Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Surgery right temp lobe 07/10/07 I'm getting nervous

I have complex partial seizures. Surgery is coming up, and I have been doing so much preperation for it. The closer it comes the more nervous-scared I get. I am 29 living on my own but cannot drive, so getting allot of help. Just repeating what the Dr said, there removing a portion in the right part of the brain... removing. I have been told I may loose a little of my short term memory does that sound weird. He said I will probably loose it anyways in the long run down the road, I belive that. I want to know who else has had this surgery and how they felt afterwards, pain, any memory loses or changes, just some insight to what your thoughts were.

Comments

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Hi,
Congrates on the upcoming surgery. I have had a left temperal lobe surgery done back in November 1999; and may be able to give a bit fo insight to you in this area.
The surgery is a very invasive one to the brain, and you will have a good deal of swelling in the face aftetr the surgery is finished, as well as pain. The reason is that they put back in the scull piece that had been removed and there is no where else for swelling to go, then in the facial areas. Mainly the eyes and the temperal lobe area. You will have meds to relieve the pain and one thing I can advise, use some ice packs on your face to help take care of it. I sure did!
Memory is affected in some ways. For instance the doctor will come in when you are eating and ask you to name what things are. You will sit there puzzled because you will knwo what it is, but the word may be hard to get out. It does get better in time; trust me. It is NORMAL. Keep in mind the surgery is basically a shock to the brain so it will take time for it to be back to its normal self. For me spelling got kinda funny... I spelled words as they sounded... For instance the word conditioner, I spelled it condishiner.. it sounded that way, looked ok, but got embarassed when I looked it up in the dictionary. That has since gotten better.
Another piece of advice I can give you is to keep a sense of humor! It does help you through some rough and silly moments... even if they are not so silly immediately. One thing you may start to become is even more independant then you are now. You may have mood swings here adn there and that is all something you need to let friends adn family in the support network you have know about before the surgery. I went through it and it was a major headache for many of them as no one expected it.
I wish you the best of luck with the surgery and I hope all goes well. As for me, I had my surgery almost 21 years back, and I am totally seizure free and off all meds now.
Sincerely,
Munchkins mum

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

THanks for the info. My memory is a little rough in a way that it takes sometimes a while for me to say the name of an item. I know what it is, it just takes awhile to get it out. I hope the surgery doesn't make it worse.

Thanks for your support
Angie m

Re: Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervou

E Wye
Hi, I have exactly the same memory problems - I want to say something sometimes a word to describe a thing, an event or a place. It is always a simple word after I'm told the word and a word which I've always known in the past. It just seems so funny and sometimes exasperating not being able to search for the proper word. i'm getting use to it now and I feel as time goes on with quite frequent complex partial seizures in the right temporal lobe that my short term memory is getting worse. I'm on two types of medication, tried many combinations in the past and now I'm being assessed for surgery. Let me know how your surgery has gone. Best regards, Eile

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Hello- I had a right temporal lobectomy on March 1st- i'm 26, was scared as HELL right up until I woke up after the surgery and could barely remember them taking me into the operating room. And then when they said yea it's done I remembered having been in the operating room and such. I couldn't have believed better results if- as the Drs did of course- had told me so beforehand! The only thing I have some problems with are short term- as in VERY short term memories- like 5 seconds or less for some reason. About 5 mins later I will remember what I was told to do- (this happens mostly at work)and has never created a problem where I have not ever remembered something after waiting a few mins or just retracing my steps of what was said or done. I had some word finding difficulties before the surgery which I was always told could be from the meds and that still remains the same- sometimes I've garbled words because I've tried to say something too fast but no one has ever noticed- even if I say something about it. I have had NO seizures and hopefully will get my license back in August after 6 years! (I was diagnosed when I was 20) They wont take me off meds til March but oh well- what's one more year! So far so good and I'm sure you will be okay too- your face swells a little and your head will feel heavy the first week or so but after that you will just be chilling at home... Good Luck! I am the biggest skeptic I know and trust me I know how you feel- and trust me- it'll all be okay somehow in the amazing wierdass world that is neuroscience...

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

I'm glad your surgery went well and will be back driving again only a few months away. With my job people talk to me constantly, I don't want them to think I am not listening, and my memory isn't the greatest now anyways. So I don't want it to get worse. For being such a skeptic, i'm glad you still had the guts to go through the surgery.

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Angie,

I had this surgery in '03 and have detailed my experiences here:

http://users.eastlink.ca/~kehoe/

Kevin

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Maria

Hello,

I also have complex partial seizures to the right frontal lobe of the brain. My Dr. has been telling/prepping me about the surgery and I too am scared. I still have yet to be told if I am 100% getting it though. Angie has raised many of the same questions I too have. However she missed one. I know it prob. differs from one person to another. But, how long of a recovery time do you feel you need to get up and feeling back to yourself again?

Maria (age 24)

Re: Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervou

Hi, I had a Right Temporal Lobectomy in 01. It took me about 7 weeks before I started work again and did not feel 100% for a few more, but it was WORTH all of that and MORE. I wish I had done it sooner in life. I am now 40. I have been seizure free since then and now have a wonderful life. I would suggest having your incision sutured rather than stapled to reduce scarring. You can also keep triple antibiotic ointment on the incision as well to reduce the scarring.
I now run 2 miles/3 times a week, work 40+ hours a week and have no side effects from surgery. I will be thinking of you and wish you the best of luck.

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Kevin,
Hey, thanx for your insightful sight. I have a RTL tumor and TLS that suck!! They have been ongoing for 6+ years now despite tons of meds to control them. My docs keep adding and upping meds and my brain keeps seizing. I had some problems also with doctors, I got "lost" in a large university of doctors system, and kept ending up with the wrong docs. First, when I was 23, I saw a pediatric neurologist, which was okay until I told him I wanted to have a baby, and he did'nt know what to do with me, so he referred me. Next, I ended up with a neuro-oncologist, who would basically look at my MRI and say, "I guess I saw the spot everyone is talking about, if that little thing is it, it is really so small and hard to find." I remember thinking, yeah, when you look at huge cancer tumors everyday, i guess it is, but if it was in your head, I bet you would not be saying that. Finally, through a long process I ended up with an awesome doctor who got the ball rolling for me. I was set up for video EEG also, and I am glad to hear I am not the only one that took a while. The week before I was admitted, on all my meds at home, I had 4 seizures in 1 week. The day of admission, I had one at the hospital 1 hour before being hooked up (go figure), and then I waited.........! It was very frustrating. I will also add, my not so nice father, use to tell me that he thought that I faked my seizures for attention, so while I was laying there in the hospital, having no seizure for 3 days, those thoughts were rushing back!! Horrible, I know! Anyway, after all the meds were finally stopped, partly with my help (by not taking all of them), the night of day 4 I had one seizure. It was on a Saturday though, and the doctor wanted an Ictal SCAN and the hospital did not do them on weekends, so I had to wait. 5 more seizures on Sunday, and then Monday came, and finally we were able to do the scan, and so my meds were restarted. A total of 10 seizures from Sat. night until Monday Noon, when they restarted my meds. As you know, a crappy way to spend the week, but I should be glad, guess it was shorter than your stay. So, now in one month, I am to go back for the WADA and psych test and then surgery is pre-set for end of august, early sept. I cannot believe it, and I only can hope and pray to be seizure free, which is what we all hope for by this right?!?!?!? Thnks for listening!
Stephanie

Also Angie, keep me posted if you get through sooner. Also, have you already had the Wada? How painful is it?
Steph

Stephanie, I have had

Stephanie, I have had everything but the surgery, I actually had 2 WADA test. I'm left handed, and seizures are on my right side. The first time I had the WADA, I got a little nervous, starting counting and then my voice was gone and half my body was frozen. I knew to expect half my body not to move, but not be able to speak. My seizures are on the same side as where I speak, and when I have a seizure I am unable to speak. After the WADA it all makes sense to me now. During the WADA I wouldn't call it pain, just "different" "intersting". What I didn't like was the preperation, a catheter up to find out to make sure when they put half your brain to sleep, that they were just putting half of it to sleep.

Thanks,
Angie

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Surgery is comming real close, those of you that had surgery how long were you off of work and how long did it take for you to feel back to normal.

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

I went through surgery back in '95. I went back to work part time three months after surgery. It took over a year for me to feel back to normal. Part of that was because I was having so many seizures for so many years. I was used to at least six or more a day when I was going into surgery as well as repeated status. I really just expected them to happen and then I wasn't sure what to do when they didn't and paranoid that they would. Then it just takes time for brain injuries to heal. I also, due to the seizures, had half of my body kind of asleep. The nerves took months of suddenly getting more sensation once I stopped having tons of seizures. One thing you probably have happen after surgery is you can not open your mouth more than a centimeter because of jaw muscles being cut so get soft or easily cutable food. eating hurts. My surgery was on the left side by speech centers due to the swelling I lost some speech, reading, and writing abilities it took about a month or more for them to come back.

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

START IT NOW!! before surgery, I forgot if surgery on the right side of your brain effects your memory or not.. but I started the habit of using NOTEBOOK PADS to remember things 8 months before my brain surgery, last summer. That just happend to go with the job I had. Anyway, when I quit that job, the habit of using notepads was still in use for daily activities, then it seemed like I couldn't remember anything without a notepad. 4 months after brain surgery i'm using them to make sure I remember everything, but it could be more making sure I remember everything. Basically I have a memory better than everyone else right now with this notepad, some of my memory brain could be growing back because of this... Just a thought... Thats also what Mayo clinic doctors told me to do when I already figured it out.

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Thats a good idea, since I forget quite often. I mentioned putting sticky notes all over the place to my brother and he thought I was crazy, because I forget now everything. I probably won't carry it around, but even if I write it down, its thinking about it a second time. That will definetly help.

I plan on making a little

I plan on making a little scrap book of my adventure over the past year of being a candidate for surgery and for this upcoming Tuesday's 7/10/07 major surgery. Also how I felt while having seizuress. I have been writing a few things down here and there and keeping some of the wrist bands and receipts and I am going to write about all of the meds I have been on since I have had seizures. Also about all the MD's I have seen throughout the past year, I don't want to forget. I am going to take lots of pictures, I have told my family to take lots. So 30 years from now I can look back and remember how I felt, and it will be easier to explain to others.

Thanks for everyones support, you have helped allot.
Angie m

Re: I plan on making a little

Just want to wish u all the very best for Tuesday Angie an to let u know i'll be thinkin bout you. Lookin forward to hearin all bout ur recovery. Take care, you are in my thoughts and prayers. LoTS OF LOVE Fiona xxx

Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Hi Angie,

I had the same surgery back in November of 2006. After all the worrying and preparation, everything has worked out great!
You can read my blog titled "Maybe one of the Lucky Ones" and see the things I started with, but I'm almost 50 years old and my seizures started sometime in my early forties. I went through all the drugs and the WADA tests and Pshyc evaluations, then finally the surgery and it was the best thing I ever did.
I've been seizure free ever since tne operation and I was out of the hospital in three days. I was back at work in two months, but it could have been earlier as far as I was concerned. You know the doctors by now I'm sure, and they wouldn't let me go back any sooner. I was in very little pain except for the first few days, but the drugs took care of that one. I'm still on some medications as my brain is healing, but they are taking me off more and more every month.
Don't worry about anything girl, and just know that you will be seizure free when it's all over and all your friends and family will still be there to support you!! Have a good life when you don't need to worry about those seizures anymore!!
Cozmovern

Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervous

Thank you, thank you,
I had surgery on the 10th, and starting staying at my parents, 3 nights after. I didn't realize that I would be able to feel as great as quick, I just get tired quicker with my walks, and take naps. But with everyone here, it has really helped me out, you all have helped so much. Also I have so much family and friends that have been at the hospital and at home. I got calls from many that I hardly here from, making sure that I'm ok, I think prayers stopped me from getting headaches.

When did you start mooving further, I'm not sure when I am able to walk a little further than around the block?

Re: Re: Re: Surgery right temp lobe 07/10/07 I'm getting nervou

I am so happy you are doing so well and that you are feeling better already.Take it slow. god bless you

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P