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Scared of surgery

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

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

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

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

Great to know that you looked

Great to know that you looked into other teams Michael. Having Epilepsy doesn't mean we have to settle when it comes to how our team operates. Medicine is like any other area in business. Your clients are important. As a result, when you, the medical side, don't take them seriously, well, they sure should look into other medical specialists. Best Regards

Nigel,I too was very glad I

Nigel,I too was very glad I made the change; I was not only uncomfortable with the recommended treatment, I strongly disliked the way the epilepsy specialist at the first center was treating me.  I felt like doctor thought of me as a child who needed to be led by the hand and told what to do.  Being at university hospital for >25 years I had seen over a half dozen epilepsy specialists who were much more sensitive than that doctor.Could you clarify what you meant. "...when you, the medical side, don't take them seriously, well, they sure should look into other medical specialists."  They (the epilepsy doctor) should look into other specialists?Thanks for your comments,Mike

Thanks for pointing that out

Thanks for pointing that out Michael. When I revised that last paragraph, the way it was structured, well, I can see how it can create come confusion as to what the point is. :)I was referring to the fact that given Epilepsy can be so misunderstood, well, sometimes the patient can find him or herself with a specialist who is incomplete in their assessment. For beginners, some can approach us as if we are still in pre-school. :) You cited a great example when you found yourself being assessed as if you are a child. I once left an organization who dealt with Epilepsy because the individual I saw was similar; not that good in her approach to individuals with this condition.  

I have had 2 right temporal

I have had 2 right temporal lobe operations. I was diagnosed at 18. I also tried alot of different med combinations.I seen my first neurologist for 5 yrs, but I was not getting any better. I then seen a different neurologist who refered me to an epileptologist in 1999. He tried me on a few different meds and put me in hospital for VEEG.                                                  I had the first operation in 2000. I had no seizures for almost 2 yrs. Even though I was having seizures again, I was better than I was before the operation. They were not occuring as often as they were before the operation. My auras were longer than they were before the op. I thought that was a good thing because I had more warning before the seizure started.I was not having seizures in my sleep, which I was having alot of seizures in my sleep before the operation.      The seizures then slowly started to get closer together.I tried more new meds and participated in 2 medication studies which did not help. That was when a second surgery was recommended.  I had the second operation in 2006. That time almost all of my right temporal lobe was removed. Since the second op I have only had a few auras. I had alot of auras in the first few yrs after. The auras then started to occur less often. I still have an aura occasionally, but they are alot weaker and they are very brief compared to before the second operation.   The only thing that the operation affected was that I lost a small part of my visual field on the left. I was told that it was not affected enough to notice. It was the visual field test that picked that up. I had a neuropsychology test 1 yr after operation. The results were good.    My meds are Keppra and Tegretol.I did have a try at stopping Tegretol after I had no auras for over a year.That was under Dr's instructions. I slowly reduced the dose over a month. I then had 2 very strong auras. They were the strongest auras I have had since the second op. So I started Tegretol again.  I am still on the same dose of meds that I was taking before the operation. That is because of the auras.  When my Dr talked about an operation for the first time, he took alot of time to inform me of the details.He did stress to me that it is elective surgery and I should have a good think about it first before he referred me to the neurosurgeon.  I was keen on an operation when my neuro first talked about it. He didn't pressure me into it. He gave me the details and left me with the final decision. At that time I was ready to have a go at anything because I was tired of having side effects from the meds when they were not controlling me.  The decision to have the second operation was easier to make because a had been through it before and knew what to expect during the time of surgery.  If you have an epilepsy foundation nearby, it would be a good thing to see if they can organise for you to personally speak to someone who has been through surgery. Before my first operation, I had met a few people who had been through surgery. I found it was good speaking to people who have been through it before.          I wish you the very best with what ever decision you make.      Beetle

I was 27 ys at time of first

I was 27 ys at time of first op, and 33 yrs at time of second

I have had 2 right temporal

I have had 2 right temporal lobe operations. I was diagnosed at 18. I also tried alot of different med combinations.I seen my first neurologist for 5 yrs, but I was not getting any better. I then seen a different neurologist who refered me to an epileptologist in 1999. He tried me on a few different meds and put me in hospital for VEEG.                                                  I had the first operation in 2000. I had no seizures for almost 2 yrs. Even though I was having seizures again, I was better than I was before the operation. They were not occuring as often as they were before the operation. My auras were longer than they were before the op. I thought that was a good thing because I had more warning before the seizure started.I was not having seizures in my sleep, which I was having alot of seizures in my sleep before the operation.      The seizures then slowly started to get closer together.I tried more new meds and participated in 2 medication studies which did not help. That was when a second surgery was recommended.  I had the second operation in 2006. That time almost all of my right temporal lobe was removed. Since the second op I have only had a few auras. I had alot of auras in the first few yrs after. The auras then started to occur less often. I still have an aura occasionally, but they are alot weaker and they are very brief compared to before the second operation.   The only thing that the operation affected was that I lost a small part of my visual field on the left. I was told that it was not affected enough to notice. It was the visual field test that picked that up. I had a neuropsychology test 1 yr after operation. The results were good.    My meds are Keppra and Tegretol.I did have a try at stopping Tegretol after I had no auras for over a year.That was under Dr's instructions. I slowly reduced the dose over a month. I then had 2 very strong auras. They were the strongest auras I have had since the second op. So I started Tegretol again.  I am still on the same dose of meds that I was taking before the operation. That is because of the auras.  When my Dr talked about an operation for the first time, he took alot of time to inform me of the details.He did stress to me that it is elective surgery and I should have a good think about it first before he referred me to the neurosurgeon.  I was keen on an operation when my neuro first talked about it. He didn't pressure me into it. He gave me the details and left me with the final decision. At that time I was ready to have a go at anything because I was tired of having side effects from the meds when they were not controlling me.  The decision to have the second operation was easier to make because a had been through it before and knew what to expect during the time of surgery.  If you have an epilepsy foundation nearby, it would be a good thing to see if they can organise for you to personally speak to someone who has been through surgery. Before my first operation, I had met a few people who had been through surgery. I found it was good speaking to people who have been through it before.          I wish you the very best with what ever decision you make.      Beetle

Hi, I have the exact type of

Hi, I have the exact type of seizures as yourself.  Medications didn't work I had VNS surgery thinking it may help.  It didn't.  I've been epileptic since I was 4 years old.  I'm now 36.   I was desperate to be free of my seizures so when my doctor mentioned surgery I jumped at the chance.  Don't be scared.  Yes, there are risk, but the possibility of being seizure free is worth it.  The surgery isn't as bad as you might think.  I had mine this Feburary 7 and I haven't had a seizure since.  I know it worked because a number of my seizures coincided with my monthly and I haven't had one seizure since my surgery.  I'll admit the first month of recovery was bad.  Your jaw will hurt and it will hurt to chew for the first month or two of recovery.  The worst part are the headaches.  They can be extremely painful without medication.  I also had extreme sensitivity to light and sound that would make the headaches even worst. I had to walk around with sunglasses and wear ear plugs.  If you do decide to get it I'd suggest getting as much sleep as possible after.  I literally did nothing but sleep the entire month of February and I was back to my old self by March and already returned to work.  Good luck.

Some really great advice; not

Some really great advice; not satisfied with present team, so I am looking around for second opinion.  This was all great information.  Thanks!

I have this same situation.

I have this same situation. Did you end up having the surgery?

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