Thoughts about surgery

kirsten

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I can only start this post with a sigh, so here it is:

*sigh*

Last week I reported nine days seizure free and two/three seizures in three weeks. Thursday I had a TC which wrecked everything and I haven't gotten better since. Yesterday I had my blood levels done for my Phenytoin and they are still too low despite the dosage increase. My doctor has increased my dosage of Phenytoin but she said that if my levels don't rise into therapeutic range during the lowest trough by next month, she's sending me to a neurosurgeon straight away. I was waiting till Jan to do VNS when I could get coverage for it but she says we have to stop the TCs, so I guess the way it looks is that she's recommending the surgeries my medical insurance does cover because she thinks it's better to treat the seizures now--temporal lobectomy deep brain stimulation.

I was feeling pretty relaxed about having a whole six months to NOT think about surgery. I was also feeling relaxed about the choice of VNS because it's such a noninvasive procedure. I can already feel my heels digging into the ground about this issue. I just do not want brain surgery. I was referred to a surgeon before to find out if I was viable for a lobectomy, which I am, and then I ran away because I was scared. I did the inpatient EEG again about six years ago when my epilepsy doctor recommended it. (second surgery recommendation I received. Today's recommendation is the fourth recommendation for surgery I've been given by a doctor) Then I ran away again. So now I'm thinking I'm going to do the same thing.

I'm scared of these things: I don't want to lose my capacity to write and my love for literature. My life is meaningless without that stuff. I don't want to lose any more words.
And I don't want to turn into a carrot.
And I'm also scared of this undefinable thing that doesn't have a shape or a definition. Actually, that's the biggest fear of the lot.

And, by the way, brain surgery is just so...melodramatic. So extreme. The risks!

What danger does having TCs and partials weekly actually pose?

I'll admit that my quality of life suffers severely, but surgery can take away my quality of life permanently whereas medication can be chopped and changed. I don't know what I'm scared of. I just know that I'm scared. And I've read all the data, so information is not going to take that fear away. When the option isn't imminent, I do want surgery. But when it draws in closer, I don't want it.

Here is the neurosurgeon my doc is sending me to. He makes you feel safe, right? : http://www.neurosurgery.co.za/about.html
 

masterjen

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Surgery was presented to me at one point, and my response was "no way, no how". My brain creates my mind, and my mind and brain create who I am. I don't want any of that to change. A video EEG in January of this year determined I was not a candidate after all, and it was a relief to be honest: I would not have to deal with Drs attempting to lead me in the surgical direction. Mind you, this has returned me to the "war" of trying to get control on medication, but for me this war is only 4 years old so there are still anti-seizure medications out there I have not tried.
 

Cint

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What danger does having TCs and partials weekly actually pose?

I'll admit that my quality of life suffers severely, but surgery can take away my quality of life permanently whereas medication can be chopped and changed. I don't know what I'm scared of. I just know that I'm scared. And I've read all the data, so information is not going to take that fear away. When the option isn't imminent, I do want surgery. But when it draws in closer, I don't want it.
Actually, having TCs can kill or lead to severe injury/accidents that eventually kill, so one has to weigh the options.
I suffered 1st, 2nd and 3rd degree burns due to a TC seizure. I know a woman who lost her daughter, due to a seizure. I've known others who have lost their quality of life, due to brain surgery. Others here on CWE have had success. Every one is different. No one knows what the future holds, not even the neurosurgeons.
 

Cint

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for me this war is only 4 years old so there are still anti-seizure medications out there I have not tried.
Surgery was presented to me after 10 years of seizures and trying all meds at the time. Initially I said, "No way", but the seizures intensified and I finally had the left temporal lobectomy. To this day, I wish the VNS had been available to me at that time. I would have chosen the VNS over brain surgery any day.
Now I do have the VNS and have tried over 10 meds.
 

pita300

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Its a crap shoot. My surgery was considered a success even though I take medication every day to control the seizures which were controlled until 3 years ago. Now I have what the epileptolgist calls pseudo seizures. If your a candidate your chances are good of coming out of surgery seizure free. Do I think it was worth it 30 years later? I have to say yes
 

kirsten

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Cint, what was it about your surgery that lead to your regretting it? And how has the VNS helped you specifically? I've been getting a little doubtful about VNS after hearing Arnie's recent troubles with side effects.

And Pita, if you're still having pseudoseizures, what is it about your surgery that makes you say it was worth it?
 

kirsten

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I guess when it comes to the dying part, I tend to think more about quality of life because no quality of life means you may as well be dead anyway and good quality of life is worth everything, so it's the part about whether surgery will improve or worsen my quality of life that stumps me. I don't want my current quality of life but I don't want my quality of life to worsen, either.

My current quality of life could do with an improvement BUT it's also good enough to be worth fighting for. THAT's what confuses me.
 

Belinda5000

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I've had RTl,VNS nothing has ever worked to make my sz'sgo 1every 6 months even. If I want to be able get out we have to be able to live some where so I can take mass transit and that makes 2 countys.I refuse to move to county were have to have car get to bus stop.
 

pita300

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The fact that I went over 20 years without a seizure Yes I was still taking anti seizure meds but The fact that I lived a normal life for that long was worth it. The pseudo seizures are (if thats what it is) are frustrating but I'll beat those also.
 

arnie

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Kirsten, I can relate to where you are. A neurologist I had for years kept telling me I would be a good candidate for surgery, but I was pretty certain he was saying that more because I was not getting my partials under control than because my seizure types, seizure focus, etc. were amenable to surgery. My response was always the I was happy living with the relatively minor inconvenience of a bunch of complex partials and would not want to risk the potentially devastating outcomes of surgery. That was what I told my most recent neuro, too, and I have never regretted not having surgery.
I started thinking more about the VNS when I was realizing that all the years of refractory seizures and AEDs were apparently taking a toll on my brain, what with my worsening memory and face-blindness, especially. As you know, I'm having some issues with the VNS. I'm hopeful that those will eventually be resolved, but there's also a piece of me wondering if I will ever have any control over my seizures without being on meds. (At least the meds do prevent the tonic clonics for me.) If the VNS can't either reduce the seizures or decrease my meds, or both, it won't be worth putting up with side-effects, especially the sleep apnea.
One other thing about the VNS: My recollection is that it is indicated mainly for partial seizures and not so much for the tonic clonics. You might want to look into that aspect as well, when you are making your decisions.
Hang in there!
 

Cint

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Cint, what was it about your surgery that lead to your regretting it? And how has the VNS helped you specifically? I've been getting a little doubtful about VNS after hearing Arnie's recent troubles with side effects.
I was seizure- free for 14 months. Then the seizures came back with vengeance. Before surgery, I was having CP seizures and the meds were controlling the TCs. After surgery, The meds couldn't control the TCs either. They were more intense and happened a couple times a month. Plus, I went into a deep, deep depression AFTER the surgery. The neuropsychiatrist had me try many anti-depressants, then finally put me on meds for bi-polar. And now my memory is really bad. Then when I heard of the VNS, I asked my neuro about it, and I was the 27th patient who had it done at that university back in 1997. It has helped me tremendously because first of all, I do have auras, so I can use the magnet when I feel the aura to stop a seizure. I haven't had a TC seizure now in years. I have had some CPs, but they happened when I was needing a new VNS and needing the settings adjusted. I have mine at the highest setting to control my seizures. Plus, the VNS is also used for depression and I think that has helped me with my depression.
But I'm not saying the VNS comes without problems. I've had a few. I've had some breathing issues with it. One time my then husband had to call 911 because I could not catch my breath because of the VNS and I was turning blue. They gave me a breathing treatment. Now I keep an inhalant handy. And initially, I had some swallowing issues so basically had to re-learn how to eat and go about it much slower. But I still wish I'd had the VNS surgery before the brain surgery. The VNS can be turned off. The brain can NEVER be re-done.
 

kirsten

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20 years, Pita! That's something to aim for.

I have to admit, Arnie, that the particular side effects you're reported on your thread have really made me reconsider. I would hate to live with those kinds of symptoms. My recent run in with arrhythmia has also made me question VNS for myself--it's contraindicated for arrhythmia.

And as you say, if VNS is not really indicated for tonic clonics, and another neurosurgeon has already told me I'm a good candidate for a resection, the logical course seems clear to me.

I went deeper into this Cape Town neurosurgeon's site, which he has written himself. He's written a long page about resections, and how he comes to the conclusion that it's a good option. I felt a lot more secure after I'd read it because he says he looks at the psychosocial implications, not only after surgery but before and during the diagnostic tests. He talks to the family, and he assesses, for example, what sort of career I have and how my exact seizure focus would affect that career. He also says that when the focus is right in that language centre, he can also resect only the primary focus, and not the other problematic areas, with the patient awake, so that language is NOT affected. That is a different kind of surgery than the typical temporal lobe resection, which goes after several different zones around the focus as well. I don't know what point there would be to my life without language. It'd be completely empty. I mean, we're all born with certain passions and talents, and we can't just pick up new ones when we lose what we had.

I was impressed by the many, many things Dr Melvill does before choosing surgery (on top of all the typical tests). He even sends you to a neuropsychiatrist to assess your aptitudes, because he believes those need to remain unaffected by the surgery and he needs to aim for leaving them intact. Also, he says that the neuropsych exam might contradict what shows up in the VEEG, and if so, he must reassess. These are all positive things.

I won't say I'm overjoyed but my mood has lifted a notch. I feel more confident.
 

arnie

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Sounds like you have some very thorough docs working with you. My current epileptologist was that she would have recommended surgery for me before the VNS. She has had a lot of positive outcomes with her patients who have had surgery. It's probably a little late for me. Maybe not, but at this point I'm still not wanting to try anything else.
Again, though, it seems like you are on a good path with some good doctors.
 

kirsten

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I did some Googling because I hadn't heard of doctor Melvill before. Someone had gone to America to have a resection and the doctor asked why he'd do it there when we have some of the best neurologists and neurosurgeons in the world. Dr Melvill and Dr Shah (the one who did my first VEEG) are apparently world class, and I didn't see any other neurosurgeons being recommended. Just as well I had Dr Shah where I used to live and now I have Dr Melvill here. And I have to acknowledge that, if I was going to have untreatable epilepsy, I couldn't have asked for a better seizure focus. There is no other part of the brain that gives a better outcome than the temporal lobe in a resection.
 

kirsten

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Cint, I can't remember where your seizure focus was? Presumably you did have the temporal lobe affected if your memory worsened? For me, memory and mood swings are a non-issue. We all have different priorities and mine is my creativity and verbal memory. I am steadily losing much of that already with all the TCs, so that will also have to factor into the equation. I'm sure that if my memory declined, it'd be incredibly tough to deal with but not tough enough to keep me away from surgery. I am already treated for mood swings very successfully. I'm pretty confident that if they worsened they'd not be a problem to get under control with my current medication, which I've been taking for about three years. I do understand your point about the VNS, though. It is something I will have to go over with the surgeon. He'll be able to tell me which is likely to be most effective and how much damage I can expect from a resection. I'm sure we'll also discuss DBS and possibly even that new implant that was just FDA approved.
 

Cint

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Mine was the Left temporal lobe, deep in the hippocampus where the memory issue is. They could not go back in to get the rest of the damaged area because then I would definitely end up with NO memory and be unable to speak. Like an end stage Alzheimer's patient.

I had NEVER been treated for mood swings like that before. Depression, yes, but never had I been suicidal and unable to get out of bed for days at a time until AFTER brain surgery.
And like I said, the VNS can be turned off, but brain surgery can never be reversed.

Have you checked this website:http://us.cyberonics.com/vns-therapy/when-to-consider-vns-therapy
It is a bit more in depth and tells more than arnie's posting.
 

kirsten

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Yes, I've gone through the Cyberonics site. I've also looked at some independent studies. If I had it my way, I would go with your reasoning (sort of). I would wait until we received the new implant in my country (would probably take a year or two) and have that done. Nothing before. But my doc says we absolutely have to stop these TCs. Still, the surgeon will have a better idea of what to do. I think I'll be far clearer after I've seen him.
 

Cint

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. But my doc says we absolutely have to stop these TCs. Still, the surgeon will have a better idea of what to do. I think I'll be far clearer after I've seen him.
:agree: Stop those seizures, now! Like I said before, I was having TCs also, but we still went ahead with the VNS and it did stop them because I do have auras.
But the surgeon will have a better idea as what is best for you.
 

qtowngirl

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What danger does having tonic clonic seizures and partials weekly actually pose?
not only your physical safety (continuance of falling and which time it will be that you're permanently injured), but also your unwell brain. with every seizure, tonic clonics causing the most internal damage of all, the brain's quality and ability lessens. kirsten if you're having them weekly that has a huge immediacy for help.
i write as well so totally get how you feel, you don't want that affected. unfortunately tho, with a life of ongoing damage to the brain, your ability to write and create will lessen. no one knows when, no one knows how bad, but we all know WHY.

my surg was temporal lobe as well, 2 in 1 (ATL resection and amygdalo-hippocampectomy), and i did all the research, asked all the questions for a year before deciding. i wanted the 'possibilities' if i chose not to, and my neurosurgeon said i would feel the same for awhile, then life would start to deteriorate. seizures way more often, safety gone, and by the time i was in my mid to late 40's it would be a permanent, new, and devastating way of life. many things played into my decision, but looking at that possible road ahead was my main reason - i felt if i chose not to do something so risky, i was making up my mind to deteriorate, just wouldn't know when.
so i made the call, too damn young to choose a life like that. that being said, there was great reasoning for the surg, being that i had a lesion to remove (i'm very lucky).

same for you, something to remove? or a simple resection (removing seizure focus)?
 

kirsten

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Thank you, Qtown. I'm going to save your message onto my computer. I like to stay in denial about the damage that has been caused and the damage that will be caused in the future. Your post is a good reminder to keep me in check. I am already losing my creativity. I managed to produce a book in a short space of time before things began going downhill. In the past three years since my seizures have been bad, I've written only eight poems and two pages. I sometimes struggle to write for clients and they get confused about the difference in quality. I've had an editor write back about work I'd submitted. She said it was as if it wasn't written by the same person. Thankfully, I still manage to produce good work writing 90% of the time but, as you say, that will continue to decline.

The surgeon who did the VEEG said there was a seizure focus. The neuro who I was under said that he suspected that my epilepsy had been caused by a near drowning I had as a child. I didn't know to ask if there was an actual lesion and they never told me. Also, they were using the word 'resection' and not 'lobectomy.' I'll have to call and get those test results back. It'll be interesting, because I never read them myself and it was done about 15 years ago. But I do know my file is still there with the results because my doc called my neuro about it recently.

When I had the second VEEG, the epileptologist explained that it was necessary because your seizure focus can change. Still, my seizure symptoms are classic temporal and occipital lobe, which is consistent with my first VEEG results--it's temporal lobe focus with seizures that radiate into the occipital lobe.
 
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