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Scared of surgery

Thu, 01/03/2019 - 11:56
Hello. I am 42 years old and i have right temporal lobe epilepsy. I have exhausted all the medication changes that are worth dealing with. Now with only a 5% chance of any medications working, surgery is here. A year and a half of miserable testing and they believe they have the spot and no damage will come from removing that small section. If that doesn’t do it, we cut out more. I have a really hard time believing there is ANY part of your brain you dont need. Advice please! Scared, confused, undecided! Please help!

Comments

So the beauty is that

Submitted by Jazz101 on Thu, 2019-01-03 - 19:09
So the beauty is that anything in life is how we see it John. I get your take and I'll tell you why, even though eventually I did go ahead with surgery. Most of the times there are upsides and downsides to whatever we are assessing. As a result, the better we get the chance to assess things the easier decisions are. Neurosurgery comes down to a few things. First, a surgeon who is realistic with you about short term and long term effects post surgery. Not just that, but they also should be able to spell what part of the brain is undergo the surgery and how that can affect other areas.When I first looked into neurosurgery I was all open minded because I was following the facts. We did the tests that displayed where the seizures were centered, and we realized it was the same side as language and speech and memory. Nonetheless, I was a candidate. That was umpteen years back.What changed my mind then was the fact that I was getting some mixed messages from that team. And with that I decided I was no longer going ahead with the surgery. That was with that team.Years later I got the information transferred to another team. We repeated a few of the tests and we compared the information. In my case we did an internal EEG (not sure if that's the term but that's where they get the points on the brain itself, versus just being on the outside of your head).I was now in the hands of a neurosurgical team who were saying; "Let's not try to guess. Let's get as much information as we can and then figure out how we can go about surgery." That's the type of neurosurgical team that was for me. They were very realistic. No guessing game.I was told of the after effects if I go ahead with the surgery given language and speech and memory were on the same side (left temporal area). I was also told that post surgery will require some patience on my part given those features were so close. Again, my team was giving me everything I needed to hear.That's the type of team you need. I was all good to go ahead with the surgery because I new nothing would surprise me. After all, my team was crystal clear with me about the upsides and downsides. I knew post surgery was going to require some patience on my part given the other features that were nearby. Doesn't mean you can't function John. Just that some things might be a challenge from a short term perspective. I my case it was speech, memory and a slight interference with my far right vision. I was only able to get the "how many fingers" test right up to a certain point as a looked to my far right. That said, I was briefed that it would readjust, which did happen.  Prior to surgery when we did the language mapping, three areas were too close to call in terms of surgery even though I was undergoing an internal EEG. And that's because sometimes even the internal EEG can be tricky given what functions might be nearby.That said, I was prepared for that because my neurosurgeon had told me about the proximity to language and speech and memory. So when he suggested that we repeat the language mapping test during surgery to see whether those three areas were good to go in terms of surgery, I had no problem doing that because, again, I was in the hands of a team who were very realistic. No guessing game. We did the language mapping tests again during surgery and the results showed that of the three areas that weren't approved via the language mapping test during the internal EEG, two-and-a-half passed the test, meaning it was safe to remove those areas. And that's because the surgeon had the chance to see and touch those areas while I was answering a host of questions. Yep, answering questions during actual surgery. My advice to you John? Make sure you are comfortable with your team. Ask questions. I walked away from surgery once because I got mixed messages from that team. With my last team, I go no mixed messages prior to surgery. As a result I got a better chance to assess whether I could handle it. Post surgery I remained patient and I did undergo some speech therapy, as I was told, prior to surgery. I was able to be more patient in how I approached things because they were all outlined to me prior to surgery. This is what surgery comes down to. By the way my vision is intact again in term of the finger count as I look to my far right. With my speech? Well, because at times I do have a challenge with the term I might be seeking, I am now able to put to work something my speech therapist suggested. I hear you John. Your first time. You are probably also thinking age. Hey, I'm in your age range. How you feel is real so surgery for you would come down to assessing a few things, as it did for me. The first time I said no because that team was sending me mixed messages. But once I got a team who thoroughly briefed me, nothing post surgery was a surprise. As a result, I was ready for the post surgery challenges.

I like what Nigel said in the

Submitted by birdman on Thu, 2019-01-03 - 20:30
I like what Nigel said in the comment about getting opinions with different teams.  I was being treated at one epilepsy center where they seemed a little pushy and didn't inform me too well.  I went for a second opinion at a different center and they were much different.  They are going about it in a more careful manner.  Get a second opinion if you are not comfortable with the info you are getting from your current team.Also I would add the idea of neuroplasticity.  This is the brain's ability to compensate for flaws and damage it gets.  Brain surgery isn't like removing the liver where you would be left with nothing to serve its function.  When we are younger our brains have greater neuroplasticity.  I know the age factor isn't a comforting thought as I too am considering my second brain surgery soon at age 53 (on my first surgery they removed MOST of my right temporal lobe).  But the encouraging side of this is that the part they intend to remove (my right temporal lobe amygdala) shows signs that it has not functioned right for many years and I'm told there have been other regions that have already compensated for the deficits or dysfunctions of my amygdala. Since you have tried many medications I assume you have had epilepsy for quite some time.  That's too bad, but having seizures for so long may mean that the area that they intend to remove has already failed to function normally and there may be other ways your brain has already compensated for this.  If so, brain surgery will do little to change the way your brain functions.Our choices are: seizures, sided effects, and surgery.  Surgery will probably not eliminate the need for medications and putting up with some side effects, but hopefully it will reduce the need for uncomfortable medication levels, medications changes, and of course the seizures.  Also, before you agree to resection, specifically ask about alternative surgical treatments like VNS and RNS.Mike

John,I had RTL surgery at the

Submitted by RTL on Fri, 2019-01-04 - 20:44
John,I had RTL surgery at the very same age as yourself.  I have detailed my experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewKevin

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