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temporal lobe resection
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An_200734 posted:
just finished my temporal lobe resection surgery. I would like to know what i should realistically expect in moving forward. I would like to hear from anyone who has or anyone knowing someone who may have had this surgery
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dancer86442 responded:
We have a member who had brain surgery. I will contact him & let him know you are here. Keep watching this discussion.

Love Candi
 
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morgeenstern responded:
Hi Anon:
What lobe did you have removed? I had my right lobe removed I would love to help you. What can you expect. That question has a really big answer. A lot of it is really neat. Aron I would be lying if I told you that you won't have any problems. HOWEVER they are not something you can't deal with. I said some really neet things. Let me tell you al little about myself. I am a geek. I design logic systems that make machines talk to robots. I love programs like How It's Made. I say this so you know how I look at things. One day I remembered a phone #. I asked my mom if she knew what it was too. She pulled out this really old personal phone book and she told me it was my phone # when I was 5 years old, I am 50. The Dr's at the cleveland clinic told me things like this could happen. One day I passed up a old building. I went home and drew a picture of it clear down to the broken window. I was going 55mph. I could spend a day telling you things like this. I really can't do hard work like lifting heavy items. Don't do things that put a lot of pressure on the head. I can walk forever without any problems so you are not totaly disabled. It takes me time to remember peoples names. I have a hard time remember getting around town, I forgot alot of roads and intersections. My short term memory isn't verry good. I get confused when my entire family try to tell me diffrent things all at once. Anon I had my right lobe removed and it controls things like name face reconition, emotional control, some short term memory. and some other minor things. I have learned to deal with all of them. My family knows to ask me one thing at a time and give me time to answer before going on to the next question. I write down a lot of things so I remember what I was doing. I can wire up a control box with several hundred items in it, I just keep really good notes so I know where I am. I got a GPS and use it all the time to find where I need to go. As far as remembering names. I tell every new person I meet that it is going to take me time to remember there name and why, if they can't deal with that it is their problem. I take emotional control meds and will for the rest of my life. I see a psyc to help me learn how to deal with my feelings about the problems. Aron everything and every problem you are going to have can be overcome. It is entirly up to you and you have to admit you are having the problems and learn ways to help your self. Have fun with as much as you can. alot of people tell me they have a hard time remembering names too and I have a better reason than they do. I tell them I made a deal with the hospital and for 1500$ they will put the scar on there head. When I see someone who I knew for years and can't remember their name I tell them why and then I tell them if we did anything wrong together and are wanted to run. I tell them that the hospital knows it because they took that part of my brain and looked at it and they know who they are and what we did. Anon as I said I had my right temp removed and if you had the left remove you are going to have a lot of the same problems but the left controld diffrent things. Please Please let me know. reply to this so I know what lobe you had removed. Ask your questions and I will answer them the best I can. Now for the best part. The surgery worked. I had to give up my job at the ice cream store because I can't make shakes anymore.
Good luck and I hope it works for you. Do what the Dr's tell you to do and keep a very good log of every thing you have that concerns you. I will keep an eye on this and will keep in touch. I advise people at several hospitals and will do every thing to help you I can
Bob
 
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desi108 responded:
Hi Anon,
I am contemplating surgery. I know you don't have any long term results yet but I am interested in how you made your decision. I am a teacher and am afraid of not being to be able to continue my passion.
 
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morgeenstern replied to desi108's response:
HI:
I wanted to reply to this even though you asked Anon. I had my surgery 6 years ago and I can do my job with little problem. As I stated in my reply to Anons question I do have a SLIGHT problem with short term memory. It can be overcome with a few little tricks. My wife is a teacher so I know the things you need to do. Just keep good notes on your lesson plans. When I say I have short term memory problems I am talking about things like writting a 600 line comp. program. I think you will be just fine. I do know this. The diffrent lobes in your brain do diffrent things. I had my right temp. lobe removed so you should talk to your Dr. and see what the lobe you are looking at and see what you can expect. As far as what made my mind up. I didn't really have a choice. The next seiz. very well could have killed me. I only ever had 6 and the shortest one was around 47 min. long.
Bob
 
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meredithc18 replied to desi108's response:
Hi Desi,
I am replying to you because I am also a teacher who had my right temporal lobe removed June 1, 2010 and it was the best thing I ever did! I fell off a horse March 2003 and started having sz. right after. No medicine worked, I tried them all. I was in the hospital for extended testing multiple times and finally was given the "all clear" for surgery. My last sz. was May 27, 2010 and I am now able to drive again. I still take medication daily but that is ok. I do have short term memory problems, but you learn to adjust. I realize that this is better than having a sz. in front of my classroom and having my students see it. You take a lot of notes, make lists, make sticky notes around the room. Nothing an "older person" might do. Don't think of brain surgery as "I wake up and I don't know my family, I don't know English, I can't walk/talk,etc." I thought that, but it isn't true. I can still play the piano, I remembered.
Do it, it was the best thing!
 
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meredithc18 replied to desi108's response:
Desi,
I am responding because I am also a teacher. I had brain surgery (right temporal lobe removed) on June 1, 2010 and it was the best thing I ever did! I am driving again and back in the classroom with no problems. Don't be scared of the surgery........it isn't what you think. I had all summer to recover and there isn't even a scar! yes you will have short term memory problems, but that is why we are such good note takers. You make lists, sticky notes, etc. You adjust and make do. I play the piano and I still remember it. Brain surgery was the best thing I ever did!
 
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desi108 replied to meredithc18's response:
Hi Meredith,
Thank you so much for your response. Even since my last question here, I've had another seizure. This time, during my evening job at the science museum. Luckily, the group of Scouts I was working with were paying much more attention to the project I had just given them than watching me fall to the floor. Thank goodness there was other staff nearby that noticed me. I am sick of living this way. I can't imagine this happening in fron of my class of 2nd graders. It would be so traumatic for them. It is looking more and more like surgery is going to be the way to go. I've also exhausted all the medications available. Thanks for your input. You're helping to make this a slightly easier decision.
 
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wahoo60 replied to meredithc18's response:
I will be helping a friend, who is having same type surgery. During first few weeks at home and in the hospital any advise on what I can do to help with his recovery process. ANy tips on things you did that helped to make your recovery more comfortable in the hospital and at home. Also, did you do things besides note taking to help with short term memory.
 
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dancer86442 replied to wahoo60's response:
Hello wahoo60, Hope you are still w/ us. I just got an email from Angie who has had brain surgery. She hasn't been feeling well & has been unable to respond to posts. She is now Better & will hopefully give you the advice you need. Hugs to You for being there for your Friend.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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saxofone1 replied to wahoo60's response:
Hi wahoo, love your screen name!!!

Candi emailed me about your concerns. I've been dealing with a respiratory infection for about a month and simply had no energy. Lost some weight too. Time to shop.

I had a partial right lobectomy in '02. I had a bout of amnesia for a while which delayed my returned to the classroom. At that time I was working at an elementary school with a pre-k class.

I started working with kids in the mid-80. They never had a problem with my ep. I broke it down to them using words that they understood. One kindergartener was concerned that I was contagious whereas another was concerned that a seizure would hurt me. Once I answered their questions, things were okay.

How to handle post-surgery is an individual thing much like the seizures are. What helped me was to get away from my familiy who jumped at every move I made. Idefinitely kept a notebook on all concerns, questions, or anything that was out to the ordinary for me.

Don't treat your friend as an invalid. That is most annoying!!! Whatever your friend can do for him/herself that does not bring damage to hte healing side of the skull or risk one's health, PLEASE BE SUPPORTIVE.

Do be aware of anything that you feel is out of the ordinary. Keep your own notes. Possibly go to the next appt if you can. outsiders views can be very helpful.

Was your friend able to get a PCA for the heavy work around the home. You know, mopping the floors, doing the laundry. Ctivies that require lifting or bending. I had one and she was of great help. Visitied me twice a week until I was cleared to do it myself. I think it was shortly after the staples were removed. Was I happy to be able to clean my apartment again.

The amnesia I experienced did delay my return to work It was my decision to extend my LOA. When I fetl comfortable returning to work, I had already released my position at the school. I was then invited to do some volunteer work at a previous school site until I found a new position.

That was a great move on my part. The kids were my daily therapy. I was very appreciative of the teachers who were aware of my ep and surgery cuz they gave me the room to do the work that they knew I could but stayed distantly on the alert in case of an emergency. The kids did the same.

Despite that period of amnesia, I think I had a fine recovery because I stayed active. I found something productive to do that didn't threaten the surgery outcome. I was also surrounde by positive people who gave me encouragement to keep moving forward but reminded me that I didn't have to do everything at once. I also had a great medical team in my corner.

I'll get in touch with a girlfriend who had the same surgery as me a few months earlier. I met her throught my epileptologists. She walked me through the entire procedure.

Yes, Candi, I'm talking about Dana(aka clarinet2). She is still recovering from her respiratory infection too.

Hey Wahoo, click my pic and read my story. I think with love and support your friend should be fine. Thanks for your concern.

angie
 
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saxofone1 replied to saxofone1's response:
Hi Wahoo,

I must make an emergency visit to my mom's. She doesn't bother with computers and I have no laptop. I'm pretty basic when it comes to technology.

It is so strange how my family depends on me for strength when some of them doubt my abilities cuz of my ep.

Family is a strange group that we didn't pick.

I will check on you and your friend as soon as I return home. It should be later this week.

angie
 
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clarinet2 replied to wahoo60's response:
Hello wahoo, Angie contacted me and I agree with her response 100% about documenting and watching carefully during your friend's recovering. One piece of advice is to let your friend get rest and help your friend realize that we just do not jump back into our normal routine after surgery. Just a simple trip to the grocery store with my mother several days after arriving home made me very tired and triggered a seizure which is very normal.


It takes time for our brains to heal and it is common for seizures to happen during the 1st few months after surgery so help your friend not to get down if a seizure happens after surgery


Simple things like good movies or an easy card game helped me to get my memory going. Give yourself and your friend inspiration to take this recovery one day at a time. Patience helps to the road to recovery.


Best wishes and bless you helping your friend. I had a wonderful mother helping me after, but we started to drive each other crazy after about one week and it helped to have an old friend from high school come and visit.


I did return to work after about a month of recovery, but I started out working half days to get myself back into the routine before going back full time.


Dana
 
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saxofone1 responded:
How are things going for you, wahoo?

I do hope that the info that we have shared has been of use to you.

Drop us a short note when you can.

angie
 
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desigina responded:
Hello,
I hope that you're doing well. I'm trying to make the decision of whether I should have the same surgery or not. It's planned to be scheduled for June. how was it for you? Was there a tremendous amount of pain?


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