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Lobectomy

Hello, my name is Laurie and I have had epilepsy for 14 years. My seizures have never been controlled through medication and my doctors are currently considering brain surgery to correct my seizures. I am already going through the pre-surgery tests and am waiting for the results to find out if and when the surgery will happen. I am looking for anybody who may have been through this surgery or may have some insight on the experience. The doctors have already told me that my chances at the surgery are pretty good. However, I know that they tend to "sugar-coat" things for patients. I would like to know more details of success rates and recovery issues after the surgery. Anyone who might be able to offer some advice would be greatly appreciated.

Comments

Re: Lobectomy

Hi I had left temporal lobe lobectomy in March 2006 and have been seizure free ever since. Your doctor should be frank and honest with you regarding you chances of success. I was given a 70% chance of a cure, 20% chance of reduction in seizures and 10% chance of no improvement or worse. So I had nothing to lose really,as I had a 90% chance of been better off.,Having said that every case is different and chances of success will be different with every patient. I was in hospital for 1 week after surgery and at home recovering 6 weeks, I was off work a total of 7 weeks. My eyes took a while to adjust after surgery, and it is reccomended  that you do not change your glasses prescription for at least 2 months after surgery,otherwise when your eyes recover, you will have to change the prescription again.  You will come through the surgery a lot better if you have a family member / friend who will stay with you when you come home and do things to help you, you are best to do little the first two weeks when you come home. Enquire about a Fmri test, this is a relatively new test which is used to see what side of your brain is responsible for which functions you perform and is  less invasive than a wada test. It is normal that you will have to go 1 year without seizures after surgery before the doctors will start to reduce your medication. Having surgery is not a decision to be rushed,so think it through but it is also a golden oportunity to improve your life if surgery is possible. Good Luck

                    

 

 

 

Re: Lobectomy

Hey, thanks so much for the helpful info. My doctors have given me the same odds as you on my surgery, so I'm pretty positive about the situation. I am definetly not rushing anything, however, at 28 years old I am ready to (possibly) live a normal life for once. I also have a beautiful and healthy eight year old daughter (Destiny) that I cannot support. She lives with her father, four hours away. I am ready to put my degree as a Medical Asst. (which I can't use due to the seizures) to use and make Destiny proud of me. I am ready to live a life as a hard working mother, who can actually support her daughter. I know that the surgery doesn't guarantee that this will be my future, but like you said, I have nothing to lose. Thanks again for you comments, I wish you the best!   

Re: Lobectomy

I had the surgery done in JUne, 2007.   I have had no side effects and no siezures.  I am almost back to living a normal life and I have no regrets about doing it.  It is a hard decision, and the only thing I could say to help you out is to have a great attitude about it.  I was walking around two days after the surgery and to this day my doctors are impressed on how my attitude helped my recovery.  I had no headaches or anything, I was to excited.  If you do go in for surgery ask the doctors for some pictures, I have great pictures of my brain.  Good luck, and don't be scared, always look at the "bright" spot at the end of the rainbow, it is there.

Re: Lobectomy

I had this surgery a little over 5 years ago and have detailed the experience at the link below:

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

Kevin 

 

 

Re: Lobectomy

Hi Laurie:

I had a left temporal lobectomy last July after living with uncontrolled seizures my entire life. It is one of the best things I have ever done for myself as I have been seizure free since the day before the surgery.

As aussie suggested, if you can have someone stay with you for the first little while post-surgery it is definitely helpful.

Yes the prospect of surgery can be daunting, but if you have a doctor who takes the time to explain everything to you, including the risks, then it is well worth giving serious consideration to.

Best of luck, whatever you decide.

 

Re: Lobectomy

Hello Laurie, My name is Scott. I just has my Right Temporal Lobectomy about 5 months ago 11/12/2007. I had seizures from 18 months  till 4 yrs old. They went into remission till I was 17 yrs old. Then came back for 20 straight years till I was 37. Which is when I had my surgery. I was having about 2 Tonic Clonics a day. As well as several simple partials and complex partials scattered through out the week. Since surgery Ive only had 1 Tonic Clonic due to a high fever. No complex partials. And my simple partials continue to become less and less frequent as time goes on. It is a 12 month healing process of which I am only at the 5th month so I continue to improve as time goes on. I saw someone on another post make the comment that attitude is huge in the way you heal from the surgery. I totally agree. I have been enjoying life for the 1st time in decades and it certainly has helped in my healing process.

Laurie, Good luck in whatever you decide. And if you do go through with it good luck with the surgery as well. Take care Scott.

Re: Lobectomy

Hi Laurie,

Re: Lobectomy

Hi Laurie.  I had a RTL in 1990.  I was like you - my seizures could not be contolled by medications.  My seizures have stopped completely since then.  However, my emotions are uncontrolable.  I have no understanding of them or how to control them and often wind up in turmoil.  I don't want to discourage you.  For the pain of the needles that freeze your head and for the headaches you get during and after the surgery, if it controls the seizures - all the short-lived pain is WELL WORTH IT.  Just make sure you are well informed and know what your outlook AFTER the surgery is, not only with epilepsy, but emotions, body functions, etc.  I function normally, except for my emotions.  If your seizures are uncontrolled and surgery is a good outlook, I'd say go for it.  The pain is VERY SHORT LIVED and well worth it.  If you want more information, let me know.

Jesus Is My Rock, Music Is My Sanity. Sheri L. Adams

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