I have a lot of feelings and emotions going through me right now and I feel like no one really understands. I've been having seizures for 16 years now and I'm sick of it. Waiting for doctors to help you is a huge waiting game and my emotions and insides are having a hard time handling the wait. Got any suggestions?

I'm sorry. I understand how frustrating it is with doctors. I am going through my own private hell right now and sometimes I just want to scream because I don't really feel like anybody understands. I go online and have been getting support that way.

What kind of brain surgery are you considering? Are you on any meds right now to control your seizures? What are your doctors saying that is so frustrating? If you share more info, then maybe somebody here has experienced something similar and will be able to give you advice.

Hang in there.

Hi thanks for the input. It's really hard to find someone who understands in a way. I am and have been on meds. for 16 years, now it's Keppra and Trileptal. I don't know what the surgury is called but they do a more serious EEG on you by putting the electrodes on your brain instead of on your head. Then they take your meds. away and you need 3 seizures to continue. After that they decide if it can be fixed or not and remove the equipment and that part of the brain. The odds are pretty good, 80% to fix or decrease the seizures and about 15% chance that the seizure focus will over lap. The doctors are driving me crazy by playing a waiting game and changing things and not telling me. They don't realize that they are playing with someones life and putting it on hold. I have a husband and a little girl so I'm trying to run a family. Doctors don't think about things like that and the process takes about 6-8 weeks in the hospital. I'm trying to keep my spirits up. Thanks again and it was nice talking to you, you were my first. Hope to talk to you again soon.

Hey,

I went to the local epileptic foundation today and learned that they have a support group. I am actually going tomorrow. maybe your local EF has one. Something maybe you could look into? Hang in there. You will be okay.

Hi thanks for the input. It's really hard to find someone who understands in a way. I am and have been on meds. for 16 years, now it's Keppra and Trileptal. I don't know what the surgury is called but they do a more serious EEG on you by putting the electrodes on your brain instead of on your head. Then they take your meds. away and you need 3 seizures to continue. After that they decide if it can be fixed or not and remove the equipment and that part of the brain. The odds are pretty good, 80% to fix or decrease the seizures and about 15% chance that the seizure focus will over lap. The doctors are driving me crazy by playing a waiting game and changing things and not telling me. They don't realize that they are playing with someones life and putting it on hold. I have a husband and a little girl so I'm trying to run a family. Doctors don't think about things like that and the process takes about 6-8 weeks in the hospital. I'm trying to keep my spirits up. Thanks again and it was nice talking to you, you were my first. Hope to talk to you again soon.

Hey thanks for replying. I went to the doctor yesturday and today I finally got a date and time. SEPTEMBER 17 2007 at 7:30!!!!!! She had answered a coulpe of my questions I had. I feel a little bit better. Thanks for your support.

Hey Sk8ter,
I just wanted to tell you the test you were talking about where they wean you off your meds is called a long term EEG, I also had it done about 2 years ago. I also wanted to tell you I had the epilepsy surgery on Jan 5 of 2006 and I have not had any seizures since the surgery. It really saved my life. If you have any questions you want to ask me about it, I will check back and try to answer them for you.
Hang in there. It will get better.
God Bless.

Hey Krista baby,
Thanks very much for responding. Yes I have had video EEG's done may times and in October was the first time we have caught them on tape. My surgery has now been scheduled for September 17, 2007 at 7:30am. What kind of surgery did you have? Are you still on meds? My surgery is to put electrodes on the brain and take the meds away and I need at least three seizures and have a mapping test to make sure that my seizure focus doesn't over lap with my speech or memory. As long as it doesn't than they can remove that part and hopefully that will end my 16 year medical nighmare. Today's my 26th B-Day and I got a great gift, a pre-admission testing date and more information on what has to be done for this surgery!!!!! Does any of this sound similiar to yours? If so can you tell me more. I'm still a little uptight. I'm a mom of a four year old and I feel like I'm being selfish because this is going to take about 4-8 weeks in the hospital. Thanks for the talk I can sure use it. Keep in touch if you can it meant a lot to me and helped out.
Thanks again,
Sk8ter Girl 23

Hey Francila 121, Congats on your surgery and sucess on seizure free. I don't know what kind of surgery it is exactly but mine is on the left temporal lobe. I feel like I'm getting myself into something I can't handle anymore. The phone calls and appointments for getting everything done are just rolling in and I feel like I can't keep up with it. If you can get back to me please do. Nice talking to you again.
Sk8ter Girl 23

hi sk8ter is the young girl that had surgery in april remember me? they forced me to change my username. In case we dont speak again good luck w ur surgery and dont worry everything will b good. Its been four months for me and Im feeling better. I know u'll b fine too plus ur young like me.

Hey 030 Free,
Thanks a lot for the support, I'm at a state of mind where everything feels wrong. I hope I'll get to talk to you again. Keep in touch.
Sk8ter Girl 23

why u feel is wrong? What have the Neuro told u? How is the testing coming along?

Hey, Sk8ter! I'm sorry I haven't posted on here till now, we just got back from our son's surgery this past Saturday, and have been busy helping him recover! His pre-surgery MRI's came back so clear that they didn't have to do the 6-week EEG inside the brain testing. They just let us jump right in to the surgery after we got over being so scared about it!

They called his "lesions" on the back left occipital lobe, but when they got in there it was a benign tumor called a "gangliocytoma", I think. They are always benign, always cause seizures, and if totally removed, the seizures go away. He has been seizure free now for 8 days!

The doctors told us that the safest place to remove lesions or tumors is in the temporal lobe and the next safest place is the occipital lobe.

Also, we became really good friends with our EEG tech and she told us that if Brent had been required to have the testing like you're considering, that it most always goes well and is a very useful procedure for isolating the exact location of the problem before its removal.

The only other observation that I can add after going through this with Brent is that if anyone's neurologist ever says that their MRI shows a "small, insignificant, white spot" or two on their brain, don't let him blow it off as just a birth defect or something that can't cause seizures, which is exactly what ours did 3 years ago! If he had pursued this back then, Brent wouldn't have to go through the HELL of anti-seizure meds and trying to find something that would work and let him have any hope of feeling like his old self.

I guess I'm voting yes for your next tests and will keep you in my prayers every day that it will turn out great for you in the end!

Take Care,

Elaine

I understand all the emotions your going through. I had my first brain surgery 5/26/05 and was fine till having gall bladder surgery 1/16/07 and having several problems from that surgery, then they started up again. I will be also having another brain sugery in between having more face surgery for a large bithmark on the right side. Hope everything goes great on Sept. 17.

Mgoblue, I never thought that after being seizure free from ur first surgery, years later ur seizures could return!! How and why? What have the neuro said? I had my surgery only 5 months ago, surgeon said it was sucessful and no more seizures. I havent had any since thank God, but why did u if u dont mind me asking?

030free,I had the first brain surgery 5/26/05 and was fine till have gall bladder surgery on 1/16/06, woke up and new something was wrong. I side they did surgery on did not hurt at all but the left side really hurt, felt like all the muscles were torn & it was black and blue. I kept saying the left side and my throat was hurting, but nothing was done, till a week later and 3 different time to the ER and the third doctor looked in my throat and said that was the worse case of thrush he had ever seen , and also said that I was bleeding in to the left side. But when I was in the room after the surgery, I had my hand down by my side, I thought the IV was leaking but it was the right side bleeding out, the nurse said I guess the doctor forget to up a staple in and started laughing. The doctor never came back up to check. The thrush was so bad that I could not drink water, and it took so long with the med's to work that I guess it messed the brain surgery up. I found out a few months later another person that had gall bladder surgery by the same doctor & hopsital also had to have brain surgery but she did not have any brain problems before that. Just about 3 months ago another nurse that works at that hospital said that that doctor has been sued several times and lost every time.

sorry to hear this mgoblue, it mos of been very difficult n frustrating for u... I hope ur doing good and that ur seizures go away again, will u need another brain surgery?

030free, Yes I will be having another brain surgery, just waiting to find out the date, then I can schedule another face surgery. I told both doctors, they need to hurry up and get this all done, so I can go Man hunting!! LOL :)

well I know everything will b ok.. U sound like a strong woman w a positive attitude, so stay that way. Best of luck to u and keep us informed ;)

Brain surgery have had it and in some ways yes it's great. Before my surgery I could not go here there work it was just stay home thats it. No life I would have to say. Now it's I go here there volunteer workout at the gym have many friends. Yes you still get your odd days where things don't go right. Like memory is very bad the odd seizure I use to get 5-9 a day now its like maybe 1 a month. so it does help in many ways. I still see my DR. and keep in touch. Always think positive thigs work out. Limeridge

I have heard the same thing when it comes to having surgery as a child. My first was done at the age of 10. I don't know how this is going to go because the seizure focus is on the left along with the speech and memory. Told about 15% chance they will overlap. Hope for the best.

Hi thanks for the input. It's really hard to find someone who understands in a way. I am and have been on meds. for 16 years, now it's Keppra and Trileptal. I don't know what the surgury is called but they do a more serious EEG on you by putting the electrodes on your brain instead of on your head. Then they take your meds. away and you need 3 seizures to continue. After that they decide if it can be fixed or not and remove the equipment and that part of the brain. The odds are pretty good, 80% to fix or decrease the seizures and about 15% chance that the seizure focus will over lap. The doctors are driving me crazy by playing a waiting game and changing things and not telling me. They don't realize that they are playing with someones life and putting it on hold. I have a husband and a little girl so I'm trying to run a family. Doctors don't think about things like that and the process takes about 6-8 weeks in the hospital. I'm trying to keep my spirits up. Thanks again and it was nice talking to you, you were my first. Hope to talk to you again soon.


Hello I am new to this forum, I am 28 years old and have been having seizures of several forms, drop seizures, absentee, partial and complex partial... since i was 16
I have tried numerous medications, tegretol, epilim, neuronton, topamax.... in various doses and combinations..
I am currently on lamictal 300mg bd and kepra 1000mg b 1500 d.
I have over the past 12months been undergoing testing for surgery which sounds the same as yours, I have had 2 staying in a vtmu had elcetrobes placed on my head and promotes to have seizures that could be recorded with various other tests such as spect, eeg mri ect ect....
I am now going in to hospital in 8 weeks to under go surgery ...
In my surgery the will place electrobes on the brain and will recors activites whilst in a seizure and out..
they gather the information to use it to find a defined area of abnomatity as it is a large area all my vision memory and language is on the left side and the will be removing on the right.
After they have obtained all the information 7 days later they will remove the peice from information recorded.,,,,,, count down is on....
My odds at this stage are good....
I wish you and everyone the best best of wishes and I thank all of you who come to share....
I was once told a problem shared is a problem halved...
and it is certainly nice to read and be listened to by people that know what you are talking bout...
please all take care

Hi Everyone,

I would also like to thank everyone that has posted under this
thread.It gives me a little more courage.My neurologist feels as
if she has done all that she can for me,and is making an appt. for
me to go to an Epilepsy Center down here in Fl. called The Shand
Center at University of Florida.I am really scared,I went onto their
website and read as someone stated here that they put the electrodes
IN your brain instead of just on the outside of your head.And that you
will need a family member to stay with you,it could possibly be weeks
that you will be in there with a video EEG.
My problem has always been in the left temp. lobe and central location,
what I am so afraid of is making my memory worse than it is now,and
problems with speech.I am very worried and scared.
I would appreciate any additional information on this surgery and is it
painful when they inject that electrode into your brain?All of my seizures
are caused by my hormone levels and if they do not correct my hormones,
I just wonder if even a surgery may not be any good for me.
Sorry for such a long post,but again,any more info. will be much
appreciated.
Thanks in advance and take care, Sherri

hello ladies, I know is nerve wrecking undergoing all these test and counting down to surgery date, but everything will b ok. I had my surgery five months ago. I had a Right Anterior Temporal lobectomy and all I lost was my upper left quadrant eye vision for good, but Im adjusting w time, it was an exchange for a free seizure life. sherri the test your talking about is called a SPECT, yes they do a miniture surgery to open ur head and place them ontop of your brain which would b extremely helpful for the surgeon to locate the specific area of the seizure activity. It will b painful, but i believe 2-5 days later after they catch your attack u can have ur surgery. I didnt need that test but I still bought medical books and research all about seizure surgeries b4 I had my operation. I suggest u guys keep researching, keep us updated and definetely ask any questions to ur neuro, but dont keep any questions to urself. we want to make sure u guys r doing good and that ur knowledgable of these procedures. Best of luck ladies and I'll keep u on my prayers ;)

I recently had scheduled a few weeks ago. I have had various seizures as well (mostly complex partial and absent) and I have tried various medications as well as combinations of medications. It seems as if the medications would work for a while and then it would stop. My seizures come from my left temporal lobe. On the firt day of surgery they placed a grid on my brain, so they could monitor my brain wave activity. The 2nd day they found that the focal point was actually deep in the left side of my temporal lobe where speech and memory comes from. The seizures would start deep in the left temporal lobe and then spread across to the front. They said this was too dangerous to work on so the next day they took out the grid and stapled me back up. It was disappointing to find out but I just try to think positive and think about the bad things that could have happened if they did decide to go w/ the surgery and that makes me feel better. So now I am exploring other options. They are telling me that they think the VNS or RNS is the only way to go. I did research and found out that the RNS (Neuro Pace) is just a clinical trial that is not FDA approved and only been out in the market for 3 or 4 years. In a sense it seems as if they are just trying to recruit me to be a guinea pig. I am going to have to wait at least another few years or so to even think about this.

My speech and memory is not as sharp as it use to be as well. I constantly forget words (similar to when you hear a song and you don't remember the title), and I also forget events that have occurred. Yes, they put a grid inside of your brain along w/ the electrodes to stimiulate brain wave activity. Since it's actually in the brain it's the most effective way of finding out the exact location of the problem area. It doesn't really hurt it's just the way you feel afterwards was pretty bad. I couldn't feed myself and I had to get fed from loved ones as if I was a baby. Your head swells up really bad too. It's been 2 weeks since my surgery and I just got the staples out of my head 2 days ago. Other than then where they shaved my head in certain areas I look alright. Also my head is still pretty solid. Good luck w/ your surgery.

Sam