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Old 12-15-2014, 07:10 AM
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Premature surgery?


Hi,
Firstly alittle background....

I first had an 'episode' many years ago, it was when I was in bed, unwell with a cold/flu..
I didn't know what it was, so put it down to being well, and forgot about it.
Over the next few years, these 'episodes' became more and more frequent, so went to my gp, who referred me to a Neurologist, and after afew scans, was diagnosed with partial seizures of the temperol Lobe (according to my last report: refractory epilepsy secondary to the right hippocampal lesion)

The first mediation to be put on was tegretol carbamazepine. I stayed on this for about 1 year, trying different doses, but unfortunately had little effect on controlling my seizures.

Then came the transitional period over to a second drug, lamotrigine, which I'm currently on, dosage of 200mg morning and 200mg at night.

Unfortunately these don't seem to be controlling my seizures neither, I'm probably having slightly LESS seizures than before, BUT the intensity of the seizures are greater... (this has been the trend since I first had a seizure many years ago, starting very mild to were I am now, which is FAR more regular, and FAR more intense.
It feels like a downward spiral, and will only get worse as the years go by.

So after my last visit to my Neurologist, he mentioned the idea of looking into the potential going down the surgery.
I've since had 2 scans, I believe it's to establish if I'm a potential candidate for the surgery..

1)mri scan of the head
2)ambulatory EEG monitoring

I've now got a follow up appointment with my Neurologist is February 2015.

My question is, after speaking to my gp, various other people and alittle research online including this forum that I should seriously think about going down this route.
It seems like alot of people with epilepsy are on various drugs at the same time, and different doses to try and control their seizure, which is something I've not done...
Is my Neurologist being alittle premature with considering going down the surgery route?

The one certainty I have is that I CAN'T live my life as I am, and how my seizures are controlling all aspects of life, hence why it's something I will/am seriously considering, but I don't want to make a rash decision that I may regret later.

In the end it will obviously be my decision to have it done, but my Neurologist has said after trying and being unsuccessful with 2 different meds, it's VERY unlikely any others would have any effect....

Any advice?
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Old 12-15-2014, 08:57 AM
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Hello. Have the docs done a blood level on your lamictal? 400 a day is not nessarily a very high dose and you may not even be in the therapeutic range. I went from being poorly controlled at 400 (200 twice a day) to fully controlled (for 6 months now) when I went to 650 per day. Because I had side-effects when I tried to increase past 400 taking only twice a day I am now taking 150 at 6AM, noon and 6PM, and 200 at bedtime. I would suggest trying that route before considering other meds or surgery. Your doc has probably not considered 4 time a day dosing, but tell him or her that you want a blood level done, you want to increase your dose if you are still safely within the therapeutic range, and you want to try four times a day instead of two. Don't let them talk you into surgery or other meds until you have tried that.
If you want a little more info on my own experience with this read page 12 of the thread I've linked to here. (You can read the whole thing if you want to know my whole VNS trip, but page 12 has the part about lamictal).
Let us know how things go.
Cheers!

http://www.coping-with-epilepsy.com/...3/index12.html
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Old 12-15-2014, 09:50 AM
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Hello Itr786,
I just went thru the whole resection surgery route, and I can't say enough good things about it. You are correct in that once you fail 2 drugs the statistics show that aside from surgery it is not likely that you will get control of the seizures.
Talk further with your epileptologist, find out about the testing and the timeline. I was hesitant at first, as you are, but after the 1-year journey it was definitely worth it.

Best of luck to you, whatever you decide...
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Old 12-15-2014, 10:15 AM
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I've been down the same road as all of the above, but with different outcomes. After trying 3 meds back in 1990, (there weren't that many meds available back then) and none controlling the complex partial seizures (I was having 4-5 a day), I went in and had a Left Temporal Lobectomy. I was seizure free for 14 months. When I started having seizures again, they came back with vengeance. They came back as complex partial with tonic clonic seizures, too. And not only were the seizures worse, so was my memory and the depression. All goes with Temporal Lobe Epilepsy. And with this surgery, they say one needs to be seizure-free for two years before they know for sure whether it is a success or not.

Check this out for more info:

http://www.epilepsy.com/learn/treati...ery-candidates

http://www.epilepsy.com/learn/treati...ypes-surgeries

And here is info on the Vagus Nerve Stimulator:

http://www.epilepsy.com/learn/treati...timulation-vns

I had the VNS implanted after the failed brain surgery, and it has been a blessing to me. There are some uncomfortable things initially, like shortness of breath and voice alterations, but one does get used to them over time. And it can be turned off if it doesn't work out. BRAIN surgery can NEVER be changed!! One needs to seriously consider it. Get several opinions from reputable epileptologists.
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Old 12-15-2014, 11:20 AM
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I am not considered a surgical candidate, but that aside: I went through 6 medications (alone or in various combinations) over the 4 1/2 years I have had seizures before arriving at the combination I am on now. I do not have complete control, but I am miles ahead of where I was before and I can generally carry on with my day after I do have a seizure.

Also, be sure to seek multiple opinions, with at least one of those opinions being from an epileptologist at a well-respected epileptology center.
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Old 12-15-2014, 11:36 AM
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Originally Posted by masterjen View Post:
Also, be sure to seek multiple opinions, with at least one of those opinions being from an epileptologist at a well-respected epileptology center.
That's what I just said.
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Old 12-15-2014, 12:51 PM
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With regards to getting someone else's opinion, would that be at the same hospital?..

How/who would you approach to get a second opinion? Other than seeing the Neurology once every 4-6 months, the only time there's community with the hospital is a letter with the date of my next appointment, and every so often a scan date.

So many positives with the NHS, but at times, it feels like it has just as many negatives
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Old 12-15-2014, 03:23 PM
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As others have said, once you fail two medications you are considered to have drug-resistant epilepsy, and at that point the chances of ever getting full control on medication becomes pretty small. And in addition, lesional temporal lobe epilepsy is one of the epilepsies most likely to be refractory, and it can be one of the easiest to treat surgically. Success rates are quite high in the right candidates. Because of this, neurologists are now referring people for surgery evaluation much sooner than they used to, and I think that is a good thing!

However, that does not mean that it is something to jump into quickly! Brain surgery is not reversible, and as Cint pointed out there are no guarantees. Generally the process of evaluation takes quite a while so that can give you time to consider all your options, do research and get a second opinion. You may not be able to get complete seizure control on medication, but you may be able to get your seizures to a level that you can live with - and that may be plenty good enough for you!

We are currently at the beginning of this path with my daughter, and it will be a while before we really know if she is a good candidate, and even longer before we can figure out if this is what we want.

Best of luck to you!
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Old 12-15-2014, 04:50 PM
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Sorry to hear about your daughter... I'm a grown man and find it difficult to comes to terms with it, can't imagine what it must be like for a child, and their parents 😢

Something I did forget to mention was that the current hospital doctor I'm seeing is an epilepsy specialist, who I was referred to by my original Neurologist who I'd been seeing up until about 6 months ago, but he'd referred me to this specialist, So technically I have had 2 specialists opinions at the hospital.

I've just read over the report he wrote after my last visit. He wrote,

"The chances of further drugs curing him of the epilepsy here is small and I would suggest less than 5%".

With regards to the surgery..., "There would be a 70-80% chance of being seizure free after being operated on".

I'll play it by ear for now, see how things pan out with the results from my scans etc, which I'll find out in my next visit to see him in February, I'll will what he suggests and take it from there.
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Old 12-15-2014, 05:04 PM
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Obviously a tough decision, but I would try at least one more med before considering surgery, perhaps something like Keppra that works differently than the other two meds.

Some of the factors for evaluating and treating drug-resistant epilepsy are covered here:
http://www.uptodate.com/contents/eva...stant-epilepsy
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Old 12-15-2014, 05:15 PM
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Originally Posted by Nakamova View Post:
Obviously a tough decision, but I would try at least one more med before considering surgery, perhaps something like Keppra that works differently than the other two meds.

Some of the factors for evaluating and treating drug-resistant epilepsy are covered here:
http://www.uptodate.com/contents/eva...stant-epilepsy
That is a great article! After Annika was declared drug-resistant I read all the way through it (as well as some of their other information) and I found it invaluable.
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Old 12-15-2014, 06:20 PM
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Surgery is a hard decision so just make sure you trust your doctor and make sure you have weighed all your options.
I was diagnosed last December and just scheduled surgery for Mar 23, 2015.
I started seeing a neurologist and then asked for a referral to an epileptologist.
I am lucky and happen to live in a city with a Level 4 epilepsy center.
After talking to the epileptologist and understanding the results of the testing, I felt comfortable with the decision, and believe me, I was completely against having surgery until I understood all the variables and realized that I am one of the lucky ones who is actually a candidate for surgery.

I would suggest finding an epileptologist in your area.
Good luck with everything!

KnightsGirl
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Old 12-16-2014, 09:52 AM
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Originally Posted by Nakamova View Post:
Obviously a tough decision, but I would try at least one more med before considering surgery, perhaps something like Keppra that works differently than the other two meds.

Some of the factors for evaluating and treating drug-resistant epilepsy are covered here:
http://www.uptodate.com/contents/eva...stant-epilepsy
But also beware of Keppra, as it is known as Kepprage because the side effects are Rage, Anxiety, etc. for some.

Originally Posted by KnightsGirl View Post:
Surgery is a hard decision so just make sure you trust your doctor and make sure you have weighed all your options.
I was diagnosed last December and just scheduled surgery for Mar 23, 2015.
I started seeing a neurologist and then asked for a referral to an epileptologist.
I am lucky and happen to live in a city with a Level 4 epilepsy center.
After talking to the epileptologist and understanding the results of the testing, I felt comfortable with the decision, and believe me, I was completely against having surgery until I understood all the variables and realized that I am one of the lucky ones who is actually a candidate for surgery.
Since you were just diagnosed last December, why in the world are you going for surgery so soon? Have you weighed all your options? How many meds have you tried?

I live in a big city with several Universities with a Level 4 epilepsy center. I went thru all the testing, even the WADA tests, and was a candidate for surgery, too, so went ahead with surgery. There is a HUGE difference between being a candidate for surgery and surgery itself.
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Last edited by Cint; 12-16-2014 at 09:55 AM. Reason: added words
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Old 12-16-2014, 10:12 AM
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Originally Posted by Cint View Post:
Since you were just diagnosed last December, why in the world are you going for surgery so soon? Have you weighed all your options? How many meds have you tried?

I live in a big city with several Universities with a Level 4 epilepsy center. I went thru all the testing, even the WADA tests, and was a candidate for surgery, too, so went ahead with surgery. There is a HUGE difference between being a candidate for surgery and surgery itself.
Cint - they are now referring people for surgery MUCH sooner than they did in the past, particularly for people with temporal lobe epilepsy. The consensus now is that you are drug-resistant after the failure of just 2 appropriate anti-epileptic drugs, and that after that the chance of ever getting full control with medication is just 5-10%. Given that the success rate of surgery is 70-80% in the right candidate, which is so much better than the chance of getting control with medication, epileptologists are moving forward with the evaluations much more quickly.

I am not advocating for surgery, just explaining! Again, my daughter is in a similar situation - she was diagnosed with epilepsy in Sept 2013, and we are in the midst of her pre-surgery evaluation now. This does not mean we are rushing into anything, just that we are getting the information that we need to see what our best options are.
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Old 12-16-2014, 11:20 AM
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Originally Posted by Kgartner View Post:
I am not advocating for surgery, just explaining! Again, my daughter is in a similar situation - she was diagnosed with epilepsy in Sept 2013, and we are in the midst of her pre-surgery evaluation now. This does not mean we are rushing into anything, just that we are getting the information that we need to see what our best options are.
I know the success rate for surgery is 70-80%! I just happen to be in that 20% that it did NOT work. It was the same 20+ years ago as it is now. That is nothing new! The only thing(s) that are new are the Internet, more drugs, newer procedures, the VNS + DBS.

Plus they suggested I have a 2nd brain surgery after I started having seizures, but after further investigation, the neurosurgeon said he would not go there because he was afraid I would end up like an end-stage Alzheimer patient, not being able to remember or speak. The damage was too deep in my hippocampus to operate on.

So I do know what I am talking about. Consider surgery very carefully.
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Old 12-16-2014, 11:53 AM
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Originally Posted by Cint View Post:
I know the success rate for surgery is 70-80%! I just happen to be in that 20% that it did NOT work. It was the same 20+ years ago as it is now. That is nothing new! The only thing(s) that are new are the Internet, more drugs, newer procedures, the VNS + DBS.

Plus they suggested I have a 2nd brain surgery after I started having seizures, but after further investigation, the neurosurgeon said he would not go there because he was afraid I would end up like an end-stage Alzheimer patient, not being able to remember or speak. The damage was too deep in my hippocampus to operate on.

So I do know what I am talking about. Consider surgery very carefully.
In no way was I suggesting that you don't know what you are talking about!! I completely value your input and experience; it is particularly helpful to anyone who might be getting an overly rosy picture from their neurologist.

I was just saying that while in the past a neurologist might have waited many years to suggest surgery, right now they are often recommending a surgery evaluation as soon as you fail two medications. So people are often looking at this option much sooner - sometimes even within 6-12 months of their initial epilepsy diagnosis. I know someone who actually had a temporal lobectomy just 8 months after her very first seizures.
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Old 12-16-2014, 03:04 PM
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It's surprising they'd consider someone for surgery after a 6-12 months!...

I've been playing around with the 2 meds I've been on for over 2 years now, and still think it's too soon.
Surely 12 months isn't enough time to judge whether meds would be able to control ones seizure!?...
I think you would needs to be fully convinced medication won't work before ever considering going down the surgery route.

As I said in the original post, even my gp sounded like it's a avenue I shouldn't think about going down.

It's heartbreak to hear after going through all that, your still suffering from it 😢

It's valuable and very necessary to hear from both sides of the spectrum, as putting rose tints on before making the decision isn't what people should do.
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Old 12-16-2014, 05:35 PM
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Cint,

I have Right Temporal Lobe Epilepsy.
I started taking Trileptal and had an allergic reaction after four weeks.
Then I started Keppra at 500mgs per dose and kept having to increase it to 1,500mgs per dose. Still not controlled.
So we added Vimpat at 50mg per dose and increased all the way to 200mgs per dose.
Still not controlled.
So I was switched to Topamax from Vimpat. Topamax was horrible for me.
Shortly after that I went to the EMU. I told them I wanted back on Vimpat.
I've been on max doses of Keppra and Vimpat since then and am not fully controlled.

I've been through extensive testing. When I go to the hospital in March they will place electrodes on my brain for one last test before surgery is performed. If they determine that surgery is not an option after they capture the results from a seizure, then I won't have surgery.

Epilepsy has really impacted my life and if there is a way to stop the seizures I am all for it. I know the surgery is not a 100% guarantee, but the doctors use the results from all of the pre-surgery tests to determine if someone is a good candidate or not.

KnightsGirl
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Old 12-16-2014, 06:20 PM
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Originally Posted by KnightsGirl View Post:
Cint,

I have Right Temporal Lobe Epilepsy.


I've been through extensive testing. When I go to the hospital in March they will place electrodes on my brain for one last test before surgery is performed. If they determine that surgery is not an option after they capture the results from a seizure, then I won't have surgery.

Epilepsy has really impacted my life and if there is a way to stop the seizures I am all for it. I know the surgery is not a 100% guarantee, but the doctors use the results from all of the pre-surgery tests to determine if someone is a good candidate or not.

KnightsGirl
Yes, epilepsy does impact one's life when seizures are not controlled. Been down that road off and on for over 30+ years. I went thru that extensive testing, too. The one where they placed the electrodes on the surface of my brain to see exactly where my seizures originated. After doing so, we all decided I was a candidate for surgery. But I was also felt like I was a guinea pig back then because now they know a whole lot more about the outcome of surgeries like I had because of patients like me. Plus the surgeons don't really know if it will or won't work. It's 50/50.

But you do have a better chance since yours is on the Right side.
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Old 12-16-2014, 06:30 PM
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Originally Posted by Itr786 View Post:
It's surprising they'd consider someone for surgery after a 6-12 months!...

I've been playing around with the 2 meds I've been on for over 2 years now, and still think it's too soon.
Surely 12 months isn't enough time to judge whether meds would be able to control ones seizure!?...
I think you would needs to be fully convinced medication won't work before ever considering going down the surgery route.

As I said in the original post, even my gp sounded like it's a avenue I shouldn't think about going down.

It's heartbreak to hear after going through all that, your still suffering from it 😢

It's valuable and very necessary to hear from both sides of the spectrum, as putting rose tints on before making the decision isn't what people should do.
IMO, the docs are pushing their agenda for $$. There are other options. If the seizures were due to a brain tumor, that's a different story. I have two friends who did have brain tumors removed and ended up having seizures. Seems so backwards to go in so soon. As said before, they won't know whether the surgery is successful for two years.
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