Re: Surgery for Epilepsy??

[Guest guest]

I hope this helps.

Please do not taint brain surgery for those who are severely affected by

epilepsy. I know several adults who are seizure free due to brain surgery

and to date it is our only cure for Temporal Lobe Epilepsy (or epilepsy

caused by a lesion) as it excises the part of the brain responsible for

emitting the abnormal electrical discharges. Children with cortical dysplasia

usually require surgery as the continued seizures in their cases will damage

the remaining healthy brain tissue.

Please keep in mind one must know their seizure type and from where in the

brain the discharges are coming to be able to understand their own personal

form of epilepsy. Brain surgery is not for everyone, approximately 10-15% of

those people with epilepsy or seizures coming from parts of the brain that

are operable. You and I cannot say who is a candidate.

Unless you are an experienced epileptologist who works very closely with a

neurosurgeon, you comments could be depriving people of a great option for a

possible cure.

If you are concerned about damaging precious brain tissue, we know that

uncontrolled seizures damage brain tissue, without a possible cure. Did you

also know the Complex Partial Seizures/Temporal Lobe Epilepsies are usually

life long epilepsies that do not go away. Medication merely suppresses the

symptom-seizures. The cause is usually a lesion- injured part of the brain

which will not heal itself. Of course there is risk associated with surgery.

One has to weigh the risk with the risk of life long, uncontrolled seizures

that contribute to damage and shrinking of parts of the brain.

Please do not tell people surgery is drastic, shocking, etc... These are your

values that can negatively influence others. Surgery is not an option for

85% of people with Epilepsy. You must know where it is coming from and what

is causing it and you don't know that about all the people these e-mails

reach.

I am just asking you to be more responsible about blanket statements

concerning surgery. After all, Epilepsy itself cause the most dramatic brain

activity the brain will ever experience. Frequent uncontrolled seizures can

cause great morbidity and death.

I am aquatinted with an adult who had brain surgery this last December and

she seizure free and says without the seizures her entire well being has

improved and she has suffered with epilepsy for over 40 years. How would you

feel if you discouraged this woman who now is in the process of regaining her

life and independence, not to mention her license. She is ecstatic and she

deserves this happiness.

I am not one for e-mail battling, I only want what everyone else on this list

wants options, factual information, and an opportunity to share helpful

information with others.

If you anyone has uncontrolled seizures which have reduced your quality of

life, you should see an epileptologist and try and figure out where the

seizures are coming from and what is causing the seizures. Epileptologists

are far more experienced with epilepsy than your typical neurologist. An

epilepstologist is the only person who can begin the detailed evaluation for

brain surgery.

I urge everyone to continue to search original causes for their seizures and

keep searching for treatments that offer relief from seizures. I have

witnessed remarkable recoveries in people who have controlled their seizures

through meds, ketogenic diet, alternative treatments and brain surgery.

Janna

[Guest guest]

arnold,

our son had sucessful surgery 2 years ago and it is not drastic when you

consider a life with life threatening seizures. having a focus is the key to

successfull surgery. when asked if it casues more scarring and the answer is

no. they go through fissures and areas that won't cause damamge. so please

don't pass judgement on something you know very little about.

[Guest guest]

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

moorewise@...:

> I am aquatinted with an adult who had brain surgery this last December and

> she seizure free

Janna,

you do not mean to call this success with a follow up of just three lousy

months???

you do not mean to maintain that it is evidence based medicine what you are

referring to???

Caution with cutting off brain tissue, please.

Katharina

[Guest guest]

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

[Guest guest]

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

moorewise@...:

> . Did you

> also know the Complex Partial Seizures/Temporal Lobe Epilepsies are usually

> life long epilepsies that do not go away.

So?!

Many people have lived with CPS and medication, feeling horrible, then they

got the right treatment, and that was to get rid of the meds, WITH NO

SURGERY, and they are seizure free for months and years. What they win is

quality of life. Certainly we cannot witch away the lesion. But a brain can

unlearn to seize. And there is evidence based medicine literature for that.

Katharina

[Guest guest]

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

moorewise@...:

> to date it is our o n l y cure for Temporal Lobe Epilepsy (or epilepsy

> caused by a lesion) as it excises the part of the brain responsible for

> emitting the abnormal electrical discharges.

Janna,

This is a gross rubbish! Whoever told you that is ignorant and irresponsible.

Katharina

[Guest guest]

I must say I am quite shocked at some of the responses towards Janna.

I know Janna personally and she is a wealth of knowledge and information to

adults and kids with epilepsy. As the mother of a young daughter with

epilepsy, she has made it her job and mission to help others with epilepsy

and she is very good at it! She is open to any AND all treatments for

epilepsy and making sure people are well informed about ALL of their

options. It was Janna who gave me my first information on alternative

therapy choices for epilepsy treatment for my son. I believe everyone has

their opinions and beliefs in regards to handling their personal struggles

with Epilepsy, whether it is personal first hand knowledge or information

they have learned, that they wish to pass on to help others. I feel

everyone should take the information they learn and do with it what they

wish, use it or delete it.... But if it helps 1 person in a positive

way....it is well worth posting!

Jill

Re: [ ] Surgery for Epilepsy??

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

[Guest guest]

moorewise 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 elipeticus

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 heresay from Neurologists it would be great

if you would share that with us all. Thanks.

M.

[Guest guest]

In einer eMail vom 19.02.03 06:43:13 (MEZ) Mitteleuropäische Zeit schreibt

lingood@...:

> Mike,

>

> It appears the 'experts' are now trying to pin SUDEP on seizures, as this

> article lays out: http://www.nytimes.com/2003/02/18/science/18EPIL.html

> But isn't it obvious that AEDs are the likely cause of SUDEP? It strikes

> people with uncontrolled seizures because they're on more and higher doses

> of DEADLY DRUGS. SUDEP is caused by cardiac arrest and many AEDs cause heart

> problems (among other deadly things), so HELLO! And the shrinking of the

> hippothalamus is also related to AEDs. They should be challenged on this big

> time. It's sickening - they're going to capitalize on the misery AEDs have

> caused while fully avoiding responsibility. So now many more unwary people

> will be drugged, slashed and zapped, and God only knows what new genetic

> experiments will await them. It's a dangerous lie - I hope it goes nowhere.

>

> G.

>

>

Thank goodness, here are reasonable people who know what they are talking

about.

, where did you find the shrinkage of hypothalamus? I have literature

about shrinkage of the mass of the hippocampus. Please, teach me.

Katharina

[Guest guest]

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

moorewise@...:

> An

> epilepstologist is the only person who can begin the detailed evaluation

> for

> brain surgery.

>

>

Janna,

I guess you must have a lot of money in the bank to pay for dammages. In one

case, in the US, an MD had to pay eighteen million dollars in dammages in an

out of court settlement. The MD seeked the out of court settlement, because

he did not want his name drawn into court where his colleagues, a whole

university team, had to stand before the judge. The judge was so very much

angered about such behavior, that he quoted the doctors full name and the sum

in the court protocol, so his name is in the affair nevertheless .

You know what? that MD had made a m i s d i a g n o s e , which happens

often, but goes unrecognized by medical laymen. And the medical people are a

close knit family.......

You know what? that MD had diagnosed a birth defect, whereas the cause of the

insufficient myelinization, and therefore seizures, was an anomaly in the

metabolism of vitamine B6. If the parents had followed the advice of Arnold,

they would have been better off with the development of their little child.

Maybe it is not quite so stupid to listen to Arnold??? One thing is sure: He

is not the one who would have had to pay the dammages.......

But the MD did not know about vitamine B6 in this context, or did not take

this into consideration, or just brushed it off as " alternative " , whatever.

The irreversible (because in developmental myelinization ) consequences are

all on the back of the patient and the parents.

How many times have I cried my eyes red over the medical records and the fate

of my clients?

When Arnold alerts and recommends caution about drastic measures, others may

well " just sit and listen " .

I hope I raised a big black cloud of dust over the head of surgery being just

" one more option " , and I will not stop to needle the topic, until people

become attentive to the dimension, or impact, surgical treatment has.

Katharina

[Guest guest]

> From: Topmom7698@...

when asked if it casues more scarring and the answer is

> no. they go through fissures and areas that won't cause damamge.

,

I'm just trying to understand this. How do they 'go through fissures and

areas that won't cause damage'? Doesn't the cut from the point of incision

to the lesion cause additional brain trauma and layers of scarring? Might

this increase seizures? Aren't there alot of 'maybe's to alot of questions

about brain surgery? Being such a high risk surgery, it doesn't seem logical

to me to venture in this direction with so many 'maybe's, so little

certainty, so little information available, yet so much risk. (brain

surgeons are sued more than any other medical specialists)

Being that so much unforeseen harm can be caused by brain surgery, you'd

think there would be more solid information to base one's choices on - or

maybe that's why there isn't? Everything I've found so far is so convoluted,

all the studies read to me as though they're trying to imply significant

effectiveness with little risk and insignificant side effects, which seems

grossly misreprentative, imo. So where can you find straight statistics (no

spin!) for various types of brain surgery? How many people have gone seizure

free, off drugs, regained cognitive function, reduced seizures, no reduced

seizures, increased seizures, increased drugs, no gain in cognitive

function, further loss of cognitive function, surgery complications,

post-surgery complications, death?

That's what I'd like to know.

G.

[Guest guest]

Mike,

It appears the 'experts' are now trying to pin SUDEP on seizures, as this

article lays out: http://www.nytimes.com/2003/02/18/science/18EPIL.html

But isn't it obvious that AEDs are the likely cause of SUDEP? It strikes

people with uncontrolled seizures because they're on more and higher doses

of DEADLY DRUGS. SUDEP is caused by cardiac arrest and many AEDs cause heart

problems (among other deadly things), so HELLO! And the shrinking of the

hippothalamus is also related to AEDs. They should be challenged on this big

time. It's sickening - they're going to capitalize on the misery AEDs have

caused while fully avoiding responsibility. So now many more unwary people

will be drugged, slashed and zapped, and God only knows what new genetic

experiments will await them. It's a dangerous lie - I hope it goes nowhere.

G.

> From: " Mike Mchugh " <mcpitza@...>

> 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.>

[Guest guest]

Janna,

that was an excellent response to the question of surgery. as the parents of

a son with uncontrolled seizures for many years we thought we would never

venture down that path . but when you look at them and live with them daily

and see how the seizures affected his everyday life and how miserable and

depressed he was. we knew in our hearts that without some further

intervention our son would die as a result of the seizures or suicide. we

tried everything out there conventional meds never gave him real control ,

ketogenic diet made him sick, we tried investigational therepies, hypnosis

and biofeedback, herbal meds and vitamins . b6 does help slightly. but the

issue remains of quality of life. our son has a life again. it is not easy

but he doesn't walk around in fog from the 20 something pills he took per day

and is not wet ting his pants from seizures, he is not status epileptic

anymore and hasn't been taken tot he hosp .near death as a result. he is

happy for the first time in his life. he snow boards, plays soccer is in

cival air patrol and will attend glider camp this summer. his life is full .

he will be strong as a result and he will have much to endure and over come

but now he is able.Remeber surgery is not an option for all , actually very

few. the figures today stand at about 20% of intractable patients. surgery

is best suited for children but has been successful for many adluts. memory

issues are more idfficult to overcome for adults but it can be done.

don't ever give up on a dream for we all have different ways of getting

there.

good luck to all.

JULIE

[Guest guest]

kathrina , you really need to attend a conference on epilepsy . think of this

in simple terms. you have a electric wire and in the middle something is

wrong a crimp somthing for it to work not exaxtly right. and although most of

the time it is fine when it is over worked , tired or what ever it goes

astray and misfires. this is tru of some form of epilepsy. you remove that

area and that transfering of electrical stimuli is no longer blocked and the

seizures stopped. no one understands it forsure but we do know that it works

with surgery as in the VNS. so stop being so stubborn . talk to an

epileptologist , go to a conference and learn and learn somemore. we all need

to.

julie

[Guest guest]

michael not ncessarily true. the seizures if repeated enough can casue

damage. as in a febrile seizure that later turns into epilepsy. so it works

both ways.

[Guest guest]

LInda,

allt he questions that youhave a good ones and it take research and talking

to others that have gone through it to give you the answers. the surgery my

son had done is now done with a microscope. withint he brain there are

connective areas that seperate the regions and going through them is odne

microsurgically. for example my mom had brian surgery in 1977 to remove a

tumorin her temporallobe . her whole lobe was removed because it was u

nderneath. today the techniques do not compare. I am writting a book on

epilepsy surgery fromt he patient family prospective becasue i felt there was

too little out there for people and too few that had crossed this path to

give us real insight on it. with the figures i have now is that the majority

are temporal lobe epilepsy patients. only 20 % did the drs find a focus .

only one is not completelt seizure free but is dramatically improved and down

to one med. comapared to 3 before surgery. i have 2 with hemisphere and 3

frontal. the hemispehre patients are the most dramatic improvement in

seizure improvement and frontal focus a little more tricky and the numbers

go down. you have got to do more reading. go to medscape read the journals.

attend conferences on it. I still do and our sons surgery was 2 years ago and

i talk with families considering it all the time.if you want i will be glad

to give you links on surgery . emial me directly if interested.

Topmom7698@...

[Guest guest]

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.

In a message dated 2/18/2003 2:27:58 PM Pacific Standard Time,

TVA12082208@... writes:

> Janna,

> you do not mean to call this success with a follow up of just three lousy

> months???

> you do not mean to maintain that it is evidence based medicine what you are

>

> referring to???

> Caution with cutting off brain tissue, please.

> Katharina

[Guest guest]

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]

are you talking about an MD or an epileptologist? apples and oranges

I don't want to argue just inform, You sound very angry, anger gets us

nowhere, hope and energy directed at finding the true problem causing

epilepsy is where I will put my energy.

Janna

In a message dated 2/19/2003 12:01:36 AM Pacific Standard Time,

TVA12082208@... writes:

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

> moorewise@...:

>

>

> > An

> > epilepstologist is the only person who can begin the detailed evaluation

> > for

> > brain surgery.

> >

> >

>

> Janna,

> I guess you must have a lot of money in the bank to pay for dammages. In

> one

> case, in the US, an MD had to pay eighteen million dollars in dammages in

> an

> out of court settlement. The MD seeked the out of court settlement, because

>

> he did not want his name drawn into court where his colleagues, a whole

> university team, had to stand before the judge. The judge was so very much

> angered about such behavior, that he quoted the doctors full name and the

> sum

> in the court protocol, so his name is in the affair nevertheless .

>

> You know what? that MD had made a m i s d i a g n o s e , which happens

>

> often, but goes unrecognized by medical laymen. And the medical people are

> a

> close knit family.......

>

> You know what? that MD had diagnosed a birth defect, whereas the cause of

> the

> insufficient myelinization, and therefore seizures, was an anomaly in the

> metabolism of vitamine B6. If the parents had followed the advice of

> Arnold,

> they would have been better off with the development of their little child.

>

> Maybe it is not quite so stupid to listen to Arnold??? One thing is sure:

> He

> is not the one who would have had to pay the dammages.......

>

> But the MD did not know about vitamine B6 in this context, or did not take

> this into consideration, or just brushed it off as " alternative " , whatever.

>

> The irreversible (because in developmental myelinization ) consequences are

>

> all on the back of the patient and the parents.

>

> How many times have I cried my eyes red over the medical records and the

> fate

> of my clients?

> When Arnold alerts and recommends caution about drastic measures, others

> may

> well " just sit and listen " .

>

> I hope I raised a big black cloud of dust over the head of surgery being

> just

> " one more option " , and I will not stop to needle the topic, until people

> become attentive to the dimension, or impact, surgical treatment has.

> Katharina

[Guest guest]

:

Your story is heartwarming and the very reason why surgery is just one option

for those with epilepsy. 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.

Your story will inspire many.

Thanks for sharing and enjoy every day, you have worked hard for it.

Janna

In a message dated 2/19/2003 6:46:02 AM Pacific Standard Time,

Topmom7698@... writes:

>

>

>

> Janna,

> that was an excellent response to the question of surgery. as the parents

> of

> a son with uncontrolled seizures for many years we thought we would never

> venture down that path . but when you look at them and live with them daily

>

> and see how the seizures affected his everyday life and how miserable and

> depressed he was. we knew in our hearts that without some further

> intervention our son would die as a result of the seizures or suicide. we

> tried everything out there conventional meds never gave him real control ,

> ketogenic diet made him sick, we tried investigational therepies, hypnosis

>

> and biofeedback, herbal meds and vitamins . b6 does help slightly. but the

> issue remains of quality of life. our son has a life again. it is not easy

> but he doesn't walk around in fog from the 20 something pills he took per

> day

> and is not wet ting his pants from seizures, he is not status epileptic

> anymore and hasn't been taken tot he hosp .near death as a result. he is

> happy for the first time in his life. he snow boards, plays soccer is in

> cival air patrol and will attend glider camp this summer. his life is full

> .

> he will be strong as a result and he will have much to endure and over come

>

> but now he is able.Remeber surgery is not an option for all , actually very

>

> few. the figures today stand at about 20% of intractable patients. surgery

>

> is best suited for children but has been successful for many adluts. memory

>

> issues are more idfficult to overcome for adults but it can be done.

> don't ever give up on a dream for we all have different ways of getting

> there.

> good luck to all.

>

> JULIE

[Guest guest]

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]

:

I think it is a great idea to write a book from a family's point of

view for I know I worried mine when I had a lobotomy 6 yrs ago. The 6 hour

process was sucessful until 3 days later I got chemical mengittis from being

allergic to the steriods used in the surgery.

That caused extreme migraines and fever. I was not re-admited to the

hospital becuase I was on medicade, but was treated as an outpatient. The

only problem was that i lived 80 miles from the hospital and in a different

state. I was given medication through IV every 6 hours. It was fun having

to go back and forth for 6 days and nights. I know my parents were about to

go crazy. I had migraines so bad that i bruised my head with the paslms of

my hands holding my head to keep it from busting off my shoulders.

Other than the mengittis, I found the pre-opt testing worse than the

surgery. I was seizure free for 14 months and then the seizures returned

worse than ever. So, I'm back to step one. I would go through the sam

ething again for I have 2 nephews whom have the same gene's as I do and I'll

be the ginny pig to help them. It is worth it to help them. They are 10 and

12. They have no idea what is coming in the future but i do.

[Guest guest]

,

Woops! I meant to type 'hippocampus'. So much for knowing what I'm talking

about. lol -

> From: TVA12082208@...

>

> Thank goodness, here are reasonable people who know what they are talking

> about.

> , where did you find the shrinkage of hypothalamus? I have literature

> about shrinkage of the mass of the hippocampus. Please, teach me.

> Katharina

[Guest guest]

,

Thanks for attempting to answer my questions. Hearing of individual

experiences is somewhat helpful, I think, but they don't really tell the

story, only a very tiny piece of it, so they can easily be misleading. I've

done research on brain surgery, but it all reads the same way, it's grossly

incomplete - most of the questions I posed to you are simply not answered in

these published studies. (my daughter has TLE, so surgery has been suggested

to us) There must be statistics gathered somewhere or neurosurgeons would be

operating in the dark, so to speak. So where are they? I want to know

exactly what the risks are, and the best way of gauging that is through

thorough, unadulterated statistics. If there are none available, something

is amiss, imo. I don't believe they're unavailable or that nobody is keeping

track. Have you attempted to locate these stats for your book?

Thanks!

> From: Topmom7698@...

> Reply-

> Date: Wed, 19 Feb 2003 10:19:29 EST

>

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

>

> LInda,

> allt he questions that youhave a good ones and it take research and talking

> to others that have gone through it to give you the answers. the surgery my

> son had done is now done with a microscope. withint he brain there are

> connective areas that seperate the regions and going through them is odne

> microsurgically. for example my mom had brian surgery in 1977 to remove a

> tumorin her temporallobe . her whole lobe was removed because it was u

> nderneath. today the techniques do not compare. I am writting a book on

> epilepsy surgery fromt he patient family prospective becasue i felt there was

> too little out there for people and too few that had crossed this path to

> give us real insight on it. with the figures i have now is that the majority

> are temporal lobe epilepsy patients. only 20 % did the drs find a focus .

> only one is not completelt seizure free but is dramatically improved and down

> to one med. comapared to 3 before surgery. i have 2 with hemisphere and 3

> frontal. the hemispehre patients are the most dramatic improvement in

> seizure improvement and frontal focus a little more tricky and the numbers

> go down. you have got to do more reading. go to medscape read the journals.

> attend conferences on it. I still do and our sons surgery was 2 years ago and

> i talk with families considering it all the time.if you want i will be glad

> to give you links on surgery . emial me directly if interested.

>

>

> Topmom7698@...

[Guest guest]

I understand that you are saying it is so but I think it would be helpful to me

and others to understand where you are accumulating this information from. You

say if the seizure is repeated enough.. what exactly would consitute enough ?

What studies back this up ? Is this just something that is common belief... in

essence what we used to call " old wives tales " . Some people are still putting

butter on burns... we need to question these long held " beliefs " .

Re: [ ] Surgery for Epilepsy??

michael not ncessarily true. the seizures if repeated enough can casue

damage. as in a febrile seizure that later turns into epilepsy. so it works

both ways.