Surgery/Support for making a descion

Information

It is abig descion to have surgery or not. We can all share the questions we ask ourselfs and doctors and the challanges we have experienced.

Members: 36
Latest Activity: May 22

5 members like this

Discussion Forum

Surgery/Prognosis

Started by Josh Jan 25. 0 Replies 0 Likes

I am posting something for a few reasons.1. If there is anyone who is considering the option of surgery, more so the removal of temporal tissue(s), I am willing/able to discuss the details of these…Continue

I am now a new candidate for surgery...

Started by Crystal caridad negron. Last reply by beetle Dec 14, 2012. 13 Replies 0 Likes

I was just recently told that I'm a candidate for surgery in October when I had to do a five day EEG. I have to go through four test before everything is official and so far I've done two. I've had a…Continue

I don't know what to do?

Started by Marissa Conciardo. Last reply by 1w6afyorchpxi Feb 29, 2012. 10 Replies 0 Likes

I was told I am a sergical canidate but they want to do one more thing. They want to put holes in my head and put those EEG probs in there so its more persice. I don't know if I want to do though I'M…Continue

Corticol Dysplasia Surgery

Started by Nancy Smith. Last reply by Lauren Jan 25, 2012. 6 Replies 0 Likes

Please forgive me, I am new to this and dont quite know how it works. My daughter starts her Phase 1 in January. My understanding this is to see if she is surgical candidate, primarily to make sure…Continue

View All

Comment Wall

Comment

You need to be a member of Surgery/Support for making a descion to add comments!

Comment by ejl1558 on December 9, 2012 at 9:58pm: Jimmy, I just want to say after the fortunate result of my surgery in 2000, you just want to see other people experience the same result. Thank you for showing your appreciation by getting involved with other people with epilepsy. This Tuesday is 12 years since my surgery and like you, I would go right back if I had to.

Ed

Comment by Jimmy on December 9, 2012 at 9:24pm: Hello everybody. I use to be a member of efa.org a long time ago, but kind of got out of the swing of it. Graduated college, got married, started my career job, etc... Now that my life has settled down a bit, I am getting back into the grove.

I first stared having seizures when I was 5 and they would not stop. By the time I was 17, I was having an average of 20-25 seizures per day. I finally made the decision, not my parents, that I was tired of living my life like this. I wanted to have a brain surgery and I wanted one now.

My seizures were effecting my left temporal lobe. So in the summer of June, 1997 (when I was 17) I had my left temporal lobe and hippocampus removed.

The recovery was rough for me, but I made it. I am now seizure free and off all my epilepsy medication. I have given many speeches about my seizures and recovery to students and patients with epilepsy. I am a very happy person now, push my self to stay motivated and am dedicated to helping people with epilepsy. I currently volunteer at a hospital in the Epilepsy unit and get to work with the patients one on one.

So if you have any comments or questions please feel free to let me know. I had many side effects from the surgery, but would do it again in a heartbeat. Let me know if I can be of any help to you.

Comment by TravisEd on April 1, 2012 at 5:55pm: I may be in the wrong group, but this seems like the best for those I am in..

I have a question that I have had rattling around my head and can't answer myself.

For those of you (like me) who have had a resection (Anterior Temporal Lobectomy Left Hemisphere in my case) did you need any counseling?

A longtime friend tossed me the question last week: "What are you going to do if you remain seizure free?" My current answer is I have NO bleeping IDEA.

So I guess my question is did you have problems adapting to seizure free after a long life of having seizures?

--Travis

Comment by Paul J. Casey on January 15, 2012 at 3:56pm: Wishing you luck.

Comment by Robin Link on January 15, 2012 at 3:04pm: Paul the doctors meet on tuesday. One of the doctors is alludding they are recomending resection

Comment by Paul J. Casey on January 15, 2012 at 11:16am: Robin, I hope everything went well on the 10th.

Comment by Robin Link on January 15, 2012 at 10:32am: Paul
I am so glad to hear such positive outcomes. Judy it sounds like you are a strong person and good mom

Comment by JUDY L CHERNAVAGE on January 13, 2012 at 11:04pm: Paul, good for you. I wish you well. I almost cant remember her going 1 day without a seizure, but i dream of it. Lila is ready and wants to get better, she already has short term memory loss..its pretty severe and is already on meds for her mood so she already has the side effects that would be from surgery.

Comment by Paul J. Casey on January 13, 2012 at 10:53pm: I just had some of my rt temporal lobe removed on December 14th and I am already feeling great. First two weeks of recovery were very difficult, lots of anxiety and depression. But, now I am back to work and depression and anxiety is much better. So exciting because I haven't had any seizures since surgery and I was having about. Five a week in my sleep.

Comment by JUDY L CHERNAVAGE on January 13, 2012 at 10:34pm: My daughter is scheduled for surgery Feb. 20 for removal of the right temporal lobe. I have been going over a thousand times in my head that this has to be the best decision i can make for her. In the last 2 days alone 10 bad ones and probably 50 little ones and seeing her face turn blue and sleeping all day confirms my decision. I just would like to know how long the recovery would be, i have heard many different outcomes.