right frontal lobe surgery-may have it very soon!

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This ? has been asked before, but I'll try again. not much response to the last person who asked. i guess not many people have frontal lobe surgery. my 25yo daughter may be a good candidate for it. i want to know more about the effects of this surgery on others. she had a brain tumor as a baby and had radiation treatment and surgery at that time. she is cognitively impaired due to above, as well as the epilepsy and high dose meds. we're so worried. it's such a gamble-will her functioning improve or get worse? there will not be a definitive answer to this dilemma, i know. other people's experiences would be helpful. thanks

Comments

I had Right Frontal lobe surgery October 2007

Submitted by Wendy07 on Tue, 2007-12-04 - 16:10

Hi, I understand how hard it is to find information from someone in this situation as I tried to do the same before my surgery. The first thing I did was to find the best place/surgeon to have this surgery. I actually went out of state to The Cleveland Clinic (Ohio). The surgeon there is very experienced in Frontal lobe surgery. As I found out, this is not the most typical surgery and is much more difficult than say TLE. My insurance covered the Cleveland Clinic. I had two surgeries. One, to put the grids (electrodes) on my brain because nothing showed up on EEG, the second surgery to remove the electrodes and remove the part of the brain causing my seizures. I cannot say if her condition will get better or worse, you will have to ask the surgeon that. A lot depends on exactly where the seizure focus is located. Again, I would find the best surgeon you can, then call your insurance to find out if they are covered. I didn't think our insurance would cover out of state hospitals but it did. They wouldn't cover the Mayo Clinic which would have been my first choice since they are ranked #1 in neurosurgery by U.S. News and World Report. Then I went to the Cleveland Clinics website and actually found a small section dedicated to FLE surgery. They were also closer to our home than other hospitals in US News and World Report. The surgery itself was NOT NEARLY as bad as I expected. I think everyone thinks the worst when they think of "brain surgery". I think I had such horrible expectations that I was not let down. After the first surgery I had headaches for 2 days and was nauseous from the pain medication. the second surgery wasn't as bad because they went in through the same incisions. I went home 3 days later. I am now 34 days seizure free, but will be on meds for 1-2 years (that is pretty much the standard). The surgery was definitely harder on my husband as I imagine it will be for you. (he also had our 2 year old to take care of). Me, I was fine. We had a lot of support and people praying for us which helped tremendously. Please don't hesitate to ask me any questions. I will try to log on a couple times a week. We created a website on CaringBridge.com that talked about the whole experience. Seizure freedom is the only acceptable outcome, Wendy

Re: right frontal lobe surgery-may have it very soon!

Submitted by mamasaw on Fri, 2008-06-27 - 18:07

My daughter had left temporal lobe surgery on March 5 this year, and has been seizure free since. She's doing wonderful. She would do the surgery again in a heart beat. She feels so much better. Good luck

Hello I have left temporal

Submitted by Lilmika on Wed, 2018-02-14 - 12:52

Hello I have left temporal epilepsy as well and I'm getting phase 2 done now they want to add more of the electrodes so I guess I'm must more damaged they old and scared. How much of your left side needed to be removed and if u got it done yet how is everything? I hope your strong and healthy and can help me out