question about surgery

[Hand of Blood]

when do u get offered it? or why does only some people get offered it?

does it even cure having sezuires?


i dont think i could ever get it done i be to scared.... but it just seems where im from its not reallly offered to people!

 

[kristol_winter]

i live in the US-Arizona. i was offered the surgery and i decided that i want to go thru with it. honestly, its the most terrifying thing i can think of going thru.. but its supposed to help. so im hoping and praying it "cures" me..
my doctor told me that they try to only offer it to ppl who cant control their seizures with meds. ive only had seizures since december 7, 2007, but all the meds ive been on havent helped. doctors said i have a good chance to get rid of my seizures.

 

[Cint]

I had a left temporal lobectomy back in 1990 after having seizures for 10 years and trying several meds, none worked. My seizures (CP)were increasing, so they suggested the surgery. It took me nearly a year before I decided to have it done. But after I had it done, I was seizure-free for only 14 months. The seizures came back with vengeance for me. I started having more CP + TC's. They tried me on many more meds, to no avail. I have the VNS, but still have seizures.

 

[Paorrin]

My daughter is a candidate surgery to treat her very refactory seizures. We were offered two types of surgery a corpus callosotomy and a VNS. We did a VNS, the lesser of two evils with not much results it helps with stopping some seizure but doesnt prevent any. A corpus callosotomy is when they seperate the connection between the right and left side of brain to prevent a generlized seizure. There are many types of surgery for epilepsy. It depends if there is a focal point (like a lesion or area in one spot of the brain) or like my daughter that has a migrational disorder of the brain so there is no one focal spot to cut out to stop the atonic (drop) seizures. We desided to do the vns first and are trying our best not to go for the big surgery.

Robert father of Abigail 11 yo LGS , SBH

 

[Nakamova]

Surgery is usually only offered as a last resort, and only in cases where there's a clear, well-defined area of the brain where the seizures can be seen to originate. In addition, that area needs to one that can be safely removed without damaging crucial brain functions. It has definitely helped some folks, but there's the risk that scarring from the surgery will lead to additional problems, and there's no guarantee of complete seizure control. Usually you need to continue to take meds afterwards.

 

[CQ:)]

My neuro suggested to me at the end of 2009 that I think about having surgery after he tried me on 5 different epilepsy meds over 7 years & none of them helped control the seizures.

I was referred to an epitiologist who I saw June last year & he went through my whole epilepsy history & said he felt I was a good candidate for surgery but I still had to have tests. I then had to have a series of different tests (PET scan, SPECT scan, MRIs, 1 week stay in hospital for Video EEG). I was offered the surgery last November & I had left side frontal lobe labotomy in March this year.

Having surgery is a very big decision to make & for some people it does work, unfortunatly for others it doesn't work. I spoke to my parents & siblings about the surgery & even though we knew there were risks involved we all agreed it was worth a try if it could help control my seizures.
When the time for my surgery got close I didn't wanted to go into the surgery thinking of it as 'curing' my seizures because I didn't want to get my hopes up & get disappointed if the surgery didn't work. I just hoped the surgery would lessen the auras (which I took quite regularly) & if the surgery did stop my seizures then that was a bonus.

I was lucky enough to have a good recovery & the last seizure I took was an aura about 2 weeks before the surgery.
Of course it would be great if I never had a seizure again but I am still happy because before the surgery the longest I went without an aura was about 1 month & a complex partial was about 5 months.

Usually you need to continue to take meds afterwards.

I am still on Anti Epilepsy Drugs & at the moment take Keppra & Tegretol. If I am still seizure free in March next year my neurologists at the epilepsy clinic I go to are going to slowly take me of one of the medications. They have said it will most likely be the Keppra that I will be taken of but I will know more in March when I go for my 12 month follow up appt lol. I will most likely be on one med for the rest of my life but just on a lower doseage.

 

[suebear]

I've been doing better now since the DBS for Epilepsy which was done end of August. Prior to this I had a temporal resection in 1995 which only gave me the ability to be seizure free for four years. It was not until 2007 when I had a VNS put in. The biggest issue has been all of the medication I have been on -- over 20 different types and none of them are solid.

We did find two that can work together however which is a good thing and that is what we're sticking with. Something that the epitologist did inform me of is as a person ages, his or her brain changes and age can at times have a change on where the seizures are coming from. I found that to be interesting because over the years, mine have moved. Of course, that is in my situation; other patient's situations will be different as not everyone is alike but it is very important to ask questions so everyone is working together.

 

[bruce]

i live in the US-Arizona. i was offered the surgery and i decided that i want to go thru with it. honestly, its the most terrifying thing i can think of going thru.. but its supposed to help. so im hoping and praying it "cures" me..
my doctor told me that they try to only offer it to ppl who cant control their seizures with meds. ive only had seizures since december 7, 2007, but all the meds ive been on havent helped. doctors said i have a good chance to get rid of my seizures.

only as an absolute LAST RESORT. i had a right temporal lobe ectomy in march 98. didnt wake up til march 99. previously experienced weekly partial complex seizures ...after waking up i had an average of 10 seizures every day.... no thanks to my doctors that i am now seizure free nearly 5 years... I OWE MY LIFE TO MY PHARMACIST. i had a seizure while picking up my meds and the parmacist immediately sat me down . after coming out of it we spoke for over an hour. he gave me a phone number to call which led me to speak with 1 of the scientists responsible for inventing dilantin. he gave me very specific info{ on condition of anonnimity} . he advised me to go to an independent walk in clinic and tell them " i have epilepsy and no family doctor, need refill on my prescriptions " this scientist gave me specific dosage and meds to ask for. the doctor at the clinic didnt hesitate to give me the prescripts. i filled them .. within 10 days i was virtually seizure free . i am religious about taking my meds and never skip a dose... THE LAW SUIT IS UNDERWAY !!

 

[suebear]

I have always believed that a person reacts differently to surgery just as they react differently to medication.

 

[Elaine H]

I just read your question about brain surgery, bless you, it sounds like you are scared, but then who wouldn't be?! I've had two lots of brain surgery now, once in 1999 and again in 2008, so being honest, there are no guarantees that it can work for everyone, they say epilepsy can never be cured, only controlled, all I can say is that it has improved things for me by at least 75% But, and the big but is, that it still controls my life to a certain extent, by not allowing me to have a driving license, and here in the UK, no license, and life can be difficult, as public transport is pretty bad over here!
Only 4-5% of people with epilepsy will be suitable for surgery,and have to have a focus on their brain, the doctors have to know whereabouts your seizures are starting in the brain, so when I was told that I was suitable in 1999 to have a Temporal Lesionectomy on the right temporal lobe, I couldn't really say no, when there were others in the hospital with me, who were told no, they couldn't have it, I felt quite honoured. I guess everyone wants to know if it hurts, and yes, it hurts, but nowhere near as bad as you would imagine, I was five years seizure free, which was fantastic, then for some reason, nobody has ever really been able to tell me why, my simple and complex partials started again. I developed what they call Hippocampal Sclerosis, and had further surgery a Right Temporal Resection in 2008, I asked the doc would he put a zip in my head, just in case I was back again five years later??!! Yes, it hurt, but seriously, the pain management these hospitals offer nowadays soon sorts the pain out. Messes your hi-lights up though!!
I really just have mainly cluster seizures now, but I think anyone on here would agree that stress and worry can aggravate our epilepsy, and 2011 has not been good for me, I've had a few Atonic seizures,or Drop Attacks as they are also known, so, I wish I could tell you that surgery cures it for us all , god I wish I could, but I just try and keep positive, and I have a friend who is ill with cancer and so incredibly strong and positive, it helps me!
If you get the chance for surgery, the wonderful folk on here will help you, and I try not to be too dramatic about my surgeries, every human being is different, there are risks with every type of surgery, having the anaesthetic itself is a risk!! All the best to you!!

Lol

Lainey
XXXX
Lol

 

[bruce]

I have been doing a great deal of research on ,whether or not adult epilepsy sufferers are consistent in taking their medication. I have found that only 25% of the people i've spoken with would say that they " almost never miss a dose " and are consistent with the time of day they take their meds. There are a large number of people 45% who admit to regularly forgetting their meds { more than 5 times per month }. And another 20% who were irregular about the time of day they took their meds. Of the remaing 10% half were unsure or didnt want to answer . The balance of people 5% very sadly said " they had given up ,and were no longer taking their meds. Very unfortunate. I personaly have learned the hard way just how important it is to be " consistent " in taking your medication.

 

[suebear]

I have been doing a great deal of research on ,whether or not adult epilepsy sufferers are consistent in taking their medication. I have found that only 25% of the people i've spoken with would say that they " almost never miss a dose " and are consistent with the time of day they take their meds. There are a large number of people 45% who admit to regularly forgetting their meds { more than 5 times per month }. And another 20% who were irregular about the time of day they took their meds. Of the remaing 10% half were unsure or didnt want to answer . The balance of people 5% very sadly said " they had given up ,and were no longer taking their meds. Very unfortunate. I personaly have learned the hard way just how important it is to be " consistent " in taking your medication.

I've had epilepsy since the age of 18 months. I'm one of the rarities I suppose. onder:

As of August 2011, I just had the DBS for Epilepsy surgery. Prior to that, I had the VNS in 2007. and I had a temporal resection in 1995. I was lucky enough to experience four years of being seizure free during the time of the temporal resection however the seizures did manage to break through again. Since that time, we have not been able to get them back under control. I have been on over 20 medications easily. I do take the medication religiously and I take it at a specific time daily using a medication reminder.

I am not sure where you are getting your statistics from however I would be interested to find out. The reason I ask is because when I see statistics such as what you have mentioned, I also expect to see a resource where that data comes from so it can be verified. I am a doctorate student who is very accustomed to working with references and needing to back up every citation so it is very natural to provide references in my writing especially when it comes to statistical facts.

A patient does learn the hard way if he or she does not follow doctor's orders, that is true. I have faulted and experienced seizures when not listening to my neurologist. Even though there was a brief period of time for that to take place, it did not last as my own actions made me realize my health was most important.

 

[bruce]

re: my med. regularity study

The statistics which I quoted in my earlier post were taken from a very informal and voluntary " fact sheet" which with the aid of my pharmacist was distributed to and completed by 205 individuals age 18 and over ,who were being treated with medication for various epileptic / seizure disorders .
I personally am not a medical professional in any respect . I am simply a man who has learned the hard way , how to deal with being epileptic. looking back now I see that my personal sense of pride kept me from accepting that I had a handicap which was going to have a marked impact on many of the day to day activities of my life.
It took me a long time to overcome the stigma attached to epilepsy and come to grips with the fact that I may have to accept some help and advice from others , at least from time to time.
I have personally grown a great deal over these past few years and now I find it much easier to accept the fact that I have a few limitations. I know i will never pilot an airplane for instance ,and I know the roads are a much safer place with me in the passenger seat , rather than behind the wheel.

If I had , had the benfefit of knowing several years ago that I could be seizure free and lead a relatively un-restricted life simply by stringently following a routine as far as taking my medication , how much improved my life would have been. I have had the opportunity on several ocasssions in the past year and a half , to meet with some of the people who volunteered to fill out my study questionaires and have hopefully made a positive impression on at least1 or 2 . my goal is only to pass on the lessons I have learned and hopefully improve life for another who perhaps just needs to hear it from someone who has actually been down the road.

 

[suebear]

The statistics which I quoted in my earlier post were taken from a very informal and voluntary " fact sheet" which with the aid of my pharmacist was distributed to and completed by 205 individuals age 18 and over ,who were being treated with medication for various epileptic / seizure disorders .
I personally am not a medical professional in any respect . I am simply a man who has learned the hard way , how to deal with being epileptic. looking back now I see that my personal sense of pride kept me from accepting that I had a handicap which was going to have a marked impact on many of the day to day activities of my life.
It took me a long time to overcome the stigma attached to epilepsy and come to grips with the fact that I may have to accept some help and advice from others , at least from time to time.
I have personally grown a great deal over these past few years and now I find it much easier to accept the fact that I have a few limitations. I know i will never pilot an airplane for instance ,and I know the roads are a much safer place with me in the passenger seat , rather than behind the wheel.

If I had , had the benfefit of knowing several years ago that I could be seizure free and lead a relatively un-restricted life simply by stringently following a routine as far as taking my medication , how much improved my life would have been. I have had the opportunity on several ocasssions in the past year and a half , to meet with some of the people who volunteered to fill out my study questionaires and have hopefully made a positive impression on at least1 or 2 . my goal is only to pass on the lessons I have learned and hopefully improve life for another who perhaps just needs to hear it from someone who has actually been down the road.

Can you provide a URL as I'd like to see what other statistics they have or was this an actual black and white sheet you were given from your pharmacy? I get those types of sheets every once in awhile. Appreciate your feedback.

 

[suebear]

Oh and one more thought, the type of surgery that I have just had is a DBS for Epilepsy which is extremely rare as it is investigative still. The FDA has not approved it nor is there any intention of this surgery being anywhere near approval from the FDA being approved by the FDA because of the risks involved.

The DBS surgery originally came out for Parkinson's Disease because it has helped persons who have that disorder tremendously. However, it was discovered by accident persons with other various types of neurological disorders can be helped by the DBS specifically Epilepsy and there are a few others but I am unaware of the specifics.

At any rate, the patient must meet specific criteria before even being considered a candidate in the first phase. In my case, I passed through the first phase because I had two surgeries, the second phase was due to the amount of medications I had taken over the years. The third phase was more complicated as it required a mix of seizure activity, seizure location, and seizure type; I passed all three without any issue during the final testing.

During my week long stay in the hospital, I was removed from medication so the team could see my seizure activity again and draw a map of seizure location and place the DBS lead in my head including make the choice program settings. The neurosurgeon who did this procedure is well trained on this matter and is the ONLY one of very few surgeons in the area who are aware of how to program this type of technology because it is considered under investigation.

Because the neurosurgeon performs DBS on PD patients he had the ability to move forward with his training since he also works with epileptic patients. The hospital where he works at is an educational, research, and development based hospital in the metropolitan area. I was in the best possible medical care during this time and would proudly recommend this doctor to anyone who wants his information.

You can down play surgery all you wish however I find in my situation it was a required necessity and I am doing better because of it. Please do not talk down about an issue that is extremely important to me or others that I am bringing the message forward to and providing information to so they are informed.

 

[Belinda1961]

I had RTL in Montreal January of 1982 and my scar tissue was removed on my RTL.
They thought my seizures were only on my right side and they were wrong.
After my surgery my seizures decreased some.

My husband had surgery in 1972 a white mass was removed he never had another seizure.
(a)abort (b)fail (c)retry (d)throw computer against wall.

southern&proud of it.

Belinda

 

[suebear]

I'm finding that there are high technical differences between the United States and other countries which include a long list of variables. I can tell you each time that I have gone into the University of Nebraska Medical Center to see my epilepsy specialist, my family doctor, or to see another doctor I have noticed there are persons who are visiting from across the globe either wheeled through the hospital or given a tour of the hospital areas as they have family members coming in for surgery. This is a highly recommended facility both domestic and international.

I am quite proud of having the surgery completed at UNMC and would complete it again without hesitation. I'm actually writing a blog on the issue to discuss the issue including having more detailed conversations with another group of persons who are considering or have had the DBS surgery so I can explain my experiences.

 

[vagellie007]

tegretol withdrawls

been on tegretol for 25 years and my doctor took me off 2 days, having bad withdrawl symptems. any help wiuld be great, how long does this last a? can any type of med help??

 

[bruce]

un-predictable side effects of surgery

After finaly waking from a year long coma, within 10 days I experienced what could only be described as a COMPLETE MENTAL BREAKDOWN.for 24 hours preceeding this event i began having FLASHBACKS of traumatic events which i had experienced from early childhood right through to adulthood. Some of these events where of a very personal { sexual interference } type, while others where of accidents and mishaps which had occured at different times in my life.
It was like watching a home movie of every bad memory of my life , played back at high speed .I had to undergo months of psychotherapy because of this event and have regained control over these haunting memories.
I have learned that your brain { as a protection mechanism } has the ability to file away traumatic events so well that, your concious being is no longer aware of them.
For me perhaps the combination of the surgery and the coma was enough to unlock those files which had been buried deep in my sub-concious.
Along with my anti seizure medication I am now on a lifetime regimen of anti-psychotic medication as well.
What I would like to know is . Is this result unique to me? Or has anyone else experienced a similar side effect after under-going brain surgery?

 

[bruce]

I appologize in advance for my lack of proper punctuation and sometimes poor grammer .
Lately I find im having difficulty recalling words and their spelling . I also am able to type with only the index finger of my left hand.
My right hand no longer communicates with my left hand . If i try to use my entire left hand it goes into a very painful cramp.
Not only does this effect my typing skills , but i can no longer play the piano , which is something i used to love doing.