Thoughts about surgery

[qtowngirl]

you're welcome hun

it's def hard to swallow, i so get it, that the damage is already in place. and will get worse. such a hard thing for us with e, seizures and the physical damage they cause are enough, but knowing there is internal damage also. like anything, it's easier to keep the truth at bay when you can't literally look at it.
this became even more of a reality for me when my neurosurg sent me the mri that found the lesion. sat and stared, and cried, and measured, and..... what a moment in my life.
they said the only issue after, if i even had one, would be declined verbal memory. well, i do have that but it's not as bad as my short-term memory. since i was born i've had the memory of an elephant, and at age 35 it was a loss i had to accept.
can still work, drive, conduct daily life etc., but a few times a day i have to tell myself it's ok *shake head and smile*, b/c i'm not having seizures.
that's all that matters. who cares if i can't remember that i was just going to/just did do/say/handle something last week i actually took out things for a nice family dinner, started dethawing and planning. two hours later i grabbed something else out of the freezer, started dethawing, and put together what i thought should go with it.
when i realized that a) two dinners were about to take place and b) i had forgot about the first one, ALL i could do was shake my head and smile.
it hurt a little b/c that is NOT the regular me, but that's the me that's not having seizures, and that was the reason for doing it.

kirsten as you know it's so personal for everyone to decide, i can't really 'convince' you either way. it's one of those damn things - i have heard/read some very negative things about the VNS as well. myself i'd never put it in, esp. due to the fact that whether one keeps it going or not, it will never be removed from the chest.
keep us posted how this goes with the new neurosurg pls! i read his file, he sounds AMAZING. mine is the head of epilepsy and teaching neurosurgeons/epileptologists, so i get how good it feels to be in such gifted hands.

:hugs:

 

[ashmstng]

Hello Kirsten, I haven't been on this board in so long. But I seen your post about surgery. I figured everyone had there good and bad. I had seizures (Complex partial) since I was 3 years old. I have been on every med you can think of. Then I had the VNS, it shortened the seizures but never stopped them. Not counting after doing everything you can think of there is, I decided after seeing 3 Neurologists, to get another opinion. When I did that, I got the part of him sending me to Gainesville which is 2 1/2 hrs away from home to see if I was a candidate for the surgery. Sure enough I was. Before I even thought of doing so, I did every research you think of and opinions. It finally came down to the point, that I had a big decision to make. It took me a lot of time and thought. But I decided to go for it. All I can think of, is it can get rid of the seizures and I can be seizure free for life or it can shorten them. Even though there is worse stories, I stayed positive. Decided to go for it. May 22nd 2008 I had my surgery (Left temporal lobectomy), since that year and date. I have been seizure free for 6 years now. Before the surgery I was on tegretol, Topamax, and Keppra. They took me off tegretal before the surgery then after the surgery they took me off Topamax. Right now I am still on Keppra, waiting to go back to the Neuro at the end of July to see if I can get off the last. If not that's fine. But I can say I have made it this far and I will continue to spread the word about Epilepsy and my story. But after this apmt I am planning to start driving. One thing I never got to drive to go school like every other kid did, I had to take a bus. I would not change my mind for the world. I feel I made the right decision. I really hope you the best.

 

[BIGMAN131307]

Hello Kirsten,

I know that scared feeling. My seizures started when I was young. The good thing, if you can call it that is they were Complex Partial Seizures. They would come with a aura, and last 5 minutes or less. As I got older I had them more often. Eventually the auras would stop leaving me without warnings. My neurologists discussed medications, and surgery. The thought of surgery was scarey, so I went the medication root. In 2003 I gave surgery a consideration. So I had the WADA test and Video EEG done. Both showed I was a good candidate for surgery. But at that time I wasn't ready, so I
chose to stick with the medication route. 14 different AEDs, gall bladder surgery, and 10 years later I felt it was time for surgery. In Oct 2013 I had an MRI and another Video EEG done. I wanted to make sure I only had one seizure focal point, and that it hasn't gotten any larger. All the tests matched up, making be a great candidate for surgery. All my vital functions are on my left side. On May 13th 2014 I had a Right Temporal Lobe Resection. I was home May 19th. It's been over two weeks since my surgery and I feel good. I've just a bit of swelling near my jaw, and minor headache. My staples come out later today. I'm still the same guy I was before the surgery. Sure I was scared, but a future of continuing seizures is more scarier.

Think about your quality of life now. Can it be better? Would more medications improve it? Is surgery a better option?

Whatever you choose, good luck.

 

[Matthew74]

Kirsten:

I can totally relate to your thoughts about surgery.

Before letting them cut you up you should try the ketogenic diet first. You have nothing to loose and everything to gain.

I have been on the Low Glycemic Index Treatment (LGIT) for two weeks and I have already improved immensely. I'm still having partials, but they are way better. I may have even been seizure free at times yesterday. (IMHO I have been in non-convulsive status for much of the last ten yeasrs.) My mood is also tremendously improved. I didn't realize how depressed I was. My mind fog is lifted. I'm more alert, more aware of what is going on around me. My headaches are almost gone. Last saturday I couldn't believe how good I felt. I was in the park and so relaxed and happy. Yesterday, for the first time since I was a kid I just started running because I felt like it. I'm starting to feel guilty about not working, and applied to three jobs. I feel like doing things. I used to just have to drag my body around like a lot of dead weight. I was in pain from the fatigue. I couldn't think. I'm feeling ways I haven't felt in 30 years.

It's a very effective treatment. You can learn more about it at the Charlie Foundation. http://www.charliefoundation.org/

There's also Matthew's Friends (UK). http://www.matthewsfriends.org/

Someone in Cape Town:
http://www.thedaisygarland.org.uk/our-ketogenic-dietitians

An online seminar about adults and the Modified Atkins (MA) diet(s):
http://www.carsonharrisfoundation.org/jhh_support_group_low_glycemic_modified_atkins_diet.php

This is a great book:

You can order it here: http://www.loot.co.za/product/eric-h-kossoff-the-ketogenic-diets/svhd-1576-g240

It doesn't work for everybody, but it's very effective, more so than meds, and helps most people. Some kids even go off meds and the diet completely. For me, if I just get rid of these constant partials it will have been a tremendous success. Based on the last two weeks, I think that will happen.

It has a very good chance of stopping your T/Cs. Give it a try. They put most adults on the LGIT or MA, which are not as hard to do as the classic Ketogenic diet. It's easy to get enough fat, all you have to do is drink heavy cream. It's not hard to avoid the carbs, especially once you start feeling better. I got an app for my iphone to help me while I'm getting things figured out. After learning about it and reading about it I think it's a crime that they don't offer it to everyone with epilepsy. I'm not sure what the long term results will be, but it's worth a try.

 

[Cint]

Given all the different comments and points of view made here, just remember, "Never say never", because what you choose today may not work 10 years from now.

 

[kirsten]

At this point, I don't have the luxury of waiting six months or more, based on the little evidence there is of the ketogenic diet's efficacy in adults with generalised seizures. If I experienced a 50% reduction in seizures on medication, which would be a better than average result according to the few small trials that have been done on adults, I would be having between five and 10 seizures a week instead of the current 10 to 20. It wouldn't be sufficient, but of course, there are no more AEDs for me either, so it's not an option. The KD is really only a possibility for those who have refractory epilepsy and can take AEDs, and neither of those applies to me.

 

[Dignan]

I totally feel your fear on this one. I also write, and creativity and verbal memory have always been strengths of mine. I took Dilantin for many years and was unaffected in those areas. After changing off that drug due to bone loss, I now take keppra.

I have to say that I can tell my memory isn't as good and I just don't have those "ah ha" moments with new ideas. I used to be almost "hypergraphic" in that I was always jotting down notes and ideas on scraps of paper. That doesn't happen now. I have other side effects as well, and have thought about going back to dilantin, partly just to feel mentally like myself again.

My point is that whether its changing drugs, surgery, VNS, or maybe just the cumulative effect of seizures over the years it feels like so much of this is out of our control.

I'm in my early 40s and scared I'll be crippled from bone loss, and I worry that if I don't change drugs I wont be the same person and will have to completely reinvent myself both personality wise, skill wise, and job wise.

Please keep us informed on what you are going to do and your process. I do think the doctor you have and his understanding of your strengths and desires , as well as your career needs, is at least working in your favor.

Hopefully, you have people you love in your life who you care for and care about you to help endure any changes that may be forced upon you. It is one of the only things I find I can take solace in at times like this.

 

[kirsten]

It's interesting to hear that you have lost those 'aha' moments. I was most definitely hypergraphic, although I did at least go back to my work and turn it into something useful. These days, I have no aha moments. For a while, when I was on Keppra, they almost came back. Then I had to stop taking it. Of course, I still write professionally but that's not the work that drives me. My doctor keeps on telling me that it's more important to be healthy than to be writing but I really don't know if I agree. Sometimes I really wonder what would happen if I just quit seeing the doctors and quit the meds. What sort of life would I live? My doctor says that I would write for a while, but then the seizures would eventually erode my ability to write, and there would be no way of going back. So I'm beginning to suspect that I really won't write creatively again.

 

[kirsten]

Update: The VNS people just called me! I spoke to a man who lives in my city and he told me that my two best options are VNS and a resection, but that a resection is probably the best option curatively--it's more likely to work well for me. He said that deep brain stimulation is not really an option because it's very invasive and it's not reliable enough to warrant that. So of course, the VNS would be the least invasive option, and the best option if my surgeon thinks that I can cope with seizures for longer. But he thinks that a resection has a very good chance of working for me. So excited that there's actually someone here that I can talk to about the VNS. He says he can meet me at the end of the month once I've seen the surgeon. He also said that my neurologist is brilliant with epilepsy--good to know.

 

[arnie]

Hi Kirsten. I'm really glad you have a chance to talk to someone about the VNS. I found it very helpful to talk to the Cyberonics people in addition to the research I did on my own. I know I have had some problems with it, but I still want it to work and I believe it still may. As I'm sure you are aware, it's not expected to be an immediate fix, and can take a year or more to really get to where you will have the most benefit. I'll put a more complete update in my vns thread, but in a nutshell, I saw my doc yesterday and she lowered the current to cut back on the side-effects (which it did!) and (we hope) give my body more time to get used to it before we start edging the current up again.
As for the cumulative effect of years of seizures, which is definitely real, it's kind of hard to say what they have been in my case. I'm still pretty on top of most things, I suppose, except for the memory issues I have. I'm also having more trouble learning pieces on the piano, but I also have lousy practice habits, which certainly could also be the reason! That stuff is pretty frustrating, but not debilitating. I have, of course, no way of knowing how I would be now if I had not been having seizures for the last three decades.
One final thing here: Yesterday my doc told me that if we couldn't get things controlled with the vns she would still recommend surgery for me. ( If you recall, she also said she would have pushed me to have surgery long ago if she had been my doc.) I have no idea if I would be a candidate for it, and I will be pushing 60 (god, that sounds old! I don't feel like I'm closing in on 60!!) which might be too old? Well, that's a bridge to cross later. At least age is something you don't have to consider in that respect.
Well, as with most of the posts here, there is no definitive answer about what will be right for you. Just part of the wonder of epilepsy, I guess.
It goes without saying that all of us here are pulling for you and will be here to support you as much as we can.

Life goes on!

 

[Dignan]

Kirsten,

I wonder if when discussing surgery options if they mentioned anything about your age and whether that could contribute to surgical success while maintaining verbal memory, etc.?

I've started to think about looking into this again myself, and I thought I recalled something about the earlier one does something like this the better, but let me say that I am not sure about that and could very well be wrong.

I was just curious if they said anything about it in your discussions both for success in terms of ending seizures and success in allowing you to keep your skills.

 

[kirsten]

No, Dignan, there has been no mention of age, although my limited (and probably incorrect) knowledge of the brain tells me that younger brains heal better than older ones. What ever parts of the brain they have to cut through to reach the focus would have to heal well if you're to experience the least permanent 'skill-damage.'

 

[Cint]

Hey Kirsten,

Glad to hear that the VNS folks called you. It's hard to say what will work best for everyone, only you can make that decision for yourself. But in answer to Dignan's question, once they cut into your brain, depending where, it could effect your memory/speech. And it's better to have the brain surgery done much sooner for a better outcome.

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/surgery-candidates

-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 the past if it seems appropriate for that person.

 

[kirsten]

Thanks, Cint. I think my 'sooner' days have passed, but I still have the advantage of being younger than I will be tomorrow.
What I appreciate about the memory/speech part is that the surgeon can tell you what might be affected, and he can offer a slightly smaller resection that is less likely to affect your verbal memory but that leaves the outlying areas around the focus behind. It has a special name but it's far too complicated for me to remember. It seems that while you do the whole process of ambulatory EEGs and the craniotomy part and so forth, you are still in the decision making phase, finding out what the negative effects of the surgery might be.

But I feel far more secure knowing that there are cyberonics people here in South Africa. I left my number on the site thinking that I wouldn't hear back from anyone at all.