank you for your response regarding your surgery. I was wondering if you were still on any medication and, if so, what and how much you were still taking. I was also wondering how much of your hair was shaved, if any, before the surgery. Vanity on my part!
BAU

Re: Re: Re: Re: RE: RE: surgery at 40

Hi Bau

I am currently on Lamictal taking 150 mg in a.m. and 225 mg in p.m. my neuro has advised that I will be on the meds for a few more years, and will continue to taper off during that time.
Regarding hair shaving! The area shaved was totally around my ear, approx. 4 inches above and behind my ear. The area that was cut was in the shape of a question mark...starting above the ear at the hairline, rounding into a half circle, then ending in front of the ear. Some friends have pointed out that it is pretty funny that I had an incision cut in the shape of a question mark in my head! As hair grows back it is covering the incision and it will not be easy to see. Another FYI is that after the surgery, gauze was wrapped totally around my head, and when the surgeon came to follow up he pulled the gauze up off my head..I was expecting lots of stitches, etc, but the incision on my scalp was closed with a type of glue...it is amazing! I was told the cranium incision is closed up with a type of metalic, but I won't have problems going through metal detectors. I was able to completely shower, including washing my hair three days after the surgery. I put several thoughts into shaving, getting very short cut, etc. prior to surgery, but instead I just let the surgery team do what needed to be done. The shaving was done after anesthetics kicked in, so I did not have to see or feel it being done. At this point I don't have much of a problem with it, I know I get some looks sometimes and my daughter likes watching people look at my head wondering why I have a goofy haircut!
Besh wishes
Amy

Re: RE: RE: surgery at 40

My last Seizure was june,6,2006 I have Grand-mal and I got no warning signal before that Seizure. See I was 2 yrs Seizure free and then wham-o out cold on the floor at work, there went my long term disabilty at work. My Seizures are very bad, loose consiuosness, jerk vilently by what others told me, no warning at all. I will be asking my doctor about surg or I can forget about ever driving and not having a normal life. Meds are causing all kinds of side affects. Anniemarie

RE: surgery at 40

Hi,  I'm 42 and like you I'm facing Surgery for Complex Partial Seizures.  The only difference is yours ore completely controlled, mine aren't.  I take Trileptol, Keppra & Zongran and still am having seizures every two - three months. I was up to six months inbetween at one time.    As far as weight is concerned I had gained a lot of weight and was extremely fustrated but then I discovered that a good low carbohydrate diet is all you need to control your wieght.  I've lost over 60lbs!  I feel great.    I'm scared about doing surgery because I'm afraid of lossing my memory, of the time away from my kids and husband and reusing a normal life style.  Let alone the pain you have to endure.  I've heard the drilling is the most horrible part to live through in all your life!  But at the same time if I don't go through the surgery I face like you say a bad liver from all the meds I been taking for years, and my memory will indeed get worse and worse through the years. It's hard to make the right decision you just have to weigh all the pros and cons and do what is right for you with all the facts, knowing what your facing, is the way I look at it.  I need all the information I can get and anyone who can give me info and experience I'm open so I can make the decsion for me.  Good luck to you, I will be interest to hear what you choose to do and if you do have surgery how it goes!    WS     

RE: RE: surgery at 40

Wendy,I had surgery when I was 20.I had it on my RTL in Montreal,Canada in 1982.I was in Canada for 3 months altogether with my surgery and the testing.They suspected my seizures were on both sides but weren't sure.I was diagnosed when I was 2 and I've had seizures for 40 years.I've taken 18 different drugs for epilepsy that don't work for me.I have refractory epilepsy.Trileptal I'm allergic to Zonnegran I've taken and Keppra I'm allergic to.I also have complex partial seizure,Atonic sz's Absence and Tonic-clonic sz's.My husband has epilepsy had surgery in 1972 on his LTL and hasn't has a seizure since.I have a good memory it was when I came off Dilantin it improved.I take Tegretol,Felbatol,Topamax,Klonopin.Ialso have a VNS since 2000. Belinda

RE: RE: surgery at 40

WS wrote:> I'm scared about doing surgery because I'm afraid of lossing my memory, > of the time away from my kids and husband and reusing a normal life style.  > Let alone the pain you have to endure.  I've heard the drilling is the most horrible > part to live through in all your life!I had no memory loss (well, my memory's not as good as it was when I was 20, but... I'm no longer 20, either!)I was in the hospital for a total of three stays, 5 to 7 days for each of the first two (evaluation), and four days for the final one (surgery).The pain was significant, but it was "only" a very bad headache... and, they gave me powerful painkillers to take the edge off that pain.  (The painkillers didn't completely eliminate it, but they did make it bearable.)  My epileptologist was, also, wonderful about follow-up care, and making sure I could reach someone skilled to deal with those first few days after the surgery, including prescribing stronger pain-killers (or adjusting doses), 24x7, if necessary.I was back to work, part-time, within just a few days after I got home; full-time, within 3 weeks.There was no pain from "the drilling" itself.  First, that happened under general anesthesia; second, there are no "pain sensors" in the skull itself... only what's in the skin and muscles over the skull.There was a time of about three weeks when I couldn't open my mouth fully (no quarter-pounders... lots of apple sauce and oatmeal!) because, to reach my surgery site, they had to "go through" the muscle that runs, vertically, in front of the ears... the muscle that manipulates the jaw.  That led to muscle pain, but all the pain was over within 3 weeks.Of course, I've never given birth; but, if Bill Cosby's analogy is correct, and the pain of childbirth is like the pain of pulling your lower lip up over your head... well, let's just say, this wasn't that bad!I had several visits from friends while in the hospital... and my wife stayed with me, every night.  (Granted, we have no children.)  I also had my laptop with me; there are photos of me, sitting in the bed with the EEG wires attached, typing and smiling for the camera ;)The hospital staff was also extraordinary; that's one of the reasons I continued going to that epilepsy center, after the first ("no big deal") evaluation stay... I was evaluating them, while they were evaluating me ;)

RE: RE: RE: surgery at 40

Bill:I must commend you on your success on recovery from the surgery.  I went through surgery as well ......... now 15 years ago.  Medically, it went smoothly. It was disruptive from a social and employment perspective.  But I was willing to sacrifice everything for the surgery.I think everyone must evaluate the pros and cons.  It is particullary important to understand the risks involved with the operation.  Talk to as may people as you can that have gone through the process.  I was firmly commited to the surgery because my seizures were uncontrolled despite the meds etc.  Surgery should be the absolute last resort when all else fails.  

Re: RE: RE: surgery at 40

Folks, all this hospital and surgery and pharma martyrdom, I decided I had enough of it. A few months ago I started going to a Homeopathic Doctor (I posted this elsewhere, but feel inclined to do so again...) and am already cutting back from Keppra and eventually won't take any drugs at all. A qualified, experienced homeopath can do wonders finding the right remedy, because the remedies address your whole "constitution" - emotional and mental tendencies, not just the physical outcropping of symptoms. I now feel very sure, from the recent tangible changes I've gone through in reclaiming neurological or nuero-muscular health/strength/balance, that my past anger and depression had a lot to do with BRINGING ON the tumor I had to have removed. Nobody knows how these things interrelate, really, but I have my hunches...

Anyway, I do urge folks to find someone in this medical realm and save yourself (at least possibly) a lot of money on DRUGS. Just check around for the homeopaths in your area but make sure they've had at least some success in helping clients get off their meds. Mine had no prior experience with epilepsy or 'seizure disorder', but was fairly confident she could help. And she has.

As democracy is perfected, the office of president represents,
more and more closely, the inner soul of the people. On some great and
glorious day the plain folks of the land will reach their heart's desire at last
and the White House will be adorned by a downright moron.

- H.L. Mencken

Re: Re: RE: RE: surgery at 40

Fifthworld:
That's what I want to look into also. Please let me know how and what you're doing? Where do you live?
You can email me personally if you'd like: tnorwick@charter.net
Thanks and God Bless!
Terri N.

RE: RE: surgery at 40

Wendy,My name is Diana and I too have complex partial seizures.  I too am having surgery.  Please write to me!! I have many questions 

RE: RE: surgery at 40

Wendy,Please email me!  dfriedman@sbcglobal.net .  I too am getting ready for surgery for complex partial seizrues.  I too have them every 4-8 weeks and no medication has been able to stop them.I think you and I are in the same boat.  Please email me, I would love to hear from you!! Diana

Re: RE: RE: surgery at 40

Hi was wondering how you went with surgery. Did you go through with it?
It strikes me as odd that doctors recommend surgury for seizure activity of a one to two month interval, however you are the one who would best know how it effects you.
Our girl K, 14 yrs ols has had similar epilepsy for 4-5 yrs now. Only in her case she has seizures up to 8 or 10 per day. At this level we are trying to weigh the pros and cons of surgery as it was just recommended today. Drugs have not worked and it does not seem to be any worse without them, we just lose the side effects.
Any way would be interested to hear how things faired for you.
Thanks
Dave

RE: surgery at 40

I had surgery at age 50 ... and it was one of the best decisions I ever made!My seizure history is: A grand mal "out of nowhere" in the middle of the night, at age 35 (well, 34.9); fully controlled by a single medication, except during one 36-hour period, three years later, when I forgot to take it (duh!).  Then, a few months after that, my seizures "morphed" and I began having complex partials.  These, too, were controlled by (an additional) med, for nearly 8 years... at which point complex partials began to occur, again; several other meds were tried, but none was fully successful at controlling them.When surgery was suggested, I resisted ("my brain is my life!")... but I finally agreed that meeting with a specialist, at a first-rate epilepsy center where such surgery might eventually done, was a good idea.With the help of the good folks at braintalk.org ... I figured out what questions I had to ask, to find "the best epilepsy center" (to my satisfaction).  I've always been fond of the "get the best you possibly can" approach... and it paid off!After meeting with the director of the epilepsy center that I chose, I decided that getting *evaluated* for surgery was very low-risk, and would settle the question of whether I was even a candidate for surgery.  I had, by that point, been unable to drive for about 3 years, and was having multiple seizures weekly, with associated injuries.I went through the evaluation, and it was determined that I was, indeed, a good candidate.  A month or so after the evaluation, I had my Final Seizure... thank you, God!   A few weeks later, a last pre-surgery test indicated that there was, nonetheless and indeed, a malfunction in my right temporal lobe... which was clearly doing me more harm than good!  In light of that (very conclusive) result, we proceeded with the surgery a few weeks later, on a Thursday; the following Monday, I was home... and five months later, I took delivery of my new car!Since then, my medication has been progressively reduced. I'd be on just a single med, at this point, other than personal choice because of some of the psychological side-effects that I experience when *changing* the dosage of the second medication; this just wasn't the right time to go through that, again.Surgery is often not considered until well down the road, because people are scared of it.  There are some clinical studies suggesting that patients do better, in terms of their overall life quality, when surgery is considered sooner, rather than spending months or years playing "medication roulette."Here's a news report, from August 2003, on that point... http://www.thebostonchannel.com/health/2392333/detail.html ... and, a subsequent report, which includes a video interview with a patient: http://www.thebostonchannel.com/health/2666883/detail.html .(Neither of the hospitals referenced in those articles, is the one I chose... and, those articles didn't appear until well after my surgery.) 

RE: RE: surgery at 40

Bill,Could you provide a bit more information on what kind of evaluations you had to go through to determine if you were a surgical candidate - and any other related information?  I sought a re-evaluation of my condition and options a year ago and was asked why I even wanted one if my seisures were under control.  I am not at all sure that they are totally under control anymore and have other health and age related issues that weigh in now.Needless to say I am seeking a new neuro and facility.  I won't ask you to make any recommendations but I would like more information.  In this day and age of insurance and HMOs I have great difficulty getting the services I need or want (outside of my personal care physician) covered at all without great difficulty and a lot of letter writing, phone calls and such.  I really would like to know more about this.  Any information you care to share would be gratefully received.  You could post it or send it direct to mccubbin@wctatel.net.  If you reply direct be sure to include Epilepsy in the subject so I don't accidently delete it as "suspicious" mail.Many thanks........................Lee

RE: RE: RE: surgery at 40

Lee, I'm sorry I didn't see this until today. (I've been getting too many "such-and-so-forum has updates" messages, and not keeping up with them all.)My surgery evaluation consisted of:1. Trying several medications, without *enduring* success. (I did go for 8 years, fully controlled, at one time, on medication... it was at that point that we began (what I fondly refer to as) "med roulette".) The usual periodic EEGs (with sometimes-conflicting, never-crystal-clear results) and MRIs (which were always perfectly normal).2. Recommendation by my local epilepsy-specializing neurologist to consider surgery.3. Picking myself up off the floor (that's a metaphor, there was no seizure actually involved)4. His recommendation to get evaluated by the specialists at a major epilepsy center, typically one associated with a research hospital.5. Investigating "how to choose an epilepsy center", since I had no prior experience... this was summer 2001.6. Researching the possibilities on my "short list" (which, for me, included MGH, Columbia, Cleveland Clinic, Thomas Jefferson, and Johns Hopkins). (Jefferson does not appear on most short-lists, but my local neuro had done his residency there... it was actually the first one I "voted off the island" ;) )7. Contacting MGH and Hopkins for initial appointments and consultations. They were my first-choices due to (a) personal knowledge of MGH from my time in Boston, and (b) geography (which matters... this is a long-term relationship). MGH dropped the ball, administratively, several times. I was pleasantly surprised to find that Hopkins is FULLY capable. Also, they're a participating provider in my PPO (another critical factor)8. Met with *my* doctor (OK, so I'm possessive!) ... at Hopkins and scheduled a video-EEG for October 2001. He answered my questions and gave me enough information that I could see that *initial evaluation* was non-threatening... non-invasive, just involved several days in bed on (what amounted to) a tether... nothing at all frightening. (OK, that "non-threatening" conclusion was BEFORE I had my first taste of hospital food ;) )9. Video EEG (VEEG) as scheduled... and, assertive person that I can be, I learned how to get something other than "chicken and zucchini"... and, how to get a roll-away bed that was less than 50 years old, for my wife (who stayed in the room with me). I exercised my advocacy skills, and also found that the staff at the epilepsy monitoring unit was absolutely superb. I had several seizures; the VEEG results were suggestive, but not conclusive. If I recall correctly, this was about a 5-day stay. Data suggested a right temporal focus, with the possibility of a second focus in the left frontal lobe. Got to watch a video of one of my own complex-partial seizures, which was fascinating.!10. Second round of VEEG, this time "invasive"... meaning, there was surgery to insert sensors... strips, about the size of your pinky, and very thin... inside the skull, floating above the brain. These are called "subdural electrodes". To insert these, they made incisions in the skin and bored four holes through my skull. (The use of strips was based on the location data from the first VEEG; some people need "grids", which are more two-dimensional... like a playing card... and which require cutting out a larger chunk of the skull, like the lid of a halloween pumpkin.) This was early February 2002. Surgery Thursday; left the hospital the following Wednesday, with a whopper headache, and my doctor's pager number.11. Neurology department conference -- conducted for (as I understand it) all surgery candidates -- at which all doctors at the epilepsy center review the case and the data, and make a recommendation. In the meantime, my doctor and I had discussed the VEEG data, which confirmed the right-temporal focus, and demonstrated that the left-frontal activity always *followed* the right-temporal... although very quickly. The decision was, "one lobe or both"... and my doctor, myself, and the conference team all came to the same independent conclusion: right-temporal first... if there's need to do any surgery on the left-frontal, we'll deal with that later.12. No seizures until mid-March... and that one was my last.13. Wada test in early April 2002... clearly showing that my right temporal lobe was counter-productive. With my left lobe "asleep", I did no better than random-guessing on the cognitive tests, and showed some left-side thrashing. With the right side "asleep", I was perfectly fine... that means the left side could, indeed, "take charge", and would probably be happier without the right side counter-manding it at every turn ;) This was described as a "textbook" Wada testSurgery in early May 2002, in on a Thursday, out Monday. I was surprised that the in-hospital turnaround time was that short... at a good facility, "brain surgery" isn't rocket science ;) Again, lots of headache pain. Back at work from home, part-time, on Tuesday; part-time at the office, the following week; full-time, by late May.I've been back for 6-month reviews, and an annual (scalp) EEG, at the epilepsy center since then. Keppra has been tapered back to bare-minimum dosage. So far, everything looks good... of course, epilepsy is one of those few conditions that can't be *conclusively* said to be "healed" until, well, death.But, I BELIEVE... which worked for the Red Sox! :)

RE: RE: RE: RE: surgery at 40

THANK YOU BILL...............Tell me more about item #5.  Where did you find the information?  I am in the midwest so don't have the same facilities available that you do - but there are some good prospects.  I just need to know what to look for, what to question, what questions to ask, etc.As I told you in my earlier post my seizures have been controlled for over 30 years with the same meds - but there have been new manifestations occuring.  I had not seen a specialist since the late 70's and my primary care doctor handled my perscriptions (as per neuro's recommendation).  I have had no problems until recently - and these are more like auras.  I need to be re-evaluated but the facility were the original diagnosis and treatment took place was the one that wondered why I was there seeking re-evaluation last year...........I definately need a new one!My PCP thinks I may be a candidate for surgery since the diagnosed cause of my seizures was due to a head injury that left a leision on my RTL.  But we both want to get me refered to a facility where I receive the best treatment and be offered the most options.  Many thanks again for your responce!  Don't stay away so long next time!!!Later.............................Lee

RE: RE: RE: RE: RE: surgery at 40

Hi Lee, I'm baaaaack ;)The #5 that you asked about was, "how to choose an epilepsy center."I remember posting a message, with that title (closely paraphrased), on braintalk.org, asking for suggestions on what to consider. I got individual feedback from some of the folks there, based on their own experiences... not unlike the conversation we're having right now. I "spoke" with people who'd had surgery successfully, and some who hadn't... and learned what the procedure would be like. My list of questions for the doctors essentially was based on what I learned from other patients... "Can you confirm such-and-so", or "I heard x, is that right?"Ultimately, the facility selection had to be my choice... and, one that I'd be content to live with, long-term.One of my early realizations is that, for me, "my brain is my life." I'm one of the academically-gifted, "high-function" (in neurologist-speak) people; put me on a football field and I'll simply stand there and get knocked down, but give me a mental puzzle to solve and I'm in my element. "I think, therefore I am".Since this is, after all, my brain that they were going to (potentially) operate on... I decided I wanted "the best care I could get", for the same reason I get "the best-quality car I can get" and "the best-quality winter coat". Of course, "best" is, inherently, subjective... "best" to me may be "worst" to someone else... and, "best I can afford" fits in there, too, which leads to "best one that my health plan will cover."Based on my earlier medical experience, when I was living in the Boston area with several excellent teaching hospitals and Harvard Medical School nearby, I was predisposed to look to a teaching hospital; on average, they attract and develop... and, on average, they retain... the most up-to-date knowledge and technology. Most of the major epilepsy centers in the US... at least, most of the best-known ones... are associated with teaching hospitals. Next, I wanted to be sure the epileptologist who was in charge of my case was a real expert... both in doing the "pre-surgery evaluation" job, and in doing the "patient care" job. The other factor was... I learned that it is reasonably important (although perhaps not essential) to be evaluated at the same facility that's going to do the surgery. They know how to read and interpret their own staff's findings, summaries, and equipment idiosyncracies.I discussed my "short list" with my local neurologist (who was the one member of the practice with an epilepsy specialty); he gave me a few names to call. I also did some research on the Web... by going to the hospitals' Web sites and noticing the kind of research work they were doing, the background of their personnel, and the general "aura" (no pun intended!) that they emitted... kind of a "sniff test".Then I sent an email off to (the gentleman who would become) my doctor at Johns Hopkins (since email addresses for many of their staff are visible on their public web site); I could tell from the *way* he responded, that he and I would "get along". Now, that's not THE most important thing... but it counted for something... at least enough to get me to go there for an initial consultation. He also had a very impressive resume' ... and, I later learned, a family member with epilepsy, and therefore some personal motivation. During the initial consultation, while he was evaluating me, I was evaluating him. He passed the "bedside manner" test very easily. I walked away with confidence that this was, at the very least, a good place to get the evaluation done, and quite possibly a good place for surgery (if that was ever going to happen -- I carefully "reserved judgment" on the surgery until after the evaluation... it's much better to take this whole process step-by-step, 'cuz it's too easy to be overwhelmed).It was really only during the first round of VEEG monitoring that I became *fully* convinced I was in "the right place". The attentiveness of the EMU staff, and the way they dealt with the little "hiccups" that accompany most anything complicated, really made an impression.I didn't meet the surgeon until later. I came to view the neurosurgeon as the "mechanic" who works on my car; I want him to be technically superior, but I don't care all that much about his bedside manner (as long as he's truthful). The epileptologist, on the other hand, is like your car dealer's "service advisor"... the guy you describe all the symptoms to, including funny noises and smells ;)That turned out to be quite accurate; the neurosurgeon didn't have high "people skills". But that's OK, he knew what he was doing, and did it very well! I didn't need him to be my friend...I'm pleased to say that my epileptologist and I are now on a first-name basis. He *could* be a friend (and, occasionally as a result of things that happened during treatment, *acted like* one... but I digress).Does that help? (Please excuse my rambling!)In the Midwest... I've heard good things about MINCEP (in Minnesota), the Cleveland Clinic, and the Mayo clinic. There's also *some* value in things like the US News & World Report annual ranking of hospitals, which includes a neurology ranking... but, it ain't the Gospel; they don't report, in the 2004 issue, that Hopkins even *has* an epilepsy center, for some reason.

Re: RE: RE: RE: surgery at 40

Hi! Wanted to let you know I read your entry and was very ? relaxed after? Anyway it is very informative and I'm glad to hear you had good results. I'm going through the process of being assesed for surgery and so for my veeg has shown that my seizures are coming from my right now aswell as my left. It was pretty interesting watching myself having a seizure aswell.Next I am having what my doc. calls a different type of mri any of the other ones i've had have always been fine.Any idea what a different mri might be? Thanx for what you wrote it helped once again to know that someone else has had a good out come. Smiles to you!

RE: RE: RE: surgery at 40

Bill,Thank you very much for an in depth view of surgery.  I am on the brink of surgery ~ it should take place in 4-6 weeks.  I have done the VEEG, and had approx 20 seizures over a 48 hour period.  I still have the WADA test to do.  I have enjoyed reading about your experience, and am very happy for your success.  I am most excited about the surgery, but also nervous.  I say excited because I look forward to not being *tired* and hopefully will be able to keep up with my kids!!  :)Thanks again for sharing!Diane M.

Re: Diane, you're welcome!

Hi Bill,

Are you from Boston, I saw the red sox reference. I'm from here and was wondering where you had your surgery done. I actually had it at Umass memorial in worcester and do not regret it at all. I had a right temporal lobectomy 5 years ago and have been siezure free since. I have gone from 4 tegretol pills to 2 and will probably go down one more this summer.

How is everything else after surgery. How is your memory, I feel loike that is my only side effect. Though I never had a good mrmory anyways, I think my short term memory got a little worse but it is a small price to pay for such a life changing event!

RE: surgery at 40

I started out with problems as an infant, by the age of 3 i had spinal meningitis and hydro-encephalytis. I was in the hospital a total of 18 months during which time they tapped the fluid out from the brain repeatedly and then in 1957 put in a shunt. This came out of the side of my head for months and was prior to the shunts which now drain out through the digestive system. It was there until the swelling from fluid went down. Because of the repeated entries there was a good deal of scar tissue built up going into the many folds in the brain surface and they ended up going in in 1958 and removed what they told my mom was 9.5% of the brain. This was removal from the right side. They told my folks prior to the surgery that i had 10% chance of surviving.Well, i guess i beat those odds. I lived a fairly normal life until 1980 ( age 25 ). I had a grand mal seizure while taking the written test to renew my license to drive heavy trucks. I had to be able to drive basically anything as a federal park ranger. Once that happened and i started to learn about seizures i realized i had had petit mal and partial complex at least as far back as my early teens. ( I have little memory of anything before that. )I have taken many different meds to control seizures, but with poor effectiveness, although i did go one time for 6 months without a known seizure. About December of 2002 i started having one seizure after another. In the first six months of 2003 i recorded over 650 seizures. while in the hospital for pretests for surgery they recorded 67 seizures in 3 days. July 15 of that year they did a left temporal lobectomy. I still have seizures almost every day however.  The headaches however, are not as bad. Doctors are recommending VNS surgery.

RE: surgery at 40

There are other drugs out there that dont metabolize in the liver. If you try the more recent drugs they are less side effects and some metabolize differently.I have had surgery six times and still not seizure free. Just had some seizure taken away. there are many alternative ways also. Check out andrew and reiter.My support group deals with surgeries, diets, neurofeedback,vitamins....http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: surgery at 40

Dear Fairylover63,          STAY AWAY FROM BRAIN SURGERY!!!  DEAD SERIOUS. when the doc says "scar tissue", he means "brain tissue", ie-"psychosurgical lobectomy"  such as Dr. Harold J. Hoffman pulls off with his epileptic children at the Toronto Hospital for Sick Children.  When healthy good brain tissue is resected from a human subject, this causes further scar tissue, which results in greater epileptic convulsive disorder, cerebral hemmorahaging, and status epileticus.  As one of Dr. Hoffman's guinea-pigs Dec. 9,1969, and Jan. 27,1972, (at 14 & 16 years of age)I have experienced a dramatic increase and variation in seizure disorder, on-goingepisodes of cerebral hemmorrahaging in the operative field, and episodes of status epilepticus.   It's a bitch they're pulling off this psychosurgical rape with epileptic children, and not allowing the parents any choice in this operation.Mind you, that is not to say we have a cure for epilepsy. Since these experiments, I have fought for over 25 years to have marijuana legalized for medical necessity.   Since Judge Patrick Sheppard's decision Dec. 10,1997, striking down our marijuana laws as unconstitutional, I have only suffered one seizure. Thsi is quite significant, when compared to 5-80 attacks a day prior to Sherppard's decision.     Sheppard's decison was appealed in 1999, and on July 31, 2000, the Ontario Court of Appeal declared our marijuana laws unconstitutional, allowing me to consume marijuana for blocking seizure disorder.Presently, the Liberal government is pulling off another scandel, when prosecuting marijuana consumers, upon a law that has been declared unconstituional.   The crown is exersizing misrepresentation by trying to use the Hitzig case, in order to re-resurrect prohibition of marijuana.  Thing is,only parliment can enact criminal code statue, not the courts. We have dismissal applications at www.cyberclass.net/turmel/timeline.htmwhich those arrested, can print off the forms, fill in the blanks,and request that the charges be dismissed upon Parker and Krieger.  The crown, not willing to admit that our marijuana laws are unconstitutional, will likely request, that the charges be dismissed.  As done with cases inn Toronto, and southern Ontario.Every year in Canada, 2400-4600 people die, as a result of status epilepticus. The number one adverse effect of temporal lobectomy.    Prohibition of marijuana has cost thousands of lives. Lives that could be saved if not for the criminal conduct of our medical profession, and thier discrimination against those with epilepsy and marijuana.Presently, I am a  Marijuana Party Candidate  for Parkdale / Highpark, Toronto, Ontario, and encouraging my constituents to vote for marijuana, rather than a party which neglects  the criminal assault by our medical profession.A joint in front of me, is better than a unauthorized lobotomy.Yours,          Terry Parker Jr.          Psychosurgical rape victim          www.geocities.com/terryparkerjr          www.cyberclass.net/turmel/timeline.htm           terryparkerjr@sympatico.ca 

Hi Terry, The medical

Hi Terry,

The medical knowlege, understanding and tests for epilepsy in those days (1969 & 1972) DO NOT COMPARE with what exists today, so your situation has no basis impacting today's decision on surgery.
In the past 10-15 years, huge strides have been made in neurology, so people have no need to fear what you went through.

Also Canadian, I was at the Monteal Neurological Institute in both 1974 & in 1978 to undergo testing re possible surgery (so I know precisely what tests existed at that time).
I didn't qualify for surgery, which is just as well as never having been controlled I had no idea what I was missing, so I would never have taken the risk anyway.

After being (finally) controlled for over 10 years, which I lost.. I then began testing for surgery which I had last January.
So I am (directly) aware of the MANY neurological pre-surgery tests that exist today, which didn't exist during the 1960's and 1970's.

Ergo, your whining "surgery isn't safe" may have been true at one time, but it does not take into account that a lot more knowldge exists today.

Moreover, your statement that a temporal lobectomy causes status epilepticus is garbage.
It was NOT among the risks that either my epileptologist or my neurosurgeon told me about re: the surgery.
Nor is it listed on epilepsy.com as a risk.
If you disagree with my opinion, prove your statement.

~sol

RE: surgery at 40

Congradulations. There are other drugs out there that dont metabolize in the liver. They are usually the new ones.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: surgery at 40

Hi. Surgery is usually only considered as a last resort in the case that AEDs won't work. At the age of 43 after trying numerous combinations of AEDs I got the vns. It has been turned off. All AEDs have some sort of side effect. I don't think there is a pharmacutical drug out there that is good or beneficial for the liver or any other body organ. This is most unfortunate but true. If you must take chemcal perscription drugs then consider a natural way to periodically cleanse the toxins from your system. You can find all kinds of natural detox agents at your local health or nutrition store. All the best to you. Blessings. Linda.

RE: RE: surgery at 40

true, there are no drugs that good no matter where they metabolize. But we have to take them. I do take milk thistle for detoxifying. But you should always check with your doctor before trying anything new. Lisahttp://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: RE: surgery at 40

Lisa. Hello again! I disagree that "I have to take them." I choose not to take pharmacutical drugs. I am sure my neuro would say that by trying some more of them I might feel better? (I am not his favorite patient.) I haven't had a good experience with being prescribed pharmicutical drugs. This has only been my experience. There are some people that benefit from taking prescription drugs and others not. My mom too is sensitive to the pharmacuticals. She has a bad reaction to just about all of them. She has high blood pressure and a hard time of it. (The doctors get fed up with her because she has a reaction to everything they prescribe.) She too is now persuing natural homeopathy to treat the high blood pressure. Going the natural route one has to have the means to finance the supplmental regiment that is needed and the time. Technically speaking one can't eliminate going "all natural" until being at full regiment on supplements for a year. I am blessed to be able to afford to do this and have had the time off to try the natural method of treatment. It is expensive. No doubt. But I have found that in the long run it is actually less expensive than paying physicians, drug manufactures, insurance companies, lab bills, and hospitals. (I average paying a little over $250.00 a month on supplements.) I have been much healthier (and deffinately of a better tempermant) since eliminating perscription drugs. It has been a long hard road and not easy. Once again this is not to stand as a general concensus but has only been my personal experience. It is of great importance to benefit from the aide of a skilled physician or surgeon and prescribed drugs if needed. Lives are sometimes saved due to skilled medical intervention. Some people live by the drugs they take. And this for them is a good thing. I don't want anyone to get the wrong idea here. If you have found a drug and medical professionsals that work for you and are happy then this is all that matters. I hope that I don't get cruxified here for stating my oppinion. Peace to all of you who read this thread. Have a nice weekend. Blessings. Linda.

RE: RE: RE: RE: surgery at 40

Linda, I agree with you on no meds at all. But I would not ever tell anyone not to take them for it is just safer that way. I take many supplements too... But I want my doc to cut me back on my meds. I hope one day that I wont need them. So you are saying you take not meds for epilepsy at all? How are your seizures and were you ever on them in the past? I am working to cut back in the near future a great deal. best of luck to youLisahttp://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: RE: RE: RE: surgery at 40

Lisa. Hi. I hope my brain will work to get this out. I am going to have to scrap today (seizure,) and go back to bed. No. I too would not tell or advise anyone to stop taking their AEDs without first consulting a neuro. In the past I have been on many different AEDs, sometimes three at a time. I also have the vns. It was turned off in Oct. of 04. Depending on what happens with seizure between now and the end of June will determine if I have it turned back on. Plus I am going through menopause which has made my brain have more seizure. It has been almost a year since I had any AEDs. I had the vns on for about a year and a half. It is hard to say if the seizure that I do have is a result of turning it off? But I have a hard time when I consider going back to see a neuro who says my symptoms are in my head. Excuse me but no... dah!!! I have abnormal eegs (looks like status epilepticus,) with blurred vision, a tingling tongue (sort of numb,) and a sensation like I am falling, all at the same time, and have been diagnosed with TLE, partial complex seizure. As a child I had the starring spells and whooper night seizure. And now because I do everything but convulse: Prior to the vns I had full blown clonic-tonic seizure. The doctors are dumbfounded at a loss of what to do to help? If I do decide to go see a physician it will be a specialist at Mayo Clinic. The last neuro I saw lacked in professional knowledge and didn't respect me as his equal (major mistake.) If I knew of a nuero who was trustworthy and knowledgable then I might consider a profession medical oppinon. But when you have lived through what I have it seems best to observe those in the medical field from a far distance. LOL. Anyone else having these symptoms but not experiencing seizure to peak convulsion? I would like to know if anyone else has this same problem? Anyone have the vns on for any length of time, then have it turned off, not take any AEDs, and are experiencing seizure but not to convulsion? As a person with a pee-on medical degree (med asssit) I personally would find my case a challenge. I have yet to find a neuro with my same sentiments. Honestly I don't think I am ready to put my trust into a medical professional again. Treating E with natural supplements and therapies, I seem to be doing alright. At least I don't have the worry of someone making a wrong diagnosis!!! Sorry this is so winded Lisa. Did I answer all of your questions? A good Monday to ya and everybody else out there. Blessings. Linda.

RE: RE: RE: RE: RE: RE: surgery at 40

Linda, Yes you answered my question. Good for you. I am decreasing some of my meds right now. My doctor feels I am doing very well and dont really need so many meds. I will be pushing her further, but she doesnt know it yet. In the past 36 years with epilepsy, this is the first my doctor has said I dont need the meds much anymore. But of course it is the changes I have made in my life.Lisahttp://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: RE: RE: RE: RE: RE: surgery at 40

Lisa. Hi. I a glad you found a docor who actually is willing to decrease your meds. Who is she? it sounds like you really like her. That's good Lisa. How many AEDs are you on now? Do you have the vns? Blessngs. Linda.

RE: RE: RE: RE: RE: RE: RE: surgery at 40

Hi Lisa. I am glad you found a doctor who is willing to decrease your meds. From my experience this is not the norm for docs to decrease meds. How many AEDs are you on? Do you have the vns? You say that the sezure is less because of your life style. What kind of changes did you make that helped? Blessings. Linda.

RE: RE: RE: RE: RE: RE: RE: RE: surgery at 40

linda, Yes I have been with my doctor for 15 years now. I can say and anything to her. I really do like her. I am down to one med now. Yes I am on the VNS but it is turned off for I got sleep apnea from it. I can turn it on when need.I just change my diet, vitamins. coconut oil things like that.Lisahttp://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: RE: RE: RE: RE: RE: RE: RE: surgery at 40

Lisa. Hi. Wow. You have been with your neuro for 15 years. I am truely glad that you have found someone worthy to to help you. What one AED do you take? My vns is turned off too. What does the cocunut oil do for you? Blessings. Linda.

RE: RE: RE: RE: RE: RE: RE: RE: RE: RE: surgery at 40

Linda,  I just take trileptal. The coconut oil is a good fat we need fats for the brain.Lisa

Hi, I wa 35, 37 and 38 when

Hi, I wa 35, 37 and 38 when I had Multiple Subpeil Transection. I am sorry if I dont get back to you, I am having a hard time with this site, Still learning.

I had six surgeries and it took away 15 a month. I do have a support group you might want to check out first for more info
Lisa
http://health.groups.yahoo.com/group/EpilepsyApproach/

Hi fairylove, I will give

Hi fairylove,

I will give you pages to confirm my statement, but the bottom line is only a small % of those with uncontrolled E qualify for surgery testing, and a smaller % of them qualify for surgery.

Surgery is only effective for epilepsy that located on one just side of the brain (ie..'partial' as opposed to 'generalized' seizures).
Grand Mal (now called Tonic Clonic) is a generalized seizure so surgery isn't an option.
http://www.epilepsy.com/epilepsy/surgery.html

Typically, you were able to get on medication that controlled your seizures (far more common with generalized seizure types than with partials).
Given that you are controlled, and can be checked constantly for liver damage, the risk of surgery would make no sense anyway.

Here is a site on the various AEDs, so you can search out one that will not metabolize the liver.
http://www.epilepsy.com/epilepsy/seizure_medicines.html

~sol

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