It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-12-2007, 10:14 PM   #1
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Waiting to have another brain surgury and having a lot of mixed emotions

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?

 
Old 08-13-2007, 10:00 AM   #2
Senior Member
(female)
 
Join Date: Aug 2007
Location: Sonoma, CA USA
Posts: 295
TopamaxKillsMe HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Sponsors Lightbulb
   
Old 08-13-2007, 08:22 PM   #3
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Old 08-13-2007, 08:43 PM   #4
Senior Member
(female)
 
Join Date: Aug 2007
Location: Sonoma, CA USA
Posts: 295
TopamaxKillsMe HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

Quote:
Originally Posted by Sk8ter Girl 23 View Post
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.

 
Old 08-15-2007, 07:40 PM   #5
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Old 08-15-2007, 07:57 PM   #6
Junior Member
(female)
 
Join Date: Aug 2006
Location: Tampa, FL
Posts: 13
krista.baby HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Old 08-16-2007, 07:55 PM   #7
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Smile Re: Waiting to have another brain surgury and having a lot of mixed emotions

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

 
Old 08-17-2007, 09:44 PM   #8
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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

 
Old 08-23-2007, 10:59 AM   #9
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Old 08-23-2007, 07:33 PM   #10
Junior Member
(female)
 
Join Date: Aug 2007
Location: NJ
Posts: 23
Sk8ter Girl 23 HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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

 
Old 08-24-2007, 09:50 AM   #11
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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

 
Old 08-24-2007, 03:05 PM   #12
Junior Member
(female)
 
Join Date: Dec 2005
Posts: 17
brent's mom HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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

 
Old 09-04-2007, 11:19 AM   #13
Junior Member
(female)
 
Join Date: Feb 2007
Location: Sarasota,Florida
Posts: 23
MGOBLUE HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Old 09-04-2007, 11:44 AM   #14
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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?

 
Old 09-05-2007, 01:09 PM   #15
Junior Member
(female)
 
Join Date: Feb 2007
Location: Sarasota,Florida
Posts: 23
MGOBLUE HB User
Re: Waiting to have another brain surgury and having a lot of mixed emotions

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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
I think i have ADD or depression...i tried adderall... :/ help? mccmelissa ADD / ADHD 10 03-05-2011 05:57 PM
How to cope while waiting sarasota2004 Cancer: Breast 38 06-15-2010 02:02 PM
Does my 9 year old daughter have schizophrenia? Avocado Family & Friends of the Mentally Ill 9 05-09-2009 07:07 AM
Steps That I have Taken To Beat The Monster trg247 Depression 289 12-19-2007 01:22 AM
Male Sling Procedure for Post Prostate Surgury Urinary Incontinence Bigmac2ash Incontinence 1 09-06-2007 10:06 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



030free (19), 92261 (11), Positive Cynic (9), Travis from MN (7), Nicole K (6), heyloe (5), cardshark (4), neurowreck (3), webartethan (2), Looking4aAnswer (2)

Site Wide Totals

teteri66 (1166), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 12:54 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!