Community Forum Archive

How many surgeries is too many?

Mon, 12/03/2018 - 21:10
I’ve had to do 2 surgeries before and now they’re considering a 3rd. If it doesn’t look good then they’ll do a VNS or RNS. Would a 3rd be too many?


What other options do you

Submitted by birdman on Tue, 2018-12-04 - 20:06
What other options do you have?  It sounds like drug therapies have not worked otherwise they wouldn't recommend surgery.  If your like many of us your choices are - seizures, side effects, or surgery.I had tissue removed from right temporal lobe in 1993.  Seizures continued so there was surgery to implant leads for further EEG monitoring.  Years later I three more surgeries involving VNS: VNS implanted, a generator replacement, and then generator removal as I opted to discontinue VNS.  Now I am scheduled for another EEG with depth electrodes implanted.  This will be done to prepare me for another brain operation which will include removal of what remains in the right temporal lobe (amygdala) and then possibly implant RNS system.  I am at a different epilepsy center now but I wondered and asked why they didn't remove all the tissue the first time; was is intentional, or did they accidentally miss it.  The surgeon at this center didn't know the answer to this.  If it was intentional that they left the amygdala maybe they felt is was better to error on the side of leaving something behind than to take too much out and leave me with something that can never be replaced.  I'd say three surgeries isn't too many to try.  I believe neurostimulation (VNS and RNS) offers great potential and if you qualify you shouldn't pass it up.  I did question my first neurosurgeon's aggressive manner toward removal of more tissue so I went to another center for a 2nd opinion.  I'm glad I did.  The doctors at this center are encouraging the same procedure but they seem more careful and open to the RNS option.  If you're concerned about getting that third operation done get a 2nd opinion from a different epilepsy center.  It's your brain and you have the right to get another opinion.  One negative part of getting another opinion: I found doctors at different centers can have different approaches and can hold different views on what is best.  Be prepared to hear from a doctor who may suggest something different from what your current doctors are recommending.  Go there with some goals of what you want to have done but be open to their views.  Mike

Comes down to whether your

Submitted by Jazz101 on Thu, 2018-12-06 - 21:13
Comes down to whether your last surgery was as good as it can get. Let me explain what I mean.I underwent surgery twice; the first time we had to be conservative given it was so close to language and speech and at that time the tests weren't as good as they are today. This last time I had an MEG done. It was my first time hearing of an MEG. This last time would be my last time because we were able to go much further in terms of figuring how far we could go in terms of surgery with minimal damage to language and speech. We did the language mapping during the actual surgery. I was awake and answering a host of questions while we were trying to confirm three specific areas that had failed the initial language mapping done with the internal EEG.When you map language during actual surgery, that's as good as the mapping can get. As a result we were able to remove 2.5 of the three areas that had failed the initial language mapping test. Those 2.5 areas along with the others that had passed the test.So as you can see, in my case surgery a third time won't be an option because we went as far and as specific as we could get.In your case I am not sure how they did their specifics. As a result it's hard for me to say whether a 3rd time is for you. It comes down to comparing your last two surgery; asking "What was removed both times?" and asking "What will be removed this time" and why?" Ask about the tests this time. If the answer looks like it makes a lot of sense then maybe it's worth it. I can't give you a definite answer because I don't know the specifics. But you and your team know the specifics. As a result, ask as much as you can of them. Then assess the answers; compare it to your last two surgeries, and that should give you a better idea. As Michael asked; "What options do you have?" And the only way to figure that out is by asking hard questions of your team. Request a comparison to the last two. I majored in journalism so I ask questions because, as my neurosurgeon told the team who did my language mapping; "I don't like to guess." Those were the words of my neurosurgeon as he requested specifics of the team who were doing the language mapping test while he was able to actually see and touch the three areas that looked uncertain. Like me and like my neurosurgeon, the more you hear and see the better you would be able to sit down and assess the option. Don't be afraid to ask questions. Surgery a 3rd time might be a good idea if they can show you a lot of specifics that make sense. Had it been me and they could show me what was missed the last time and how we could make a difference, I would be a listener; Just as I listened to my neurosurgeon when he said; "Let's do the mapping during surgery." After all, he had proven himself in every meeting we had had prior to surgery. He was honest about expectations. He never told a wishful story. As a result, there wasn't much guessing on my side either. It's about you, your neurosurgeon, and the specifics he or she spells out, and how consistent he or she is in making sure you aren't guessing.  Best Regards

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