Re: Surgery for Epilepsy??

[Guest guest]

Yes she did follow the medical version at Huntington Memorial Hospital, Brain

Mapping and Epilepsy Center in Pasadena, CA

In a message dated 2/19/2003 12:27:46 PM Pacific Standard Time,

lingood@... writes:

> Did your daughter follow the medical version of the ketogenic diet?

>

>

>

> > From: moorewise@...

> > I have spent many years and thousands of dollars on

> > every therapy I can get my hands on for my daughter. She is not a

> surgical

> > candidate so I will continue to try and find the cause of her absence

> > seizures. We tried the diet for 2 1/2 years but it helped but never

> > completely stopped her seizures. She became food obsessed and depressed

> and

> > could not concentrate on school, she could only focus on the next time

> she

> > could eat. Parents suffer so much when they can't find relief for their

> > child.

[Guest guest]

There are many different types of brain surgery so it depends on what type.

I am most familiar with Temporal Lobe Epilepsy and studies regarding TLE.

Studies can only be done in control groups that is why you are only finding

stats on one particular form of surgury. It would be inacurated to state

stats from TLE and Frontal lobe epilepsies as their surgery success rates are

different. There is frontal lobe, cortical dysplacia, corpus colosotomy,

hemisphereectomies, etc.., My greatest question is what if surgery was a

first line defense instead of a last line option where the brain has

habituated to seizures, drugs introduces, side effects of medication, and

cell death. There have been no studies (that I know of, I have inquired)

where surgery was used after a 1st or 2nd med has failed. TLE has a success

rate of 95% depending on where the lesion is. That is a very good risk I

would say. I think this is where the future of epilepsy is going, I could be

wrong but any epileptologist will tell you if the first med fails, and then

the second, you are in the hard to control group which means struggling daily

for seizure control.

There are more questions than answers when it comes to epilepsy,

unfortunately.

Look up Dr. Selim Benbadis and look up his surgery program stats.

Good luck,

Janna

In a message dated 2/19/2003 1:09:36 PM Pacific Standard Time,

lingood@... writes:

>

>

>

> Janna,

>

> I've read many brain surgery studies posted on Epilepsia, but I've not

> found

> any complete statistics, only those for individual studies, and again,

> they're very convoluted and incomplete. I can't access PubMed, but I'll try

> the American Epilepsy Society website - thanks.

>

> I assume since you asked me to share what I learn that you also have not

> found any complete stats on brain surgery?

>

>

[Guest guest]

Katharina:

My understanding is that your brain does not always have electrical activity

in all parts of it. So the lesion would not always have electrical activity

and therefore would not always seize.

Now...as for brain surgery vs other treatments for epilepsy....The reason I

joined this group was to explore ALL possibilities for treatment of my son's

epilepsy. I want to hear it all. Not all treatments work for all cases.

Each person has seizures for their own reason and I want to understand those

reasons in my son's case.

I've heard about various tests that we could do to help determine causes.

I've learned of various treatment options that we could try. I'm glad to

have heard all this and I don't want any of it to stop. Each person will

have their own success story and their own horror stories. That's fine.

Anyway, with any of these treatments, investigation is important. If

considering surgery a person must get as much information as they can and

make the decision that feels right for them. From what I've been able to

learn about surgery, the doctors are much more careful now about who they

offer surgery to, they do a lot more investigation to make sure they're

going to cause as little damage as possible, and they leave the decision up

to you. So if you feel the risks are not worth it, then don't go for it,

but if you think it's worth it, then go for it. It's a personal decision.

When I first joined this group I thought people who opted for surgery were

crazy. However, my eyes have been opened (with education) and now I know

that for some people that is their best option. Let's try to keep this in

mind as we all learn.

>From: TVA12082208@...

>Date: Tue, 18 Feb 2003 17:26:44 EST

>

>In einer eMail vom 18.02.03 20:27:52 (MEZ) Mitteleuropäische Zeit schreibt

>moorewise@...:

>

>

> > The cause is usually a lesion- injured part of the brain

> > which will not heal itself.

>

>Janna,

>if an individual has a lesion, and if the lesion were the cause, the

>individual would be supposed to have seizure non-stop, because the lesion

>is

>there non-stop.

>This is not the case.

>It is not logic what you are saying.

>Katharina

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

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[Guest guest]

> From: Topmom7698@...

> the hemispehre patients are the most dramatic improvement in

> seizure improvement

,

I think individual stories can be very misleading. Many people base their

surgery decisions on individual stories (as well as assurances from the

doctor), which can be very persuasive, especially when it's a real person

telling you, not just a story you read about. Maybe that's why neurosurgeons

and even the EFA enlist the help of successful surgery patients in promoting

surgery as an option. They sure don't ask unsuccessful surgery patients to

promote their experiences. So based on this unbalanced representation, only

complete statistics can give us the true picture - this is the primary point

I'm trying to make.

I know a child who had a hemispherectomy two years ago at age 14, the son of

a cyber friend of mine, and his outcome is opposite to the two you

mentioned. He has TLE and puberty lowered his seizure threshhold (though

still manageable, through the keto diet primarily) His nightmare began

shortly after his mom brought him for his first HBOT, which triggered more

seizures (a healing reaction they should have rode out - HBOT is the closest

we can get to brain healing at this point) but she didn't know it was to be

expected and she panicked, thinking the HBOT had hurt him, and she took him

immediately to the Cleveland Clinic in Illinois. (i found all this out AFTER

it was too late) She's fairly enlightened, but in her distress and

misinformed fear she fell back on her longtime - often misplaced - trust in

neuros. Well, they tested and announced that he had 'Rasmussens

Syndrome', a 'rare', progressive form of epilepsy, and the only relief he

could hope for was a hemispherectomy (strange that they hadn't seen this in

all the years before) Within two weeks they had her convinced and she let

them do the surgery. Before the surgery, had seizures periodically,

but was a fully functioning teenager, aside from some cognitive challenges.

He was mostly weaned from AEDs and his mother's goal was to have him drug

free (he was on the ketogenic diet). After the surgery he couldn't walk or

even wipe his own behind without help, went through many months of grueling

'rehabilitation', is on MORE AEDS, whenever he's standing he feels like he's

going to fall over because his equilibrium is shot and according to the

doctors always will be (they neglected to mention that 'little' risk to his

parents before the surgery), he STILL has problems with movement, and most

infuriating and heartbreaking of all, his seizures returned within 6 months

of the surgery! He's told his mother that he didn't mind the seizures before

the surgery, but he does mind not being able to do all the things he used to

do before the surgery handicapped him further. He also has significant

memory loss - he can't even recall the trip to Disneyland they took 3 years

ago, for instance (so sad - he won the trip in a contest and had the time of

his life) These are the heartbreaking stories you DON'T hear about from the

'experts'. How many more are there? Who knows? Nobody seems to be keeping

track.

Something else - in the same weeks that prepared for and had his

surgery at the Cleveland Clinic, there were an average of 2 hemispheretomies

performed there every week on 'Rasmussens Syndrome' patients. (you can check

this information for yourself). If Rasmussens Syndrome is rare, how could

they get these outrageously high numbers and so quickly? It looks more to me

like they had an experimental research objective involving

hemispherectomies, so they got themselves a bunch of willing, vulnerable

subjects to fall for their phony diagnosis and 'solution'. All it would take

is a 'consensus' about certain 'symptoms' being indicative of Rasmussens to

push such an agenda. I think simple common sense points to something very

amiss at the Cleveland Clinic, which is highly regarded nationwide. It's

very big on brain research, dontcha know.

Anyway, that's my personal experience of hemispherectomies. If you're

interested in including 's story in your book, I can put you in touch

with his mom.

[Guest guest]

> From: moorewise@...

> I would call three months of being seizure free and feeling over all, much

> better as this person was seizing several times per week. The other adults I

> know have been seizure free for years and two of them are off all their meds.

> I hope this clarifies the big picture. For those of you who don't want

> surgery, don't have it, but don't discourage others from seeking help.

Janna,

Respectfully, personal experience does not in any way clarify the big

picture. The big picture is an overall view of the outcomes of all the

various brain surgeries performed, and the only method is through complete

statistics. Do you know where we can find them?

[Guest guest]

Janna,

I just want to clarify - short seizures do not cause brain damage. I don't

think anyone is arguing with the fact that prolonged seizures (20+ min) can

cause brain damage, primarily from lack of oxygen.

You wrote: >>Why are we arguing about brain damage when we know seizures can

cause death? Research SUDDEN if you want the latest information on the

mortality and morbidity of epilepsy>> I assume you meant SUDEP? The latest

studies on SUDEP that proclaim seizures as the cause of death (and implying

that ALL seizures may ultimately result in death) neglect to factor in the

only other thing all the victims had in common - massive doses of AEDs,

which weaken the heart and poison the blood and organs and can lead to

death, explained or not. It strikes me as stupid at best that these

'experts' can't (or won't) see the obvious.

So what else is new?

> From: moorewise@...

> Reply-

> Date: Wed, 19 Feb 2003 14:01:41 EST

>

> Subject: Re: [ ] Surgery for Epilepsy??

>

> Last year I had the privilege to hear the President of the AES (American

> Epilepsy Society) speak and not only did he lecture on this depressing topic

> but he also showed a slide show presentation on cell damage with before and

> after photos using sophisticated specialty MRI scans. I only repeat

> information from sources that I would consider leading experts on epilepsy

> specifically from around the world.

>

> The America Epilepsy Society is an association of Medical Professionals in

> the field of epilepsy (Neurologists, Epilepstologists, neuro scientists,

> etc.) Even the Epilepsy Foundations across America will tell you a 20 minute

> seizure can cause damage to the brain. Please note, the word can, every

> individual brain is different and will react differently to a seizure. Some

> brains can endure 20 minute seizures weekly and be fine, other's can't. We

> can only speak for our own personal experiences. I have seen children

> mentally deteriorate due to uncontrolled prolonged seizures over a long

> period of time, 1-3 years.

>

> I have also heard Cora Lee speak from the Institute of Human Potential

> and I have read their material. They have success with CHILDREN due to brain

> plasticity and children can relearn things using different parts of their

> brain. This program is very expensive, in Philadelphia and it can take 8-12

> hours a day of exercises. Most people can't afford this nor can they commit

> the time. If you can great if not, keep searching for other options.

>

> Please keep in mind that the Institute of Human Potential is only for

> Children, not adults and is not considered an Epilepsy Center which just

> focuses on Epilepsy. They treat many brain conditions.

>

> I agree, all of your questions are valid, but the current information,

> today's information, says seizures can damage the brain. Why are we arguing

> about brain damage when we know seizures can cause death? Research SUDDEN if

> you want the latest information on the mortality and morbidity of epilepsy.

>

> Janna More

>

>

>

>

>

> In a message dated 2/18/2003 5:22:06 PM Pacific Standard Time,

> mcpitza@... writes:

>

>

>>

>> murexes wrote <we know that

>> uncontrolled seizures damage brain tissue>

>>

>> Where did this information come from? The only seizure activity that I am

>> aware of that could cause damage would be status epileptics

>>

>> Here is a quote from the Institute for the Achievement of Human Potential:

>> <Laboratory studies do not support the belief that seizures in themselves

>> add to existing brain injury. For example, it is obviously impossible to

>> examine human brain tissue immediately following a seizure. Even if such a

>> procedure were feasible and fresh tissue injury were found in such an

>> examination, it would still be impossible to determine whether the injury

>> caused the seizure or the seizure caused the injury. Where people die in

>> situations which are often associated with seizures, such as strokes,

>> trauma, acute lack of oxygen or poisoning, it is not reasonable to conclude

>> that the seizure causes brain injury; it is rather that brain injury causes

>> the seizure.>

>>

>> If you have information other than heresy from Neurologists it would be

>> great if you would share that with us all. Thanks.

>>

>> M.

>

>

>

>

[Guest guest]

Janna,

I've read many brain surgery studies posted on Epilepsia, but I've not found

any complete statistics, only those for individual studies, and again,

they're very convoluted and incomplete. I can't access PubMed, but I'll try

the American Epilepsy Society website - thanks.

I assume since you asked me to share what I learn that you also have not

found any complete stats on brain surgery?

> From: moorewise@...

> Reply-

> Date: Wed, 19 Feb 2003 14:47:20 EST

>

> Subject: Re: [ ] Surgery for Epilepsy??

>

> If you can access PubMed, Epilepsia or AES (American Epilepsy Society)web

> sites, I would start there. You can look at overall statistics.

>

> Good Luck,

>

> Please share what you learn.

>

> Janna

>

>

>

> In a message dated 2/19/2003 11:24:19 AM Pacific Standard Time,

> lingood@... writes:

>

>

>> .

>>

>> Janna,

>>

>> Respectfully, personal experience does not in any way clarify the big

>> picture. The big picture is an overall view of the outcomes of all the

>> various brain surgeries performed, and the only method is through complete

>> statistics. Do you know where we can find them?

>

>

>

>

[Guest guest]

Janna,

Did your daughter follow the medical version of the ketogenic diet?

> From: moorewise@...

> I have spent many years and thousands of dollars on

> every therapy I can get my hands on for my daughter. She is not a surgical

> candidate so I will continue to try and find the cause of her absence

> seizures. We tried the diet for 2 1/2 years but it helped but never

> completely stopped her seizures. She became food obsessed and depressed and

> could not concentrate on school, she could only focus on the next time she

> could eat. Parents suffer so much when they can't find relief for their

> child.

[Guest guest]

> From: moorewise@...

> My greatest question is what if surgery was a

> first line defense instead of a last line option where the brain has

> habituated to seizures, drugs introduces, side effects of medication, and

> cell death. There have been no studies (that I know of, I have inquired)

> where surgery was used after a 1st or 2nd med has failed.

Wow. Why are you on this list? You've been advocating brain surgery since

you started posting last month.

> TLE has a success

> rate of 95% depending on where the lesion is. That is a very good risk I

> would say.

Is that statistic based on 6 months seizure free? 2 years? 5 years? How much

lost memory or movement, cognitive decline, migraines, depression, returning

seizures after time passes, etc? How many are excluded from the stat because

they died or had some other 'disqualifying event', which is apparently

standard practice? And a 'success' may only be a success in comparison to

being drugged silly and toxsick and still seizing. Everything is relative.

AEDs are the first crime and surgery is the last, imo.

> Look up Dr. Selim Benbadis and look up his surgery program stats.

I researched Selim Benbadis as you suggested. I discovered that he

contributed to an article promoting a slew of new AEDs:

http://archfami.ama-assn.org/issues/current/ffull/fdt0007.html ;

then he wrote an article promoting surgery when two drugs fail, which

completely contradicted his drug article:

http://home.ease.lsoft.com/scripts/wa.exe?SHOWTPL=EPILEPSY_SURGERY & L=EPILEPS

Y-L ;

he was quoted in a news article supporting medicaid payments for the Vagus

nerve stimulator:

http://www.sptimes.com/News/071100/State/State_won_t_cover_sei.shtml ;

and he wrote an article with the wiley Dr. Wyllie of the aforementioned

infamous Cleveland Clinic on how to label subclinical seizures as

psychosomatic in children, then refer them to psychiatrists, social

services, antidepressants and apparently a lifetime of misery:

http://216.239.53.100/search?q=cache:tWRDq5uRTS4C:www.insp.mx/biblio/alerta/

al0299/14.pdf++%22Selim+Benbadis%22 & hl=en & ie=UTF-8

He's a jack of all research, apparently, and a very busy man. And what a

knack for attracting customers - I read the puff piece about his

piece-o-cake brain surgery: http://hsc.usf.edu/~sbenbadi/usfmag.html

Puff pieces are a great way to drum up business, you have to admit.

Unfortunately, I didn't discover any helpful statistics in my lengthy

search, just more of the usual.

[Guest guest]

,

I have attempted to get research data and I don't think it means much. The

factors that play into successful surgery are two things. location or origin

of seizures (where are they coming from and is there a focus) . Our son had

mesial temporal sclerosis. that is a formal name for scarring of the

ammygdala and hippocampus as a result of a febrile seizure at 13 months. the

research on that shows that prolonged seizures (his febrile seizure was over

50 minutes in length) was the cause as much as we could f ind out. In

temporallobe epilepsy. age is another factor. the success of a surgery is

better at a younger age. meaning the recovery of memory skills is much

better. our sons was on his left side whichis also his dominant side but he

should during the wada procedure that his right side would recover for him.

they said as an adult it would have be longer for recovery of memory skills.

two things i ask you are how old is your daughter, and second is there a

definite focus such as in our case. manytimes there isn't and they have to do

in-depth electrodes to make sure they are removing the right area. yes there

are risks to surgery but what are the risks for not.? the questions we asked

before going in and i strongly suggest are to all is .

1- what are the risk of death. the precentage is less than 1 % percent as a

result of surgery now with the advancement of surgery.

2- is the facility a comprehensive surgery and haw many procedures have been

performed and can i speack with patients that have gone through it here. we

spoke to many families some with excellent outcomes and most with dramatic

improvement. one is improved with seizures but not emotionally to this day.

3- long term things such as memory and vision need to be address. visual

field needs to be performed way before along with neuropsych testing.

the figures quoted to us for 's surgery were better than 90% chances

of a cure and most definitely we would see a better than 80% improvement in

seizure freq. we got better than that.

do not compare an adult surgery to a child's. the physical condition of the

person prior to surgery i strongly beleive weighs heavily on the recuperation

our son was operated on at children's national medical center in DC on a

Monday morning and was in intensive care the first night. he was able to use

a porta potty on his own that night which amazed me and only suffered a bad

headache the next day after cat scan he was moved to regular room and

proceeded to play video games and get up and move around. he recuperated well

and was released that Thursday. For the next week he had a slight headache

and aphasia (word finding difficulty) but it improved daily and he was able

to go back to school relatively quickly.

, the EFA had a great symposium this past Nov. That discussed the very

issues that you have. your fear is real but so are the seizures. And it is

not a decision to go into lightly. contact a good epilepsy center and talk to

others and go to these symposiums and learn and learn more. Our day came when

one day our son was status for several hours and nothing worked and when he

finally improved and asked us to make an apt. to discuss surgery we knew that

we had to seriously think about it. I was afraid but i saw how these seizures

controlled every aspect of his life we had to do something for without it i

don't know for sure what would have happened to him. i have a lot of

literature on surgery but not on the computer that i have gotten from

symposiums that i would like to share but it might take a while to scan and i

cannot use this forum to send it so email me privately and I will be glad to

send it to you. So answer those few question I asked int he beginning and see

where she falls into in the category and oh does she have another diagnosis

that should be considered.

good luck.

[Guest guest]

linda that is is an old age for rasmussen patients the two families that i

have been in contact with the children are 6yrs now and other 4yr. that

disorder is very tricky to treat and in no way should it be considerd on

older patients(teenagers unless the seizures have become life threatening .)

if the seizures were not life threatening and not that frequent then why did

they do it. and the complex partials are not a result of the surgery but were

probaby alread there and now as a result will not spread to the whole brain.

in the two surgeries that i know of were done at johns hopkins in

baltimore.as for your comment about the good and bad out comes. our

epileptologist put us in contact with a family that didnot have a good

outcome.

the reason behind perosnal stories came from the stephen schachter series

(brain storms) i spoke tohim in great length about his series and if you have

rerad them you should. after reading it you realize that you aren't alone

with how you feel but one thing was missing .not much was included on surgery

outcomes. i asked him if he was planning on doing a book of this nature he

said yes but it was going to be along time befor eit was out. this book is in

no way to replace talking to others that have been through it. there is

nothing that can replace that. in fact at our center on purpose they had

ayoung man that was a volunteer that has seizures form multiple areas of the

brian and had two surgeries already and was looking forward to another.

sounds crazy. he spoke to us and jonathan and his determination to be seizure

free despite the odds was so encouraging . two years and 3 surgeries later he

is doing so well. he is controlled with one medicine and is working on his

college degree and is hopeful of being compeltely independent of meds soon.

so remember every brain is different and every story is different .if it were

simple they woul have a cure by now.

julie

[Guest guest]

janna , thanks for your kind words . absences sieizure are the most difficult

o treat and hopefully she willout grow them as many girls do. we have a girl

that lives up the street that had them all her life and now in adlescents

they see real signs of improvement. i have heard lately they are considering

keppra as a treatment option. i personally hate that drug but it has helped

many gain control.

good luck in seach of the answers, we all need them.

julie

[Guest guest]

julie do your nephews have seizures. ?

don't give up on anything that might improve your quality of life. the

options for the other are too short. what i haven't mentioned is about a

month before close friends of our lost their 8yr old son to lennox gauset

syndrom. he died from a seizure in his sleep. his seizures were

debilitating. the autopsy showed his heart was fine had drug levels were in

normal limits for him but had asphixiated .it was the difficult to go to the

funeral but it made our decesion for surgery easier. if death was anoptin it

wasn't for us that way.

julie

[Guest guest]

linda you can access pub med by regestering , just list occupation as other.

its and excellent resource. i th ink each center is going to have its own

statistics. and making sure it is a high level epilepsy center offering

comprehensive testing and treatment is the key.

julie

[Guest guest]

surgery being first line of treatment for intractable seizures is being done

at researhc centers across the country. it will not be complete for several

years.

[Guest guest]

,

Thank you for the information. I appreciate your kindness and I'm glad your

son is doing so well.

We're going the HBOT route, which is the closest I think we're going to get

to healing.

You asked about my daughter.. is 14 and has TLE. She developed grand

mal seizures one year after she had a febrile seizure at age 4, caused by a

virus that was making the rounds in the neighborhood. (i suspect it was a

form of varicella, which i understand can travel to the temporal lobes) She

has a lesion that may be the result of the virus, though I know the current

thinking is that febrile seizures can cause lesions if they last too long,

but I suspect the virus caused it. My son had the virus too, but recovered

with no problems. I understand the pertussis part of the DPT vaccine also

favors the temporal lobes and can cause lesions as well. So I wonder, could

have been vaccine injured? Even if he wasn't vaccinated within

hours or days of the seizure, vaccine infections can lie dormant for months

before showing CNS symptoms. If so, Dr. Carley may be able to help clear him

of infection - have you read Arnold's postings about her? (i think we

desperately need more courageous healers like her) Since first had

a febrile seizure, was a virus considered as the possible culprit? Strangely

enough, even though I was very clear in describing to the 'experts' the

virus had that seemed to bring all this on, her diagnosis was

'idiopathic epilepsy'. NO consideration of the virus at all, which I find

strange to say the least. I wonder how many others that happens to, and how

such negligence strengthens the 'accumulated evidence' that febrile seizures

can cause lesions.

How old is ? (i'm sorry if you mentioned it before and I've

forgotten) Was he put on AEDs when he was diagnosed? Might they have

contributed to his last status? I ask because I wonder if the imbalances in

the brain caused by AEDs periodically become too much for it, which triggers

the brain to re-balance its chemistry, causing a brain hurricane that brings

on status (and less serious seizures too). Though it's impossible to have

balanced brain chemistry while on AEDs, it surely doesn't prevent the brain

from trying. (i think nature always seeks balance, our bodies included)

hasn't had a single status episode since two months after her last

dose of tegretol. The last status (5 years ago) came out of the blue, a one

minute tonic clonic seizure every three minutes for half an hour, until i

gave her the 'hair of the dog' - 100 mg of tegretol (one twelfth of the dose

she was taking daily only four months before) not knowing if it would work,

but having no other choice but that or an ambulance, and within 45 minutes

she was sleeping like a baby! And that was the end of her status problem.

I think maybe the last, low dose of tegretol was just enough (satisfying a

last, grasping withdrawal symptom?) for her brain to fully and finally

balance its chemistry. (tegretol messes with sodium channels) Just my take

on it.

's been drug and status free for 5 years, though not seizure free at

this time because she's going through puberty. But her seizures are

manageable and they're expected to subside when her hormones settle down and

she's done growing. (she's not yet gotten her period) is almost always

in good spirits, which is apparently not the norm for TLE teens at all. Most

of them have 'behavorial' problems and/or serious depression (as well as

seizures), which I also think is mostly due to AEDs. A great source of

information is the book " Drug-Induced Neurological Disorders " by K.K. Jain,

MD (it costs over 100 bucks, but it's worth it) Everything you never wanted

to know is in there. Forewarned is forearmed.

, did lose any cognitive function, memory or movement from

surgery that hasn't returned? If so, I highly recommend HBOT to help any

deficits, it's superior to any other brain therapy, hands down (which in

these mad hatter times may explain why so few have heard of it) and greatly

helps speed healing. I'll post some info on it, coming up.

All the best,

> From: Topmom7698@...

> Reply-

> Date: Thu, 20 Feb 2003 16:20:36 EST

>

> Subject: Re: [ ] Surgery for Epilepsy??

>

> ,

> I have attempted to get research data and I don't think it means much. The

> factors that play into successful surgery are two things. location or origin

> of seizures (where are they coming from and is there a focus) . Our son had

> mesial temporal sclerosis. that is a formal name for scarring of the

> ammygdala and hippocampus as a result of a febrile seizure at 13 months. the

> research on that shows that prolonged seizures (his febrile seizure was over

> 50 minutes in length) was the cause as much as we could f ind out. In

> temporallobe epilepsy. age is another factor. the success of a surgery is

> better at a younger age. meaning the recovery of memory skills is much

> better. our sons was on his left side whichis also his dominant side but he

> should during the wada procedure that his right side would recover for him.

> they said as an adult it would have be longer for recovery of memory skills.

> two things i ask you are how old is your daughter, and second is there a

> definite focus such as in our case. manytimes there isn't and they have to do

> in-depth electrodes to make sure they are removing the right area. yes there

> are risks to surgery but what are the risks for not.? the questions we asked

> before going in and i strongly suggest are to all is .

> 1- what are the risk of death. the precentage is less than 1 % percent as a

> result of surgery now with the advancement of surgery.

> 2- is the facility a comprehensive surgery and haw many procedures have been

> performed and can i speack with patients that have gone through it here. we

> spoke to many families some with excellent outcomes and most with dramatic

> improvement. one is improved with seizures but not emotionally to this day.

> 3- long term things such as memory and vision need to be address. visual

> field needs to be performed way before along with neuropsych testing.

> the figures quoted to us for 's surgery were better than 90% chances

> of a cure and most definitely we would see a better than 80% improvement in

> seizure freq. we got better than that.

> do not compare an adult surgery to a child's. the physical condition of the

> person prior to surgery i strongly beleive weighs heavily on the recuperation

> our son was operated on at children's national medical center in DC on a

> Monday morning and was in intensive care the first night. he was able to use

> a porta potty on his own that night which amazed me and only suffered a bad

> headache the next day after cat scan he was moved to regular room and

> proceeded to play video games and get up and move around. he recuperated well

> and was released that Thursday. For the next week he had a slight headache

> and aphasia (word finding difficulty) but it improved daily and he was able

> to go back to school relatively quickly.

> , the EFA had a great symposium this past Nov. That discussed the very

> issues that you have. your fear is real but so are the seizures. And it is

> not a decision to go into lightly. contact a good epilepsy center and talk to

> others and go to these symposiums and learn and learn more. Our day came when

> one day our son was status for several hours and nothing worked and when he

> finally improved and asked us to make an apt. to discuss surgery we knew that

> we had to seriously think about it. I was afraid but i saw how these seizures

> controlled every aspect of his life we had to do something for without it i

> don't know for sure what would have happened to him. i have a lot of

> literature on surgery but not on the computer that i have gotten from

> symposiums that i would like to share but it might take a while to scan and i

> cannot use this forum to send it so email me privately and I will be glad to

> send it to you. So answer those few question I asked int he beginning and see

> where she falls into in the category and oh does she have another diagnosis

> that should be considered.

>

> good luck.

>

>

[Guest guest]

> From: Topmom7698@...

> linda that is is an old age for rasmussen patients the two families that i

> have been in contact with the children are 6yrs now and other 4yr. that

> disorder is very tricky to treat and in no way should it be considerd on

> older patients(teenagers unless the seizures have become life threatening .)

> if the seizures were not life threatening and not that frequent then why did

> they do it. and the complex partials are not a result of the surgery but were

> probaby alread there and now as a result will not spread to the whole brain.

> in the two surgeries that i know of were done at johns hopkins in

> baltimore.

I know , it's terrible. I read up on it when I heard the news - that

makes it all the more a crime, I think. When 's mom asked the neuro (i

think Dr. Wyllie was responsible) about his loss of equilibrium she was told

it was permanent because was too old for his brain to compensate or

whatever. As I said before, they did NOT mention this risk before the

surgery. The Cleveland Clinic is highly regarded yet what they did was a

crime, and wasn't the only victim in those weeks, as I said. You have

to wonder where else this goes on and how often.

> as for your comment about the good and bad out comes. our

> epileptologist put us in contact with a family that didnot have a good

> outcome.

Really? How many people did they put you in contact with who had a good

outcome?

> the reason behind perosnal stories came from the stephen schachter series

> (brain storms) i spoke tohim in great length about his series and if you have

> rerad them you should. after reading it you realize that you aren't alone

> with how you feel

I searched 'stephen schachter' and 'brain storms' but didn't come up with

anything. His name alone pulls up info on an acupuncturist. Is that him?

What is his series about?

> but one thing was missing .not much was included on surgery

> outcomes. i asked him if he was planning on doing a book of this nature he

> said yes but it was going to be along time befor eit was out. this book is in

> no way to replace talking to others that have been through it. there is

> nothing that can replace that.

Are you planning for your book to have an equal number of successful surgery

stories and unsuccessful surgery stories?

> in fact at our center on purpose they had

> ayoung man that was a volunteer that has seizures form multiple areas of the

> brian and had two surgeries already and was looking forward to another.

> sounds crazy. he spoke to us and jonathan and his determination to be seizure

> free despite the odds was so encouraging . two years and 3 surgeries later he

> is doing so well. he is controlled with one medicine and is working on his

> college degree and is hopeful of being compeltely independent of meds soon.

I think it's common practice to enlist the services of successful brain

surgery patients in various ways.

> so remember every brain is different and every story is different .if it were

> simple they woul have a cure by now.

> julie

I don't know.. I think if they'd focus more on the similarities than the

differences they'd find a cure much quicker. Medical research is BIG $$$, so

there's a strong incentive NOT to find cures - I think altruism is in short

supply in the medical industry. It's amazing how willfully ignorant some

people can be when money and power are involved. The cancer industry is the

worst, imo, followed closely by the CNS disease industry, which never met a

vaccine it didn't love. Vaccines are the handmaiden of neurologists, imo.

Don't get me wrong, I don't think they're all scumsuckinglizards, I know

there are a few good, smart doctors who aren't stuck in the medical

paradigm. I'm one of the fortunate people who found one - it was pure

serendipity through the Yellow Pages. 17 years ago when I brought my

firstborn to a pediatrician (who changed my world) to be vaccinated for the

first time, I knew nothing about vaccine injuries until that wonderful man

warned me. He told me the pertussis was a problem for some children so I

could opt not to give it to my son, so I didn't. He then told me about the

book on DPT vacccines " A Shot In The Dark " by Coulter, and that was

the beginning of my REAL vaccine education and the END of my childrens'

vaccines (and now i know why i got mild polio in 1960 after the live sabin

vaccine came to MA and polio increased by 700%). The good doctor moved away

from our area a year later, to the midwest I think. (i'm in massachusetts,

which has a medically 'conservative' power structure, especially then, that

probably scared him off - Larry Lerman, where are you? I love you!) And

today my daughter has a pediatrician who's supportive of the diet and our

vaccine exemptions and who's been a follower of alternative therapy ever

since surgery messed up his knee and he got to see things from the other

side. So I do know good doctors are out there, but you have to look really

hard, at least around here. (i'm still looking for a good neuro, though:)

Sorry, off on a tangent there.

[Guest guest]

linda,

i am going to try and write this for the 3rd time .aol is being weird today.

any way hopefully this will give you some insight. jonathan is now 14yrsold

too. he was 13 months old when he had his febrile seizure and 11 when he had

h is surgery. the febrile seizure was unique in that it lasted over 50

minutes and the fever was 106. there was nothing that we could attribute to

it. he was fine that morning and when down for his usual nap and then he

slept longer than usual and when i went in to wake him he was already seizing

and i called 911 immediately , nothign worked to stop the seizure. rectal

valium hleped minimally. he had not had any recent shots, had not been sick ,

nothing. when he cameout of the seizure and slept through the night he woke

as if nothing happened to him. he was fine. then a couple of months went by

and he woul have weird episodes that we weren't sure what hey were . so they

were checked out and determined to be everything but epilepsy. jonathan had

onlyhad a history of ear problems and tubes but nothing cognitively . and in

fact he was very advanced. then we had a time where they were g one for

nearly two years and then back and then they never stoppped and was formally

diagnosed with a video monitoring eeg and we got more seizures than we

wanted. we did not go the conventional med route at first . we tried b6 ,

biofeedback twice, ketogenic diet. we looked into a hypobaric chamber

treatment but we could not afford it and all the research showed that it

wasn't going to be as helpful as we wanted unless he had coborbidity with

possibly autism or other problem. so when things got really bad and he was

having everyday seizures without meds we tried dilantin at first to stop a

clustering and he was allergic and then tregretol and then carbatrol and that

gave him tremors.,pheno made him nuts and we tried gabitril and he hated that

, depakote allergic and oh a few others in between along with ketogenic diet.

nothing really stopped them frominterfering with his everyday life. see

jonathan would wet himself in school and it became humiliating for him. an

adolesent wetting and trying to be normal. see jonathan was an honors student

and star soccer player. and he was and is determined to never have it get in

his way. when we explored more meds and although we got minimal relief with

neurontin and keppra for a little bit then breakthroughs would occur and

then went status again that was it. we swore we would never pursue surgery as

an option but then jonathan had asked. se jonathan has mesial temporal

scerosis as a result of the febrile seizure and temp. we too wondered which

caused it and today research shows it's probably a combination. but dwellign

on the cause did nto become our focus. our son was miserable form the

seizures, they were making him depressed along with the meds. we even looked

into VNS but found through research that would not offer him a cure. so

asked us to pursue surgery and after going through the testing wada

procedure and neuropsych testing. we were all in agreement that jonathan

would be able to recover fully from this even thoughit was on his dominant

side. it was a risk and the final decesion didn't come until after 2 months

after the wada. we took our time and we were not going to be led into it

blindly. as for cognitve abilitie and motor function is doing fine.

he is not honors anymore but on grade level and with tutoring and help with a

speech pathologist on memory and language issues he is doing fine. that is

truly the key. determination is the other. when we went into surgery jonathan

was on three aed's along with b6 and celexa for depressiion and anxiety. he

is now down to a very smal does of topmax and will probably come off of that

in april at our next appointment. I have several families that i am in

contact with whose children outgrew there seizures even with MTS but their

seizures were never as frequent or violent as jonathans. so we all wonder

what would happen if we waited, would they have gone away without med. we

even tried hypnotherepy and yoga so dow hat you may we do not second guess

our decesion and don't second guess yours. as long as has the ability

to have a normal life and do the things she wants i agree with you. but ours

will never be seond guessed by us.

good luck

julie

[Guest guest]

, I hope you don't think I'm second guessing your decision. My heart

goes out to you, I know how hard it is, obviously. I just want to share what

I've learned in hopes of helping others here, just as you do. That's why I'm

questioning and sharing my concerns about brain surgery, as well as AEDs.

I'm sorry if you objected to my questions, I won't ask any more of you.

And I'm sorry if you objected to my question about your book. I asked

whether your book would be balanced equally with good and bad experiences

because I believe something as serious as brain surgery requires it. If not,

it amounts to an endorsement and I'm doubtful that most people with epilepsy

would be well served by that. Just my opinion.

All the best,

> From: Topmom7698@...

> so do what you may we do not second guess

> our decesion and don't second guess yours. as long as has the ability

> to have a normal life and do the things she wants i agree with you. but ours

> will never be seond guessed by us.

>

> good luck

> julie

[Guest guest]

linda,

In no way do I object to anything you say about epilepsy surgery. i am glad

that we all are able to debate about these issues and realize that there are

many options out there. as far as my book. i will not be finished for a long

time and it will not be published until it is well balanced of good and bad.

all the proceeds will go a not for profit camp for children with epilepsy.

never think i am judging you for your decesion. i have been at this way to

long to judge anyone.

best of luck.

julie

[Guest guest]

> From: Topmom7698@...

> as far as my book. i will not be finished for a long

> time and it will not be published until it is well balanced of good and bad.

> all the proceeds will go a not for profit camp for children with epilepsy.

> julie

,

Best of luck with your book. It's awesome that you're donating all the

proceeds to a camp for childen with epilepsy!