Do I really need surgery or should I put up with meds?

[ranet_jeno]

They are secondary

 

[qtowngirl]

Specifics behind the seizures and basis for operation such as a lesion or hippocampal sclerosis, etc.?

 

[Cint]

So what happened to you? did the seizures just come back worse? Do you have speech and memory problems now?

Yes & yes. Before surgery I had CP seizures, after surgery, I had CP's with secondary TC's. I have bad aphasia and short term memory loss.

 

[qtowngirl]

Nick, the reasons I'm asking these questions... whether your pathology is normal, location of the lesion if there is one, reasons for surgery... all of it... can make a lot of difference. Close to 70 per cent of us with temporal lobe e have some level of mesial sclerosis... do you know if you have? Have you had a consult with a surgeon or at least your neuro to talk about long-term results yet? I really hope you've taken a look at the bigger picture, as Cint knows all too well, only being 'free' for a year just isn't worth it.

from PubMed/American Epilepsy Society (part of a research article):

Temporal Lobectomy: Long-term Seizure Outcome, Late Recurrence, and Risks for Seizure Recurrence

"Little information is available relevant to long-term seizure outcome after anterior temporal lobectomy, particularly at extended postoperative periods. The aim of this study was an in-depth examination of patterns of longitudinal outcome and potential risk factors for seizure recurrence after lobectomy, using a large patient sample with long follow-up. Included were 325 patients who underwent anterior temporal lobectomy between 1978 and 1998. Retrospective data were analyzed by using survival analysis and multivariate regression with Cox proportional hazard models. The probability of complete seizure freedom at 2 years after surgery was 55.3%; at 5 years, 47.7%; and at 10 postoperative years, it was 41%. Patients with discrete preoperative abnormalities (i.e., lesions and hippocampal sclerosis) had a significantly higher probability of seizure freedom than did patients without obvious abnormality."

"After adjustment for preoperative pathology, only the presence of preoperative secondarily generalized seizures had a significant association with recurrence."

"Seizure-free outcomes (defined as no seizures, only persistent auras, or seizures limited to the immediate postoperative period), for the group as a whole, occurred in 61% of patients at 1 year, 55% at 2 years, 48% at 5 years, and 41% at 10 years. The authors point out a sobering finding from their analysis: even for those patients who have achieved seizure freedom at the 2-year postoperative time point, one fourth of these individuals will have experienced seizure recurrence by the 10-year mark. The probability of remaining free from seizures on the tenth postoperative anniversary was highest in those patients whose underlying pathology consisted of a foreign-tissue lesion or hippocampal sclerosis, about 63% and 50%, respectively. In contrast, patients with normal pathology or those classified as having other types of pathology confined to the temporal lobe (such as dysplasia) had a poor long-term prognosis, with only about 13% and 19% seizure free at 10 years. Of the other factors previously mentioned, only the presence of preoperative secondarily generalized seizures had a significant association with postoperative seizure recurrence."

"The results of this study indicate that the lack of an obvious abnormality or the presence of diffuse pathology, and preoperative secondarily generalized seizures are risk factors for recurrence after surgery. Late recurrence after initial seizure freedom is not a rare event."

Though this wasn't done recently, it was done over a 20-year period which makes it one of a kind. Surgery is not a 'cure.' There isn't one. Surgery is to give those who are suffering substantially a better quality of life. I know this is your decision and you need to do whatever you feel is right for you, but please please know how big the decision is, and how high the risk is that the seizures will come back.
I'm just not sure that what you're expecting/reaching for actually exists.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1176327/

 

[alivenwell]

Keep in mind, that you have one brain. They cannot replace it with another brain like they can do to other body organs.

I'm also on Lamictal; and it has provided me with complete seizure control. If that is what you can get now, why opt for surgery?

It's understandable that medications are excessively expensive. Personally, I will only take brand name Lamictal. Compare that to the expense of a surgery that could be risky.

 

[ranet_jeno]

"Little information is available relevant to long-term seizure outcome after anterior temporal lobectomy, particularly at extended postoperative periods.

That is definitely one of the obstacles. We ruled out the sclerosis and have not accurately pinpointed the onset in the left temporal lobe as of yet... We still need to do more testing however...

BUT even if we cannot find exactly where it is, and cut something out of my brain, and it does not work at stopping the seizures, it will not be the end of life.. it will be a bummer... but I will get over it. JUST as long as my brain function does not deteriorate to the point where I cannot live the life I currently live in the city and on my own.

 

[CQ:)]

BUT even if we cannot find exactly where it is, and cut something out of my brain, and it does not work at stopping the seizures, it will not be the end of life.. it will be a bummer... but I will get over it. JUST as long as my brain function does not deteriorate to the point where I cannot live the life I currently live in the city and on my own.

Nick
If you don't know where the seizure activity starts does this mean that the MRIs didn't pick anything up eg - scarring, tumor?
The damage to your brain which is causing the seizures may well be to deep in the brain or spread on to both side of the brain, making it more difficult for you to have surgery.

The whole point of all these tests is for the specialists to pin point where the seizure activity is & to make sure it is safe for you to have the surgery. The neurosurgeons aren't going to cut into your brain until they are absolutely confident that they know where the damage is & there is a better chance for you to have more seizure control.

As we keep saying over & over if you do end up being able to have the surgery there is a chance that the surgery will not completely stop your seizures & the neurosurgeons may not even be able to remove all the damage that is causing the seizures. When I had my surgery the neurosurgeons were confident they got all the scarring that was causing my seizures but I think that if the seizures are caused by a cyst or tumor there is a chance all the cyst or tumor will not be able to be removed.

 

[epileric]

That is definitely one of the obstacles. We ruled out the sclerosis and have not accurately pinpointed the onset in the left temporal lobe as of yet... We still need to do more testing however...

BUT even if we cannot find exactly where it is, and cut something out of my brain, and it does not work at stopping the seizures, it will not be the end of life.. it will be a bummer... but I will get over it. JUST as long as my brain function does not deteriorate to the point where I cannot live the life I currently live in the city and on my own.

I've said this before & I'll say it again- you expect to have a random part of your brain cut off (it is random if they don't know where the seizures are originating) and you expect to live the same quality of life you're living now????

Are you sure you're thinking this through logically?

 

[ranet_jeno]

I've said this before & I'll say it again- you expect to have a random part of your brain cut off (it is random if they don't know where the seizures are originating) and you expect to live the same quality of life you're living now????

precisely. Have you not read into ANY of the merits of surgery? There are a LOT of people who have had the lobectomy done and have not had cognitive impairments. It is a lot more common than you might think actually. And I think your getting a little dramatic. a "random" part of my brain? ya, the docs are just going to wing it and start slicing. NO there are more tests. I have done VEEG MRI and PET-CT. I have appointments for neuropsych and I might do subdural eeg, SPECT, then WADA. than a large conference of all of the doctors come to decide.

 

[epileric]

precisely. Have you not read into ANY of the merits of surgery? There are a LOT of people who have had the lobectomy done and have not had cognitive impairments. It is a lot more common than you might think actually.

So you've checked the statistics of successful operations & had words like "successful" defined when doing so?

And I think your getting a little dramatic. a "random" part of my brain? ya, the docs are just going to wing it and start slicing. NO there are more tests. I have done VEEG MRI and PET-CT. I have appointments for neuropsych and I might do subdural eeg, SPECT, then WADA. than a large conference of all of the doctors come to decide.

Actually I'm not getting dramatic. You said you were approved for surgery and now you're saying they don't know the source of your seizures. I'm only going by what you're saying.

Also, I had a neurologist tell me what part of the brain he wanted to slice off but in the same breath told me they had no clue where the seizures originated so I don't feel that it is an unjustified concern. Something they used to do was cut the corpus callosum regardless of where your seizures originated so sometimes it's just best to question rather than assume things.

 

[ranet_jeno]

Here was another forum I was on talking about this very same thing... theres only like 3 responses, but a couple of them are positive and supportive......... They know that I am twisting things with the meds with the docs as well....
ttp://my.epilepsy.com/discussion/997614

 

[LMReggcellent]

precisely. Have you not read into ANY of the merits of surgery? There are a LOT of people who have had the lobectomy done and have not had cognitive impairments. It is a lot more common than you might think actually.

I wonder if you know there are a LOT of people who have had the lobectomy done and HAVE had cognitive impairments. I'm glad you're happy at another forum, too. It's only my opinion but I think that sixty-something responses is probably more reliable than three. Just sayin.

 

[epileric]

Turning the argument to what other people think is actually a great way to change topics. It also makes no sense to base your health on others opinions. Asking for information & confirming that information is a different story.

I think the main issue at hand should be whether the doctors know where your seizures originate and what the real statistics are. Stats like how many of that operation have been performed, how long the patients were monitored afterwards, what type of recovery they had, not just successful/unsuccessful but how they were effected (if at all) & what those percentages were.

Also remember that the more people in the study the more accurate it is likely to be and anything under 30 people really isn't even worth considering.

 

[ranet_jeno]

Turning the argument to what other people think is actually a great way to change topics. It also makes no sense to base your health on others opinions. Asking for information & confirming that information is a different story.
.

Well I just think that this persons response is fairly rational. It is not threatening with words of doom and intimidation. It simply says, you want to change your situation, and should go for it:

"Obviously you're not happy with your current situation. If you were, you wouldn't be here.

Over the top? Only YOU can make that determination as it involves a lot more than the medical aspect of the situation. The medical community refers to it as "quality of life". I'm not quite sure what you mean by "bending the truth." The doctor will make a medical determination based on the FACTS determined during testing, give you the percentages, and you have to apply that to your everyday life.

I do want to emphasize that it's a bad idea to go into the process assuming surgery will eliminate having to take medication. You can have an unsuccessful surgery and have to continue with medication. You can also have what the doctor would term a successful surgery and still have to continue with the meds. Hopefully it will be less medication, and whether you call that a "success" or "failure" you have to be ready for it.

Kevin"

Epileric, You are correct that it is all going to depend. there are many variables out there, but I just wanted to throw my rationale out there and get a response in this forum, negative or positive to it... so far the responses have been negative and my rational one more time is, I have an inconveinience that I am trying to eliminate and am willing to take some risks. I dont mind if I have the surgery and I continue to have seizures. the lamictal does the job pretty well so i can always hop back on that, or up the dosage if the seizures get worse. Only thing I am afraid of is negative cognitive effects. And that is why more testing and localizing is key.

I have a question for anyone out there.... what percentage of people with Left temporal lobe epilepsy are candidates for surgery? like 10? 40? 80?

Thanks,

 

[CQ:)]

Nick,

This may come across as quite hush but if you are going to come onto a public forum & post that you are lying to the epitiologist in order to have surgery then of course you will get more negative responses then positive.

As I already mentioned I do not regret having surgery but unlike me not everyone has a successful outcome when they have surgery. I would suggest surgery to anyone if they were actually a good candidate (eg- their seizures are affecting their lives, meds aren't working) but I also say doing as much research as possible, listening to other peoples advice is very important.

I don't know what the percentage of people with LTE are candidates because epilepsy affects us all different & there are some people with Temporal Lobe Epilepsy who can't have surgery.

 

[epileric]

Well I just think that this persons response is fairly rational. It is not threatening with words of doom and intimidation. It simply says, you want to change your situation, and should go for it:

I'm sorry "doom & gloom" bother you but sometimes the facts are doomy & gloomy. You asked for opinions & you got them.

Over the top? Only YOU can make that determination as it involves a lot more than the medical aspect of the situation. The medical community refers to it as "quality of life". I'm not quite sure what you mean by "bending the truth." The doctor will make a medical determination based on the FACTS determined during testing, give you the percentages, and you have to apply that to your everyday life.

I'm not sure if you're quoting someone here or it is your opinions but bending the truth is easy when you know how to make numbers misrepresent the facts. There's an old joke about this new drug that was supposed to help seizures. 33.3% of those tested reacted favourably & had less seizures, 33.3% of those tested got worse & had more seizures & the third mouse got away. Like I said before, get as many facts as you can to determine the validity of the statistics. Also realize that many neurologists feel their patients should have operations so they tend to try to make it look better than it is. I've been asked by 3 doctors if I wanted one & all were too persistent without giving me good medical knowledge or stats for me to feel comfortable.

Epileric, You are correct that it is all going to depend. there are many variables out there, but I just wanted to throw my rationale out there and get a response in this forum, negative or positive to it... so far the responses have been negative and my rational one more time is, I have an inconveinience that I am trying to eliminate and am willing to take some risks. I dont mind if I have the surgery and I continue to have seizures. the lamictal does the job pretty well so i can always hop back on that, or up the dosage if the seizures get worse. Only thing I am afraid of is negative cognitive effects. And that is why more testing and localizing is key.

Anyone with seizures & even the neurologists will tell you that if you mess with your neurology by having an operation you may not react the same way to meds that you have previously. You may but you cannot depend on it thinking that because it worked before it will work again.

I have a question for anyone out there.... what percentage of people with Left temporal lobe epilepsy are candidates for surgery? like 10? 40? 80?

That is what I meant when I said you should confirm what people tell you. Check out medical or statistic sites for those numbers. They're more likely to be accurate than anecdotes.
Try this site for starters http://summaries.cochrane.org/

 

[qtowngirl]

Hi everyone ! first time here!

Anyways, I have been thinking about a temporal lobectomy and the tests say I am a candidate...

But heres the thing... I take a fairly low dose of lamictal (600mg/day) and it COMPLETELY controls my seizures.... HOWEVER I have read that this surgery has been pretty successful so I am thinking, why not just stop the seizures from where they start and take NO meds?!

BUT if I tell my epileptologist that my seizures are completely controlled with the lamictal, than I dont think she would have me continue with the surgery even though i want it... so I sort of have to lie to her about how often I have seizures and make it sound worse than it is to get her on board with the surgery decision!!!

Bottom line: am I a candidate for surgery even though my seizures are controlled with AED's?

Why did you start this thread? Personally I think it has gone on long enough. You were obviously not interested in what others had to say anyway, even though some of them have real experience with exactly what you're asking about. Can I politely ask that you stop wasting all of our time with these responses?
When one asks for advice about making a life changing decision (which you obviously DON'T GET that it is), it's because they truly care about what people have to say. I think you're just stringing us along and saying the same farce over and over and it's starting to really show disrespect for what epilepsy actually is and the crucial decisions it forces us to face. You talk about this surgery like it's water off your back. I have been off of here ONE DAY and cannot believe what I have just read.
"It will be a bummer" ...?? If this doesn't work out for you it's not going to feel like losing a baseball game Nick. And HOW THE HELL DO YOU KNOW you'll just be able to 'hop back' on the lamictal? Who said? This is a disease where things are constantly changing... seizures, meds, dosages, circumstances, and it's not one that the patient gets to control as they see fit. Wake up!! When you say to someone like Epileric "Have you not read into ANY of the merits of surgery?" I think you need to step back and take a look at where you are friend. He doesn't have the number of posts he does and the information he does for no reason. It's called educated.
And if you don't want to hear what educated people have to say then pls find another forum, this obviously isn't the one for you. We all respect each other here and what we've been through.

 

[Nakamova]

Okay, I'm going to put my moderator hat on here:

Nick: You are welcome to ask questions about other folks' experience with surgery, meds, doctors, etc. I think the majority of member responses indicate that while everyone understands the wish to find a way to stop their seizures once and for all, brain surgery may or may not be the answer. Regardless of the success rate for any given individual, it's important to consider brain surgery with due seriousness, to research the pros and cons with due diligence.

Everyone else: I think Nick has made his inclinations clear. Sometimes we ask questions already knowing the answer we want to hear. That doesn't make it wrong to ask the question in the first place, even if the end result is reinforcing the ideas and stances we held before asking.

This has been an interesting thread, but I think it has run its course. This thread is now locked. Anyone with questions should feel free to PM me.