Anyone Had This Problem After Surgery?

[Cint]

Ruth,

I agree with Elaine. I don't like the word/label "epileptic". If a person calls me an epileptic, I reply with, "I am a person who happens to have epilepsy." I don't like to be defined by my disorder(s). I also have diabetes and don't like being called a "diabetic".

Elaine,

Tell your friend he has my sympathy. How dare the nurses say that he was pretending just for the sake of sympathy! I know that if it would have been me in that situation, my family would have gone to the upper management and given them a piece of their mind! My hope and prayer is that people such as those nurses will suffer something as traumatic someday and have someone laugh in their faces.
I had a left temporal lobectomy years ago, and still suffer from depression to this day. I also went through an early menopause after my surgery, so I think the surgery messed with my hormones, big time. I had the VNS surgery, since the lobectomy didn't work, and that has helped me with seizures and depression, but I still take meds for both. I hope you have a much better success than I did!

 

[Ruth]

Hi Elaine,

You gave me a very strong reason for not using that label for epilepsy. You gave me a background that I did not know about. So, therefore, I will never use that word again.

Hi Cindy,

What is your strong reason for not using that word? I would like to know the background of why I should not use that word. I will quit using it, because it offends you. That is reason enough.

Ruth

 

[Cint]

Hi Ruth,
I didn't mean that you personally offend me, but like Elaine said, that word, "epileptic", to me it sounds somewhat demonic or it gives the impression of people of less intelligence. I mean the general public, foolish, uninformed people who have NO idea what it is like to experience any type of seizure who use that word, they're the ones who really offend me when they use that word. But since you've been there, done that, you can use that word all you want!

 

[Ruth]

Hi Cindy,
I will not use that word or "diabetic" again. How many other people have I offended by the use of those words?

I am still learning. That is why we are here, to learn more. We need to correct each other if anything needs correcting. Because, I have had epilepsy for a long time, I should have known better. I want to be corrected. Correct me if I use another term. I will not use that word again.

You did not personally offend me.You can never offend me. I appreciate you telling me. I wish others would tell me and not worry about offending me. Like I said, we are here to learn.
Ruth

 

[flinnigan]

Hi Elaine and everyone else,

I met with my surgeon yesterday. All is well. He said I can return to normal activity. When I asked him about depression, dreams etc. He said it was a normal side effect of cranial surgery and even more so for hippocampal removal. He told me to give it a full 2 years for healing. So I guess we must be patient yet again. I am fortunate that I have not felt depressed. Quite the opposite. I'm normally a very cynical person, that dark British sense of humor, but since surgery have been quite sentimental. He had a good chuckle at that. I feel some of these feelings may result from having survived such massive surgery. i said to my hubby one night, that I had looked death in the eyes and was not afraid. Thats a very freeing feeling. I feel very blessed to have been through this experience and to have had you all to share it with.

I've had another weird side effect, again he said it is quite common,I have a greater sense of smell. Rather annoying actually and not very pleasant at times.

Best to you all,
Love,
Paula

 

[Ruth]

Hi Paula,

I am glad that I have had information about the dreams and smell. I did not know that it was a side effect of surgery.

Ruth

 

[Elaine H]

Hi Cindy

I am so glad that you can see what I was getting at hating with a passion the dreaded E word!! You would not believe people's perception of someone with epilepsy, my best example of this is, one day, a man asked me..." Why don't you drive Elaine?" Me being me, and very open and up front with people about my epilepsy looked hime in the eye and said " I have epilepsy that's why, hopefully, when they get it sorted out, I will be able to drive one day" God, if you could have seen his face, he stood back, looked me up and down a couple of times and said the most incredible thing to me..." Wow, you so don't look like an epileptic!!!" I was totally gobsmacked, and I said to him "What the bloody hell am I supposed to look like, what does someone with epilepsy look like mate, can you tell me that?" Of course he couldn't, but I wonder to this day what he would have given as a description, I often wonder if I was meant to be standing there, shaking, eyes rolling in my head, peeing myself, chewing my tongue, looking like some woman possessed. Epilepsy was once known as "The Falling Syckness" and that was the way they wrote sickness then, we were thought to be of a lower intelligence, and even as recently as last week, someone described that they had a relative born with epilepsy, and it was suggested that they were "smothered with a pillow at birth" I was totally disgusted with this!!
Does anyone have any memories of anyone at school, or while growing up that had epilepsy, or did anyone come across it while growing up, can you recall your feelings about what you saw or heard? I ask this because I unfortunately have the most horrific memories, and flashbacks to a family that we lived near when we were kids. There were two boys, and two girls, the youngest one had epilepsy, now we are going back to the late 1960's here. The little girl with epilepsy was kept tied up on a matress in the family's garage, and I remember the two boys taking my brother and I into see her, her name was Trudi, she would just lie there looking up at us, eyes empty and devoid of all emotion, just wanting to be picked up and loved, of course, I wasn't really old enough to understand, but I have never ever forgotten her, and I hope I never do. I just wish I could have helped her. She died very young, and had many other health problems bless her heart.

Thanks for understanding what I meant about hating that word, I have also never said "I suffer with epilepsy", people with cancer suffer, I have also always said that if epilepsy is the only medical condition that I have to deal with, I will be more than happy! It's not me that suffers, it's the others around me that have to look after me that have to put up with it. I am always the joker, the only way to deal with things, and I carry a card that tells people what to do should I have a problem, I have written on it..... I have epilepsy, should I have a seizure, you could help me by getting me to the nearest pub, and plying me with red wine, until I start to make some sort of sense. The book that I've written really is a middle finger to it all, and to people's unbelieveable ignorance, but I will always continue to help raise awareness, and I hope one day, people will have a better understanding of this condition, after all folks, look at the famous people in history that had epilepsy, Aristotle, Alexander The Great, Edward Lear, Lord Byron, Charles Dickens, Julias Caeser, so, it's hardly a sign of low intelligence is it?

Hope all is well, I'm still having the occasional wobbler, but I'm trying to keep positive, and with the love and support of a fantastic man, I will get there, and that elusive perfect job is out there somewhere!!

Love & Best Wishes

Elaine xx

 

[Elaine H]

Hi Cindy

Thanks for that, I'll be talking to Bill later on, and I'll pass on your comments. Isn't it disgusting that happened in this the 21st Century?!

Hope all is well with you?

Best Wishes

Elaine x

 

[Cint]

Hi Cindy

I am so glad that you can see what I was getting at hating with a passion the dreaded E word!! You would not believe people's perception of someone with epilepsy, my best example of this is, one day, a man asked me..." Why don't you drive Elaine?" Me being me, and very open and up front with people about my epilepsy looked hime in the eye and said " I have epilepsy that's why, hopefully, when they get it sorted out, I will be able to drive one day" God, if you could have seen his face, he stood back, looked me up and down a couple of times and said the most incredible thing to me..." Wow, you so don't look like an epileptic!!!" I was totally gobsmacked, and I said to him "What the bloody hell am I supposed to look like, what does someone with epilepsy look like mate, can you tell me that?" Of course he couldn't, but I wonder to this day what he would have given as a description, I often wonder if I was meant to be standing there, shaking, eyes rolling in my head, peeing myself, chewing my tongue, looking like some woman possessed.

Elaine,

Can you believe that several years ago I had another EEG done and the tech that was doing it asked me why I was having it done. I told her I have epilepsy and my seizures were not under control so my neurologist ordered another EEG. And guess what was the idiotic tech's response was? "You don't look like an epileptic." Wow!! I felt like rising off that silly bed and screaming at her. I also was thinking about saying to her, "You don't look stupid," but of course I kept my mouth shut. Here she was supposed to be educated and she said something so ludicrous. Others have said the same thing to me about being an "epileptic", too. I tell them I am a person who has epilepsy. And then I have had one who called the seizures "fits" Can you believe it? In this day and age people still saying such things.
:agree: with you, what the hell do others think we are supposed to look like, freaks from outer space or some evil, possessed person? That's why I hate the label "epileptic". I am a person who happens to have epilepsy, a brain disorder. If it can happen to me, it can happen to them, also.

I hope you find the work you're looking for.

{{{HUGS}}}

Cindy

 

[lonnie]

I had sugery 4 years ago. They told me there was a 50% chance it would cure my epilepsy or at least within a year reduce the amount of meds I had to take for it.

They removed my right temprol lobe. With that you have a GREAT Deal of not recongnizesing even people you know.

That is one of the thing the right temprol lobe does.
At first it did lower the epilepsy meds I was taking but now I am back up there again including the new Vampat.

I hate all of the side effects these drugs give to me but with other courses of actions I have just had the best three months since I started epilesy 17 years ago. I guess If I am willing to keep up with the drugs along with their side effects. The surgery could be some part of my improval. Yeah.

It's not fun, but even if it is the 50% not cure improvement is improvement.

Just to give you a warning. The post surgery was extremely painful for me. Months later my surgeon told me that happens more if it is a person who has migainces. She said that in the future she would warn patients who were going to have surgery of that. Best luck lonnie

 

[Endless]

Okay, different question. This isn't in regard to brain surgery. Sorry for the hijack.

I have to have sinus surgery. That means they are operating less than an eighth of an inch from my brain, at times. I have simple and complex partials, mostly under control on Trileptal but I still have about 1 per week (as opposed to the old several a day). The surgeon is asking me to go without my meds for 12 hours before surgery. That means skipping 3 doses of my Trileptal.

Is this going to cause a seizure? I'm especially concerned about DURING the surgery. What if I have a CP and I move?

Does anesthesia cause seizures? Or prevent them?

Are all anestheiologists equally educated about seizures/epilepsy and anestheiology?

How about after surgery? I'm afraid that in recovery I'll have a seizure, get up, and walk right out or hurt myself. Or the same afterwards in my room (they are keeping me for a night or two)

How about the mix of anti-seizure meds and pain meds? How do those mix or not mix?

I'm not feeling warm and fuzzy about all this. Your advice would be appreciated.

 

[Nakamova]

I recommend that you ask your neuro for his opinion on this -- it seems to me that it would be way more important to remain seizure-free during the surgery. Also ask why the surgeon wants you to go without meds? And while you're at it, ask about what kind of supervision/monitoring you might have post-surgery to make sure you don't have a seizure then.

I don't know it it's different for sinus surgery, but when I had shoulder surgery last year I was under with a general anesthesia. You're not supposed to eat or drink anything for 12 hours before surgery, but I both asked my surgeon and checked online about whether or not I could take my meds. The surgeon said yes, I should definitely take my meds, although with not too much water. I researched online about the "12 hours no food no drink" rule, and it turns out it's kind of an extreme precaution that doctors stress mostly because it's been the standard for so long.

I had no problems combining my Lamictal with the anesthesia, or with the Percocet. I took in the week post-surgery. (I took my Lamictal at 6am, and surgery at 9am.) However, everyone's sensitivities are different -- some people react badly to anesthesia regardless of whether or not they are on AEDs. Have you had general anesthesia before? If so, how did you react?

 

[Endless]

I've had general anesthesia before and I was fine, just some trouble breathing afterwards. That was before I was on anti-seizure meds, though. I am going to ask my epi about it all. I like to go in well educated about stuff, though, or it isn't a very productive conversation. I have to think of my questions in advance.

 

[Meetz1064]

I had

to have surgery in November, and there was a great big to-do about it getting done at all, because all of my seizures are nocturnal. My neuro has steadfastly refused to allow any type of surgery, especially any that requires general anesthesia. Even root canals are only permitted to use shots of Novocaine. YIPPEE. Fun, fun. :bigmouth::bigmouth:

This time however, the surgery was required to ensure that I didn't have to have a complete hysterectomy--and if I did, it would be done immediately. Luckily, I did not, and the surgery was done at the perfect time of day for me--all of the doctors arranged that. It wasn't originally that way, but they made it that way. onder:

It took the doctors about 3 weeks to fight it out amongst themselves how they would go about it.

I ended up taking my meds on schedule before and after the surgery. My neuro evidently insisted on backup IV meds just in case (I would imagine that would be Dilantin). My surgeon used a robot for the sake of precision and quickness. The anesthesiologist knew exactly what he was doing---I know his kids, and he and I had a long talk beforehand.

Like you, I NEED to have sinus surgery. I won't though. For me, that is in my mind, an elective type thing--I'll deal with taking Mucinex. I have nocturnal tonic clonics, and I will NOT take the risk of having one in my sleep, especially after the surgery, and screwing things up even more. My t/c's are very violent--I break bones, typically, sooooooo, I'll skip that surgery.

Honestly? Make all of your doctors communicate with each other. Best thing for them. Especially for you, as well. You have to advocate for yourself, though.

Good luck,

Meetz
:rock:

 

[Endless]

Thanks, Meetz.

This isn't really elective for me. At some point I have to stop taking all the antibiotics. What a great hint - have my doctors talk to each other! Might be a challenge when it comes to my epi. I guess I need to trust that the anesthesiologist knows what he's doing. Good hint on scheduling it so I don't miss a dose of my meds. Hmmm....

 

[Naomi55]

As a heads up, most surgery centers utilize CRNAs (Certified Registered Nurse Anesthetists)... I might inquire as to who will do the actual monitoring during the procedure. I trusted a CRNA with my daughter's surgery, but if you're considered high-risk, I think it prudent to be fully informed.

 

[lonnie]

Can you believe it's been over a year since my surgery?! No seizures,great stuff I hear you say, but sorry to admit this, I am a moody, miserable, nasty, evil venomous woman, who takes every opportunity to bite her partner's head off, moan, and be generally obnoxious, especially for some reason, first thing in the morning, I wake up feeling so negative and down, and get better as the day goes on. I am also going through the menopause, am still unemployed, miss my dear mum, and generally pretty peed off with the whole freakin' world!!
I am still doing my bit trying to raise epilepsy awareness, and if I had some money, I would be getting my book published by now, I just sometimes cannot see any light at the end of the tunnel, but I have never regretted the surgery, I am almost 95% seizure free, which makes being stuck at home all day every day worse! I am waiting to hear from several jobs, including voluntary work, but this bloody recession continues to make life pretty miserable for a lot of folk here in the UK!!
Hope you are all ok, and like me, you are conquering your epilepsy!!

Love & Best Wishes :banana:

Elaine xxxx

I ended up with an air leak and they had to go back in to end it. Then for a long time I had incredible pain. Latter my surgeon said that was more common in people who had migraines and she would tell her patients that in the future. returned recently Lonnie

 

[lonnie]

I had brain surgery and finger surgey too

Surgery questions about whether to take meds before is interesting. With my brain surgery they didn't bring it up that was I can't remember ( have no long term memory problems)( Sometime I can remember things or not) so I remember the surgery but not the date it was a long time ago.

But guess what I just cut two tendons in my finger and they did surgery in Feb. It was day surgery unit. They knew my meds but no one asked me not to take them and there was no questions about whether to take them with the pain control meds.

I ended up with extra nerve pain(still have) but the neurologist they sent me to to prescribe for help with it happened to be my own. That is when they put me on neuron-tin too. Having trouble with it reacting with my Vimpat if they are too close together. Whew talk about bad balance.

I'm a bad girl, if I am going some place special after my Vimpat. Occasionally I don't take it. We had been able to lower the dose anyways with the neurontin so I wish we could get rid of it and just have the Lamictal and neurontin anyways. Sorry I got off the topic. Lonnie

 

[lonnie]

i, I hope things are going better. I am 68 and have not gone through menopause as far as I know. I had a hysterectomy in my early 30's but they left the ovaries. I can't tell by the "monthlies but no hot flashes yet. YEHH!

Once I had the paramedics here at the house. I had two seizures. One of the paramedics said "That didn't look like a seizure to me (guess what he was a former student of my husband) I wrote a note complaining to the head of the paramedics. I complained to my Dr. He wrote out a note that he had been my neurologist for year and I did have epilepsy and was on two different anticonvulsanta.

I got a note of apology back from them.
I don't know if they have been here again. Accept for acute falls where they have finally conviced me I have always refused to go with them.

Good going. If it would stop raining I would like to be out in my garden again. Lonnie

 

[lonnie]

Looks like I got on the wrong thread. Having been gone a long time I am just trying to figure this out again. Someone was talking about menopause with epilepsy and an incident with someone in the hospital told it was not a seizure. I don't know where that thread is. There was also a thread talking about wheather or not it was a problem to take meds previous to surgery. my posts seem to go to the wrong threads. Lonnie