ADVERTISEMENT
ADVERTISEMENT
LaLa1106

Right Temporal Lobe Brain Surgery to stop seizures.

Hello, My name is Lee. My Daughter, who is 36, started having seizures abou 3 years ago. She has been on many medications, but they do not control her seizures. That is when the Doctors considered her for brain surgery. First, the Doctors tested her on everything to see if she is a good candidate for surgery. Well, it turns out that she is a good candidate. My Daughter's name is Lori. All of her seizures are coming from the right temporal lobe. They have given her a 65% chance of being seizure free. The problem is this... my Daughter is really scared that it will effect her memory even more, or worse, effect her emotions. I would like to get feed back from anyone that has had this surgery. I would like to know the pro's and con's of your experience. I would greatly appreciate this. I am very concerned for my Daughter. 

Thank You!!

Concerned Mom!

Comments

Re: Right Temporal Lobe Brain Surgery to stop seizures.

 

Hi there,

 

I had surgery in the right temporal lobe three years ago.  By the time I got into have surgery I had five different types of seizures.  There were some complications with my surgery and I ended up in the hospital for three weeks.  I lost some of my vision and most of the feeling in my left hand. Althought, I am still glad that I did it!!! I am on half as many meds and my seizure are completely under control!! The complications that I had could have easily been avoided!!  My sugestion to you is that your daughter should go ahead with the surgery, however someone should be with her as often as posible, and if she starts to get really sleepy or is not acting normally, let the nurse know, and if he/she does nothing about it and you are still concerned, tell them you want to see a doctor RIGHT AWAY!!  My intention is not to scare you or your daughter from going through with the surgery, I simply want to let you know how to help amake sure that it is a good experience.  One that she will be happy she did for the rest of her life!!!

 I wish you both the best.

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Hi , I had left temporal lobe surgery and partial left hippocampus removal in 2006, and to date have been seizure free. I tried every medication under the sun but nothing gave me complte control over my seizures, I was having on average 4-5 seizures a month with no improvement in changes to medications.At the time of surgery I was taking 14 anti epileptic tablets per day,and because I had been taking these medications for 44 years the withdrawal period is very slow but I hope to be completly off my medications by mid 2009.   During the phase of going through all the testing I had a test called an fMRI which at the time was very new, this test  is non invasive ( like a wada test is) but can give similar results,it is worth enquiring about this test if your daughter has not been through this stage yet.   My surgeon gave me a 70% chance of been cured(no doctor had used the word cured before) a 20% chance of the epilepsy been improved but not cured and a 10% chance of no change or worse off. So basically I had a 90% chance of been better off ( as far as seizures are concerned),than I was which were very good odds.  I went through all the worry about will I be the same will i be able to walk,talk,think,etc etc, which was why before I had surgery I had an enduring power of attorney drawn up in case I was unable to manage my affairs should something go wrong in surgery. However it must be an "enduring" power of attorney as a normal power of attorney becomes invalid once something happens to the subject persion.  Another good idea would be to get a field vision test done before surgery this is for your periphial vision and can then compare it with another test about 6-7 months after surgery as the eye muscles need time to repair themselves. I was advised not to attempt to change my prescription glasses for at least 7 months after surgery giving my eyes time to heal.   The brain has no feelings so you dont feel a lot of pain ,apart from a  good headache from been cut open. I was in hospital for 7 days after my surgery  and off work for a total of 7 weeks. I chose to have my surgery done at a private hospital, so much better in every way than our public hospitals here in Australia- better care, quieter, option of private room it all helps in the recovery time you are in hospital. You to can greatly assist her, simply by been there for her,before  going into hospital and supporting her decision,(despite your fears), if you can visit her daily while in hospital, and again when she goes home to help her out. If they use morphine in hospital to help manage the headaches(like I had), she may get teary very easily even for a few weeks once she is home ,it takes time to get out of your system. At the time  I felt that my surgery would not have been possible  if I had not recieved the support I got from my parents, but I was unable, at the time to understand that it was still the effects of the morphine wearing off.   My surgeon described the surgery as been simpler than having your appendix removed. I was fortunate in one way, I found out on the Thursday I was compitable for surgery and was booked for surgery on the following Tuesday, so I only had 5 days to worry once I knew I was compitable.  Originally,when  I was going through the tests to find out if I was suitable for surgery, I felt there was no way I was going to let anyone cut me open and play around with my brain-all that changed once I met my surgeon ,he answered every question honestly and re assuringly . Stay positive and bright  , if your daughter is a suitable candidate I would STRONGLY RECOMMEND she has the surgery it is a Life Altering procedure, she will be able to drive a car,after a qualifying period, go swimming without fear of having a turn just to name a couple of things people with epilepsy cant do. Good luck and I hope the surgery is sucessful.

                                                                   Aussie

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Hello

     Well I had brain surgery 3 months ago it was a left temporal lobe and so far so good.  For me you have to stay positive, I have had seizures for 44 yrs and I don't regret one minute having my surgery. I was in the hospital for 4 day and my surgery took 6 hrs and as long has you have family and friends that are there for you and you have great doctors you are better off having the surgery then suffering any long. What do you think?  Best of Luck

Lynn

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Hi Lee. My name is Anna and I am 27 years old. Just like your daughter my seizures statred  3 years ago as well right after I turned 24. Just like your daughter my seizures were caused by an unknown source and my medications are not working. Last year I was considered for surgery and I just recently had surgery done to my Left Temporal Lobe. I was told the same thing that was told to your daughter. i am a perfect canditate because of my age and basic health. I just had my surgery last week (November 4th) and so far I am doing ok. I am still in a litte bit of recovery and I have a huge hole in my head with my stitches and should be getting them off next week.  I have been told that my surgery was very successfull and since i was always considered a "perfect" candidate my recovery will be perfect. If you want to you can send me an e-mail or send me a freind request and you can tell me about your daughter and i will keep you posted on my recovery.  Best of luck! You can even have your daughter keep in touch with me since we are only 11 years apart.

e-mail ahardway81@msn.com.

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Like you, I'm a mom who has dealt with my daughter's e for awhile now. My daughter is 27, has had e for at least 10 yrs and no control with the meds. She had left temp. lobe surgery on March 5 08 and is doing well. No szs so far. She did not lose any vision that is noticeable. She was only in the hospital for 3 days. It took about a week on pain meds, then tylenol after that. We agonized over the decision. We were scared to say yes, but in the end, we believed we had to try. We trusted our drs. I met another mom in the hospital who's son had the surgery earlier than my daughter. He did great. That was kind of the deciding factor for us. We met and talked with someone who had been through it.
Her memory has never been very good, but we do not see any change or worsening of her memory. She is SO MUCH HAPPIER. It's all about the quality of life. She has the hope of a future without these disabling szs. We know there is no guarantee, but, we are so thankful we said yes. She started driving again for the first time in 3 yrs. 2 weeks ago. My suggestions are:
1. Make sure you trust the surgeon. Ask to speak with some of his/her patients who have had this surgery. They should be very understanding of this.
2 If you decide to go ahead with the surgery, make sure you stay ahead of the pain medication when she comes home. Someone will need to be with her all the time for approx. a week. (That's what we did)If they say take every 4 hrs, make sure you take it every 4 hrs. If you wait, the pain can get pretty bad at first, and it takes awhile for the meds to kick in.
3. I'm sure you're wondering about shaving her hair? It's not as bad as you think. They only shaved a small area, right along her hairline. You cannot even tell she had surgery now. Trust me, that part is not even bad at all.
4. The pain at first is bad, but not as bad as she thought it was going to be. Use the pain medication, like I said.
5. As far as emotions, I can't speak to that because your daughters in on the right side as Carries' was on the left. But, like I stated earlier, Carrie is sooooo much better emotionally than before. If nothing else, we would take that over everything else. You just want what's best for you kids, no matter their age.
Good luck, I hope it all works out for Lori.
I'll be praying for you and her for what is best.

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Hi Lee, my name is Katy and I'm 22 years old. I actually had left frontal lobe surgery, but thought i would share my experience of brain surgery in general. My surgeries were about 6 1/2 years ago and have been seizure free ever since. I was diagnosed with epilepsy at 15 and had complex partial seizures. My seizures got progressively worse and more frequent very quickly. I went through 6 different meds. in a 7 month period with none of them completely stopping my seizures. The doctors told me then that when a person my age goes through that many meds. in that short of time with no real improvements that surgery would be the next option. I had a wada test done and from that they said i was a strong candidate, but would still have to have a preliminary surgery to make sure they could remove the  lesion that was causing things without interfering with my motor function or memory and so on. I had this first sugery 4/8/02 (a week after my 16th birthday) which entailed taking off the top front left of my skull and placing a grid on my brain to map out and monitor where my seizures started and spread to. They did a bunch of tests over that first week and concluded that they could do the second surgery to remove the lesion. That surgery took place 4/15/02 and i stopped having seizures that day. I was in the hospital for another week for recovery. I don't remember a whole lot of pain after leaving the hospital, just more waiting for the swelling to go down. One of the down falls was i developed a staph infection from one of the first two surgeries and had to go have an emergency surgery about a month and a half later. I was in the hospital for about 6 days that time and had to be on antibiotics for two and half months after. Anyway, i never had any memory loss, but i have noticed along with all my family that i really don't have the motivation or drive i used to. It didn't seem very noticeable at first, but everyone says i'm not the same Katy i used to be. I'm not a completely different person, but i know i don't have that go get 'em attitude i used to. Best of luck to your daughter and your family. Let me know if i can be any more help.

Re: Right Temporal Lobe Brain Surgery to stop seizures.

Hi Lee; My name is Tracey. I had the surgery done in 1997 the same area. After having seizures fo 30 years of my life, I am now seizure free for 11 years now. I would highly recomend your daugher to ge it done. I was told if I didn't get it done, it could turn into a tumer as I got older. On the 14th, I was at a dinner, & there was a neurosurgen speeking. saying that now, when the surgery is perfomed, they only take out the part where the seizures start. They don't take out the whole lobe. you or your daughter can email me & talk. I would love to give her comfort in doing this. Tracetheangel@bellsouth.net