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

[nick714754]

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 anti-epileptic drug's?

[Cint]

Here is the bottom line on being a candidate for surgery from epilepsy.com:

WHO IS A CANDIDATE?

Epilepsy surgery is reserved for people whose seizures are not well controlled by seizure medicines. (This situation is sometimes called being "medically refractory.") In the past, epilepsy patients were referred for surgery only after they had taken medicine after medicine without success, often for 10 years or more. Today, however, the definition of medically refractory has changed, and surgery is being performed as early as 1 to 2 years after the diagnosis of epilepsy is first made.

In general, a person is considered to be a potential candidate for surgery if adequate trials of two first-line seizure medicines (ones that are commonly effective in controlling the type of seizures the person is experiencing) and one two-drug combination all have failed to control the seizures. A trial of a medication is considered adequate when it has been increased gradually to the maximum dosage that does not cause serious side effects and then is given for a long enough period. If the person has frequent seizures, any improvement will be obvious after a short time. If the seizures generally occur far apart, however, it may take months to determine whether the time between seizures is increasing.

At some epilepsy centers, patients are offered additional conventional or experimental medications before surgery is considered. But research suggests that each time a trial of medication fails to control a person's seizures, it becomes less likely that a different medicine or combination will be successful. Since uncontrolled seizures present serious physical risks and social and psychological consequences, the trend these days is to proceed with surgery much sooner than in years past if it seems appropriate for that person.

As my epileptologist has said, "if it ain't broke, don't fix it." There are serious effects of surgery that cannot be reversed: memory loss, aphasia, or the surgery may not leave you seizure free. Been there, done that.

[qtowngirl]

Wow Nick. I must be honest that I have a bit of an issue with your post. I hope you read the quote in Cint's response and read it well so that you understand how this really works. It's for those whose epilepsy is uncontrolled. For someone to go along lying to their epileptologist to get their lobectomy when it's unecessary... well... unethical to say the least. In most places many people who greatly require these surgeries have waited a very long time, sometimes three years or more, from start to finish with testing, appointments, hospitals, getting approved, and finally getting booked.
I am one of the people in Cint's article; on my third drug and done the combo, still having seizures, and am on a waiting list for testing. Not too much doubt however as my epileptologist is fairly positive but they still have to be sure and go through the process. The dragging on between appointments and the list being a couple years long is awful, takes up so much of a person's life. How you can lie to your specialist who thinks they're trying to make your life better, all under false pretenses, is unbelievable, and making it sound worse than it is to get her to do what you want? And you're considering taking up a spot on the surgery list when you don't even need it?
FFS if you're on a low dose of one drug and are completely controlled APPRECIATE HOW LUCKY YOU ARE AND ENJOY EVERY MINUTE OF IT!! Surgery is for those who need it. Sounds like you don't take this disease and all that comes with it very seriously. A real shame.

[nick714754]

Ok. I understand that you think it is shameful. But, I have also tried other medications that did not work... tegratol, keppra, dilantan.. to name a few. I still also have petit mal seizures but have not had a complex partial in a while...

does this change things or do you still believe it would be inappropriate to go on with surgery?

Thanks,

[Cint]

I was experiencing 3-4 complex partial seizures a day and had tried several meds that were available at the time. Nothing stopped the seizures. So I was sent to an epilepsy clinic and after months of testing, I had a left temporal lobectomy. For 14 months, I was seizure free. Then the seizures came back with vengeance. In addition to the complex partial seizures, I started having tonic clonic seizures, along with memory loss and depression. I understand that the surgery has improved since 1990 when I had it, but there are serious consequences to consider today.

In 1998, after many complex partial seizures and tonic clonic seizures, and trying 8 meds, I had the VNS surgery to help control my seizures, since the brain surgery failed. And there are consequences with this therapy, also. And I agree with qtowngirl, it is shameful for you to lie to your dr. about your seizures just so you can have brain surgery. It is VERY INAPPROPRIATE to go on with surgery, IMO. It may work, it may not. Plus it is for those whose seizures are uncontrolled, which from what you have said, your not in that classification. Please stop lying to your dr.

How I wish my seizures would have been controlled with just Lamictal. That would have been Heaven for me!!!!!!!!!!! Now I take a high dosage of Keppra + Topomax and have the VNS...........

[nick714754]

But what about the long term effects of the petit mals? it can have an effect on memory down the road.. (not to mention the tonic clonic seizures I have if I miss a dose or 2)... The long term effects of the anti-epileptic drug's are not good either.

I just think in the long run, surgery many be best..

If I am a perfect candidate for surgery, and can acheive seizure and medication freedom, dont you think I should consider it? please try to see it from my perspective guys and avoid using your own experiences.

I do appreciate your responses.

Thanks,

(Doctors are also pressured to keep costs down and avoid surgery, so there is bias. I work at BCBS so I know)

[epileric]

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?!

Putting aside the consequences that come with surgery, I've also seen documentaries & studies that claim a high success rate. First of all, remember the definition of success only refers to stopping the seizure and has nothing to do with how it effects ones quality of life. Secondly, remember that a lot of the statistics are skewed to make things look good. I saw a documentary that said 100% of their operations were successful. However, if you watch the details you'll see that they only followed the subjects for 6 months after the operation and like CinT said, her seizures came back after 14 months.

Also, the success rate is dependant on where in the brain the lesion is. I have a lesion on the hypothalamus of the brain. There have been so few lesions like mine that there are not enough statistics to determine if it would be a good idea for an operation.

I'm sure the statistics were skewed in other ways but realize that just because you read somewhere it's "successful" their definition of "successful" & yours may not be the same.

[epileric]

As far as the long term effects of your seizures is concerned, if they were not under control the effects would still be less than that of an operation. The effects of seizures on memory are long-term.

Yours are under control so isn't that a moot question?

[qtowngirl]

Epileric is right... what you read and what you think may be two different things. And it's key to be reading from the right sources as well. Where did you get this information? How much research have you done on temporal lobe epilepsy and the lobectomy so that you have everything you need to make the right decision? Tons I hope. Because if so you would know that the actual 'success' of these surgeries as far as what you're looking for (completely seizure-free) is only 60 per cent...
[I]Management Options
anti-epileptic drugs indicated for focal epilepsies. Early surgical intervention provides excellent chance of cure and subsequent normal life: ~60% become seizure free, 20% have reduced numbers of seizures, 10% show no benefit, and 10% have neurosurgical complications or get worse.[/I] -professionals.epilepsy.com I know the numbers vary a few per cent for the temporal lobectomy itself, but not much.
And like Cint (so sorry to hear), just because you start out great doesn't mean you'll stay that way. Yes the thought of surgery and possibility of a better life can feel exciting, but that's more so for those who have poor quality of life due to their amount/type of seizures. Doesn't sound like you at all from what you say. And considering the risk of surgery (brain surgery alone, nevermind that it has the ability to make your epilepsy worse), I can't fathom why you would want to do this.
I feel so sorry for your epileptologist, these people work very hard to make our lives better, and you're fooling them and wasting their time with lies.
Bottom line... if you're controlled and only on one drug this really shouldn't be a question.

[Cint]

But what about the long term effects of the petit mals? it can have an effect on memory down the road.. (not to mention the tonic clonic seizures I have if I miss a dose or 2)... The long term effects of the anti-epileptic drug's are not good either.

I just think in the long run, surgery many be best..

If I am a perfect candidate for surgery, and can acheive seizure and medication freedom, dont you think I should consider it? please try to see it from my perspective guys and avoid using your own experiences.

I'm not using my experience here. You can stop taking anti-epileptic drug's. You can't stop/reverse the effects of surgery. Plus, as Eric said, they don't tell you the whole truth, so you never know....... I have known other's who had a stroke during brain surgery, another ended up partially paralyzed, one died from a seizure during testing because the nurse didn't respond soon enough... these are things the doctors will not tell happen.

[qtowngirl]

I'm not using my experience here. You can stop taking anti-epileptic drug's. You can't stop/reverse the effects of surgery. Plus, as Eric said, they don't tell you the whole truth, so you never know....... I have known other's who had a stroke during brain surgery, another ended up partially paralyzed, one died from a seizure during testing because the nurse didn't respond soon enough... these are things the doctors will not tell happen.

OMG Cint, thank you for the (scary yet necessary) info. Even for someone like me who is uncontrolled on three meds and going for testing that causes some reconsideration.
Nick I think it's vital for us to talk about our own experiences, as well as of those we know. I have only been on this site since June and have learned so much, whether it's actual fact from articles, etc. or from reading and communicating with others about what they've gone through. I know you're new here but you'll hear it a lot... as epileptics most of us seem to know more about the disease than many in the medical community, and this is because we read and research and communicate on a constant basis.
In the end of course you have to do what's right for you but there are so many people on here with experiences from A to Z who can help guide and offer advice through their own experience and knowledge. That's what friends do, it's a good thing.

[nick714754]

Here are some side effects of the drug I am on:

Blurred or double vision; constipation; decreased coordination; diarrhea; dizziness; drowsiness; headache; nausea; painful menstrual periods; runny or stuffy nose; stomach upset or pain; tiredness; trouble sleeping; vomiting; weakness; weight loss.

I have experienced all of these.

So why not expell these effects? I have read so many success stories (especially with younger people like me - 26) about the surgery and cannot avoid the option of brain surgery...

Next time I see my epileptologist I am going to tell her that it is mainly petit mal and that the complex partials are gone because of the medication... Do you think she will still think of surgery as a viable option based on my arguement in this forum?

[epileric]

When you say you're getting "all of these" effects I'm assuming you mean the ones that have been italicized.

The thing about such side-effects is that they are not necessarily permanent. I've had all sorts of side-effects that my body has gotten used to. However once you get an operation it you are not getting rid of side-effects, you are exchanging side-effects for others that are permanent. You also have to consider that it might make things worse, that is why it is a last resort. Just the fact that you are so concerned with side-effects is a good reason not to have an operation.



As for what your neurologist will say, the only way to know for sure is to ask her.

[qtowngirl]

Just the fact that you are so concerned with side-effects is a good reason not to have an operation.

And such a good point about what happens due to surgery being permanent. It is actually a risk to lose most of your memory and have to start over, almost like being trained as a toddler. Can you imagine? So, so risky. Again, Epileric's point about how you feel about side effects? Enough said Nick.

[Cint]

Enough said Nick.

If you r-e-a-l-l-y think the surgery is what will work for you, then go for it. Just remember there is NO turning back.

[LMReggcellent]

I take offense to your posts, Nick, and I thank and agree with everyone else who has responded. You're lying to your doctor because you want to have brain surgery so you don't have to take another dose of medicine again? I won't tell you about my unsuccessful neurosurgery story here but I will wonder how you can be so certain this brain surgery will be 100% successful and leave you with no negative effects for the rest of your life. You don't like the current side effects you have - are you sure you can recover from the excision of your temporal lobe? Personally I don't think you should find out. That's all.

[CQ:)]

Nick,

I agree with everyone else as I think that it was totally wrong of you to lie to your neurologist so you can have surgery.

I question whether you have done all your research into brain surgery to find out what is actually involved in the surgery. If you had done all your research you would have realised that the surgery is not considered a cure & is best described as another treatment to help control your seizures & like any surgery there are risks involved with brain surgery.

I had brain surgery in March last year to remove the scarring my left front temporal lobe which was causing my seizures. I was given an 80% chance that the surgery would help control my seizures & so far I have been seizure free since the surgery but I know there is that chance that I may still have a seizure in the future.

You said the tests you had say you are a candidate, I was wondering which tests you have had.

I am not sure which country you are from but here in Australia if you want to consider brain surgery to help control your seizures it is a extremely long process.
I saw an epitiologist who went through my complete history of epilepsy, I then had to go through a series of tests, these tests included PET Scan, SPECT scan, MRI, 1 week stay in hospital for Video EEG monitoring, assessments from psychiatrist & tests/ assessment from neuropsychologist. After I had my tests there was a panel of all the different specialists who put together all their information on me to decide whether I was a candidate for surgery. They had all agreed that I was a good candidate for the surgery but if just one specialist had said no then I wouldn't have been able to have surgery.

I think you should consider yourself very lucky to be on a low dosage of medication & only have petimals (which I assume you mean as auras or simple partials). There are quite a few people who aren't as lucky as you & have to take high dosages of medication which still doesn't control their seizures. For some people with epilepsy, surgery is not even an option.

It does take time for your brain to heal after surgery so recovery can take time. I took 3 months of from my Voluntary work after I had surgery & when I did go back to voluntary work I started of with doing less hours then gradually increasing my hours as I felt up to it.
For the 1st 12 months after my surgery I have had to go back to the epilepsy clinic at the hospital every 3 months to see the neurologist & neuropsychologist. After March it will just be 2 * 6 month visits. After I reach my 2 year anniversary I can either go back to my own neurologist or keep going to the clinic but it would be every 12 months.
I have a neurpsychologist who has been there to support me & my family both before & after surgery, if I have any questions or worries at all I just have to email my neuropsych & she will email straight back.

Even if you did have the surgery there is still a good chance you may be on medication after the surgery but of course that would be up to the epitiologist to decide if they wanted to keep you on medication.
In my case I currently take 2 Anti Epilepsy Meds but have already been told I'll most likely have to take medication for the rest of my life but eventually it will only be 1 Anti Epilepsy Drug & a much lower doseage than what I am on now.
I don't think anyone likes taking medication & we all have side effects but I don't mind that I have to stay on medication for the rest of my life if it means I have a much less chance of having more seizures in the future.

I think you really should listen to the opinions of other posters, especially from the people who have had the surgery. Afterall who better to give you good advice on brain surgery then the people who have had it.

[CQ:)]

You can't stop/reverse the effects of surgery. Plus, as Eric said, they don't tell you the whole truth, so you never know....... I have known other's who had a stroke during brain surgery, another ended up partially paralyzed, one died from a seizure during testing because the nurse didn't respond soon enough... these are things the doctors will not tell happen.

As Cint has already said there are a lot of risks involved with brain surgery & I think the risks involved are different based on what side of your brain they remove.

The 1st time I met the epitiologist to discuss surgery he told me straight up what risks were involved with the surgery. He said because the scarring was on my left side I could have issues with my speech, memory & there was also a small chance (something like 1 in 1000) that I could have a stroke.
I still chose to have the surgery even though I knew what risks there were.

I also had the epitiologists, surgeon & neuropsychologist all tell me that they do not like to say brain surgery will cure seizures but it wiould hopefully help control my seizures better. I am glad that the specialists did tell me what risks involved as it made me prepare for the surgery better.

I went into the surgery just hoping that it would help control my auras & refused to believe it would cure my epilepsy. I feel if I went into the surgery thinking I'd never had a seizure again & then I did have a seizure I'm sure I'd have been pretty pissed off.

These are some of the risks involved with Brain Surgery, found on http://www.nlm.nih.gov/medlineplus/e...cle/003018.htm

Risks for any anesthesia are:
Reactions to medications
Problems breathing

Possible risks of brain surgery are:
Surgery on any one area may cause problems with speech, memory, muscle weakness, balance, vision, coordination, and other functions. These problems may last a short while or they may not go away.
Blood clot or bleeding in the brain
Seizures
Stroke
Coma
Infection in the brain, in the wound, or in the skull
Brain swelling

[qtowngirl]

Good point CQ about being on the meds after, I remember I was told that as well. They said I would likely be on one the rest of my life but it would remain at a low dose as long as I was seizure-free. I can't imagine the hell of the opposite outcome... getting brave enough to have surgery, actually doing it, staying on meds as well, just to start having them again anyway. I would be pretty pissed off as well, and devastated and many other terrible things. Fingers crossed for you that that never happens!!

Nick that's a very good point to keep in mind as one of the main things you're looking for here is to be free of meds... a good portion of people are kept on them anyway, even at a low dose. And with the risk that the seizures could come back, or get worse, it may be a good idea to dig deep, do the right research, and ask yourself what you really could make better.

[Cint]

Good point CQ about being on the meds after, I remember I was told that as well. They said I would likely be on one the rest of my life but it would remain at a low dose as long as I was seizure-free. I can't imagine the hell of the opposite outcome... getting brave enough to have surgery, actually doing it, staying on meds as well, just to start having them again anyway. I would be pretty pissed off as well, and devastated and many other terrible things. Fingers crossed for you that that never happens!!

That is what happened to me. I was/still am P/O'd about the outcome of my left temporal lobectomy. As I said before, my seizures came back with vengeance 14 months AFTER my lobectomy. I take the max dosage of Keppra now and a lower dosage of Topomax plus have the VNS to control my seizures............. Plus meds for the depression and other issues....... memory loss, side effects of meds, diabetes from a medication for depression, the list goes on and on and on..........