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Left Anterior Temporal Lobectomy- postoperative

My boyfriend had a Left Anterior Temporal Lobectomy 2/27/19 for cluster seizures brought on from an untreated TBI. Since then, he has had severe headaches/head pains near surgery site and the doctors said it should be a pretty painless surgery. He is also suffering from personality changes that are pretty hard to swallow for the rest of us. He had depression and anxiety before surgery, which seems to have increased since then. Nothing seems to make him happy, he seems to think none of us are trying to genuinely help him, he has become very aggressive and speaks down/nasty to us, saying some very hurtful things to us. Does anyone have any information or advice?! Please help us, we are desperate. Side note: he refuses to go on any additional medication for the depression & anxiety, since his seizure meds already give him adverse side effects.

Sincerely,

Desperate girlfriend :'(

Comments

I can see how this can be a

I can see how this can be a challenge for you guys; well, you in particular. About the pain? It's not unusual to walk away with some significant headaches that takes a while to ease as long as you are following the meds they might have prescribed. I can recall the first time I underwent surgery, I can recall them saying to me; "Don't wait for the pain; Make sure you take the meds." I found out the hard way, luckily while I was still in the hospital. I can recall not asking for meds until the pain showed up and that pain is a unique one. Let's just say it can be an 11 out of 10. So if pain medication has been prescribed, the meds should be taken as prescribed. After all he is no longer in the hospital where they can just inject it into his system, as they did with me when the pain really ballooned on me. After that I was a listener.Neurosurgery comes down to gearing yourself for some post surgical effects that, as my neurosurgeon put it, "Will require a lot of patience." I don't know all of the specifics in his case because I don't know you guys. That said, any patient who goes into neurosurgery relative to seizures and thinks coming out is going to be an easy walk was either not properly briefed; not practical about the fact that neurosurgery doesn't guarantee you 100% being seizure-free; not properly briefed on the fact that the brain has to slowly "reset itself" so to speak. These are things that I was briefed on prior to and post surgery. I will always remember my neurosurgeon saying; "My job (surgeon) was easy; yours (recovery) will be a bit more of a challenge and it will require a lot of patience.So let's get back to your scenario. A few things I want you to also know. Post surgery, given the brain his resetting itself, a patient can seem quite impatient and mean. I can recall being pretty mean to the guys at the hospital when I was being discharged because there was some confusion when one side was saying one thing and they other was saying something else. Luckily I was able to recall what my neurosurgeon had told me, as in being patient. I did apologize to them. Strong4Love? This will come down to whether everyone is being realistic. On his side, just as my neurosurgeon reminded me, I had to be really patient. Patient meant no rush to be able to read as good as I did right away. After all, in my case surgery was close to language and speech and memory. Verbal and non-verbal reading are so so different. Verbal in particular requires countless back and forth of information in the brain. Unlike speaking, which is just you spitting out words, reading involves information being starting in one part of the brain, then sent to another to be processed and then recent to the area. Post surgery, when it's close to language and speech and memory, well, simple reading is a challenge. That said, it eases with practice, preferably Speech Therapy, which I sought. You said he had anxiety and depression prior to surgery. Maybe you should speak with the neurologist about that too. Post surgery by itself, depending on where in the brain it too place, can be a challenge in terms of recovery. By a challenge I don't mean you don't get better. Just that it will require a lot of patience and practice. I used to pick up the newspaper, read up to a certain point and then just put it down when I realized it was getting the best of me. That said, I also picked it up later and read something else. Post surgery I was diagnosed with something called Aphasia. Aphasia plays out in three forms. Mine was a touch of designated areas in the three versus being any one in particular. I don't doubt recovery in his case is a challenge because it can come with its own challenges, but this will require each of you trying to figure out where your point is valid. Given his surgery was recent, well, he will have to find ways to be patient. Patience doesn't mean he can't get upset. I did at times. But I realized I couldn't take it out on others. I had to focus more on recovery.In my case my speech and memory and vision were affected. By vision it's not that I couldn't see. I just passed the "how many fingers?" test up to a certain point looking to my right given surgery was on my left. I also underwent a left temporal lobectomy. I am sorry the communication seems so mean. That has to hurt. When communication breaks down that is one of the biggest challenges. After all, that is how we all relate. My advice to you is to try to find a middle road between being a listener and being able to say "time out!!!!." After all, recovery itself is a challenge that requires patience on his part; patience and discipline. And it is hard to find that if he didn't gear himself for it prior to surgery. When the brain is resetting you'll see seeming here and there changes in the person. It's not necessarily that the person is now somebody else. It might be that they didn't realize recovery requires patience.

Try to balance what you can

Try to balance what you can see is personal when he speaks with you and they rest of the family and what might be real issues. That will be a challenge depending on how he was prior to surgery and just how really mean and how frequent he is really mean. Try not to fix what you can't with the snap of your fingers Strong4Love. How a person feels post surgery at times is a combination of how well they handle downsides. When I tried to read the most simple piece of writing right after surgery, as in the next day, you would have thought I never knew the words. That's how challenging recovery can be. The upside is when you know it's not going to be that way for life; that the brain has to readjust. It will just require patience and practice, as I geared myself to do post surgeryI hope you call, your boyfriend along with you and his family, can find a way to differentiate between what might be deliberate and what might be frustration. That way you know which ones to take seriously and which to just walk away from. If it seems like he wants space, then give it to him. It's up to him to reassess and say what really is the problem. Who knows, he might slowly become more of a listener when he finds you are not saying that much. That said, I will say to you what my neurosurgeon said to me and what his neurosurgeon should have said to him; "My job (writing) is easy. Your job (having to deal with some seeming hard changes in him) will require patience."  And I hope slowly he eases on going hard on you. Or at least tell you what in particular he doesn't like. That way you can do your own homework on whether he has a valid point or maybe he is just a bit too overwhelmed. I was mean to the guys at the hospital that one day. But upon recalling what my neurosurgeon told me, I was able to step back, see how mean it must have sounded, and put to work the patience and discipline he reminded me of. I hope he slowly finds some on his side. That way his recovery would be much, much easier. Best Regards

I can see how this can be a

I can see how this can be a challenge for you guys; well, you in particular. About the pain? It's not unusual to walk away with some significant headaches that takes a while to ease as long as you are following the meds they might have prescribed. I can recall the first time I underwent surgery, I can recall them saying to me; "Don't wait for the pain; Make sure you take the meds." I found out the hard way, luckily while I was still in the hospital. I can recall not asking for meds until the pain showed up and that pain is a unique one. Let's just say it can be an 11 out of 10. So if pain medication has been prescribed, the meds should be taken as prescribed. After all he is no longer in the hospital where they can just inject it into his system, as they did with me when the pain really ballooned on me. After that I was a listener.Neurosurgery comes down to gearing yourself for some post surgical effects that, as my neurosurgeon put it, "Will require a lot of patience." I don't know all of the specifics in his case because I don't know you guys. That said, any patient who goes into neurosurgery relative to seizures and thinks coming out is going to be an easy walk was either not properly briefed; not practical about the fact that neurosurgery doesn't guarantee you 100% being seizure-free; not properly briefed on the fact that the brain has to slowly "reset itself" so to speak. These are things that I was briefed on prior to and post surgery. I will always remember my neurosurgeon saying; "My job (surgeon) was easy; yours (recovery) will be a bit more of a challenge and it will require a lot of patience.So let's get back to your scenario. A few things I want you to also know. Post surgery, given the brain his resetting itself, a patient can seem quite impatient and mean. I can recall being pretty mean to the guys at the hospital when I was being discharged because there was some confusion when one side was saying one thing and they other was saying something else. Luckily I was able to recall what my neurosurgeon had told me, as in being patient. I did apologize to them. Strong4Love? This will come down to whether everyone is being realistic. On his side, just as my neurosurgeon reminded me, I had to be really patient. Patient meant no rush to be able to read as good as I did right away. After all, in my case surgery was close to language and speech and memory. Verbal and non-verbal reading are so so different. Verbal in particular requires countless back and forth of information in the brain. Unlike speaking, which is just you spitting out words, reading involves information being starting in one part of the brain, then sent to another to be processed and then recent to the area. Post surgery, when it's close to language and speech and memory, well, simple reading is a challenge. That said, it eases with practice, preferably Speech Therapy, which I sought. You said he had anxiety and depression prior to surgery. Maybe you should speak with the neurologist about that too. Post surgery by itself, depending on where in the brain it too place, can be a challenge in terms of recovery. By a challenge I don't mean you don't get better. Just that it will require a lot of patience and practice. I used to pick up the newspaper, read up to a certain point and then just put it down when I realized it was getting the best of me. That said, I also picked it up later and read something else. Post surgery I was diagnosed with something called Aphasia. Aphasia plays out in three forms. Mine was a touch of designated areas in the three versus being any one in particular. I don't doubt recovery in his case is a challenge because it can come with its own challenges, but this will require each of you trying to figure out where your point is valid. Given his surgery was recent, well, he will have to find ways to be patient. Patience doesn't mean he can't get upset. I did at times. But I realized I couldn't take it out on others. I had to focus more on recovery.In my case my speech and memory and vision were affected. By vision it's not that I couldn't see. I just passed the "how many fingers?" test up to a certain point looking to my right given surgery was on my left. I also underwent a left temporal lobectomy. I am sorry the communication seems so mean. That has to hurt. When communication breaks down that is one of the biggest challenges. After all, that is how we all relate. My advice to you is to try to find a middle road between being a listener and being able to say "time out!!!!." After all, recovery itself is a challenge that requires patience on his part; patience and discipline. And it is hard to find that if he didn't gear himself for it prior to surgery. When the brain is resetting you'll see seeming here and there changes in the person. It's not necessarily that the person is now somebody else. It might be that they didn't realize recovery requires patience.

Don't be too hard on yourself

Don't be too hard on yourself. You said he seems to feel none of you seem to be helping him. Then ask what is it you guys are getting wrong, so to speak. His answer might help you better understand if he has a valid point or if he is just overwhelmed and taking tossing is frustration your way.What's most important is that you are not overwhelming yourself. Best Regards

You are welcome Ciara. If he

You are welcome Ciara. If he is pondering the success of the surgery, that will probably frustrate him. That is way the neurosurgeons usually don't tell us we'll definitely be seizure-free because the brain is so unique that they can't quite predict everything.If he is feeling regrets about the surgery that will overwhelm him. That said, overwhelming adds to the probability of seizures. So hopefully his neurologist can make these things known him. I have to be realistic about the fact that my seizures can return. But knowing my neurosurgeon did a great job, coupled with the fact that I am realistic about the brain, I don't ponder it daily. I have had auras post surgery but over time we edited the medication that has been effective. In my case it wasn't a surprise because I knew we had to leave a very tiny piece in place because it was almost language and speech. That said, we did the language mapping during the actual surgery and we were able to remove 2.5 of the 3 pieces that initially looked like it could not be removed. That 2.5 and the other areas that had passed the test when they did the language mapping during the actual surgery.Sounds scary but it's amazing how you can still function during the actual surgery. And because we did it that way my surgeon was able to see and touch the areas as I was answering questions. That way he was able to calculate the 2.5 of the 3 areas that initially failed the language mapping test.So as you can see, that half of that tiny piece we had to leave behind is what made me not so surprised when the aura occurred. I hope you guys can manage to maintain yourselves and hopefully his frustration eases. Best Regards

Hello,Painless surgery?  Even

Hello,Painless surgery?  Even if I hadn't had the experience I couldn't imagine having my skull drilled into as being painless!  I had surgery on the right side and I'm pretty sure the headaches lasted at least two weeks.  Depression was quoted as a risk, with the proviso that it usually works itself out.  Nobody was around to complain about my personality. :)  I have described some of my thoughts and experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewKevin

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