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Old 11-17-2004, 12:28 PM   #1
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ELLIANA HB User
Question I NEED ADVICE!! (pregnancy & the surgery)

Hello. I've been looking for a support site like this and I have to say that it is AWESOME! It's so comforting to know that I am not alone out there. I am 25 yrs old and I suffer from grand-mal seizures. Currently I am on Lamictal and Topamax. The seizures started in Oct on 2001 and I have had 10 to date. Honestly having the seizures is not a major concern for me, however I want a baby more than anything in this world. I know women do it all the time but I am so scared of hurting the baby. My doctor diagnosed me with MTS and recommended me for the surgery, but that means no baby for a while. Any suggestions? I would love to hear from any women w/epilepsy who carried a baby and people who had the surgery. Thanks!!

Last edited by ELLIANA; 11-17-2004 at 12:32 PM.

 
Old 11-17-2004, 07:32 PM   #2
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tkdmom96 HB User
Re: I NEED ADVICE!! (pregnancy & the surgery)

Hi & welcome!

Our daughter had a Left Temporal Lobectomy on June 7th of this year, for MTS, and is doing super. She is 16 years old and has had E since she was 9 months old. If the doctors are certain, as to where your language and memory centers are located, I would strongly consider the surgery. Katie had a WADA test that showed bi-lateral memory (a little stonger on the right side) and language on the right. So the surgery on the left was not going to impact her greatly. But as you know, not everything is 100%. Signing those consent forms was a big deal.

Her memory is doing well so far, she was given the ok to try out for the JV basketball team and made it, is back to TaeKwonDo (working on 2nd degree Blackbelt), and plays piano (8 years). We have noticed some slight short term memory things, but nothing drastic. Her grades come out in 2 weeks, so this will be a huge indicator. Katie takes Lamictal and will be off of Keppra as of next Thursday (Thanksgiving)! Yahooooooooo!!!

Many women who have E have children. But you also have to look at medication affects on the fetus and your comfort level in caring for your child. Do you have auras before a seizure? To warn you of an impending seizure? Have any of them been Grand Mals?

Any questions, feel free to post...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
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Old 11-17-2004, 11:33 PM   #3
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Re: I NEED ADVICE!! (pregnancy & the surgery)

Dear Vicky, Thank you so much for your reply. I am truly happy for your daughter and I wish her only the best in life. Just by your description I can tell that she is such a strong and determined person and you should be so proud of her.

I have been on Lamictal since the beginning of my seizures (2001) and out of all the meds that I have taken (Dilantin, Tegretol, and Topamax) Lamictal has been my favorite. The side effects have been very minimal, only that I get sleepy sometimes and it's hard for me to fall asleep. But I definately prefer those effects than taking more meds. Every day I think about having a baby. I've been married for 3 yrs and I have not been taking birth control and still no baby. My doctor has been telling me to wait, but I can't. Am I being selfish? All of my seizures have been Grand Mal and I have been so blessed that I have not seriously hurt myself. Only lots of bruises, broken toe, and some serious tongue biting. It could have been worse. I never get any auras before my seizures, but I really wish I did. Hearing about people who have had the surgery eases my mind so much. I think I may have fertility problems also and that is harder to deal with than the epilepsy. Do you think I should wait and get the surgery before persuing to get pregnant?? Any advice would help.
Thank you so much!!
Elliana

 
Old 11-20-2004, 02:32 PM   #4
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Re: I NEED ADVICE!! (pregnancy & the surgery)

Hi Elliana,

Well, the decision whether or not to wait has to be made by you and your husband. You both have to be comfortable with your ability to care for your baby. The fact that you don't have auras (warnings) before a seizure makes it a little more difficult. You never know when, how or what could possibly happen. It can be dealt with, but you need to meet with someone who can teach you how to handle a baby when you are alone. I would think a local or the national Epilepsy Foundation would be a good starting resource.

Does your OB/GYN have you taking Folic Acid? That is very important if you are planning to conceive. The amount of floic acid drops when taking AEDs and can cause birth defects. As can taking certain AEDs during pregnancy.
Katie is 16 and has been on folic acid for over a year now, recommended by our Epi. You can get it anywhere.

I will give you my thought, as to how I would come to my decision. I would go through all of the testing to make sure surgery is the absolute best option. That it offers you the best outcome for living life with no or minimal seizures. Possibly get a second opinion if you have questions. If all of the information from the doctors comes back with a big thumbs up, (like Katie's did), then I would think to myself about the possibility of bringing a child into the world, after I take care of myself. You aren't only thinking of this as far as having a baby, it also has to do with making your life with your husband that much better. Of course, this all depends on getting the thumbs up. If it were indeed me, and I know how well Katie has done, I would very seriously consider it. We had a fantastic neurosurgeon, who I wouldn't bat an eye at recommending to ANYONE. So, I guess if you read between the lines, you see my answer.

You never told me, where are you looking at having the surgery? We are in Milwaukee, WI and our surgeon was Dr. Wade Mueller. He has done over 300 epilepsy surgeries, adult and pediatric.

Did they find something conclusive on your MRI? Did it show an area where your hippocampus shrunk? Does your EEG point to one specific area where seizures are ocurring? Are your seizures always the same? Have they done a SPECT scan? A PET scan? A VEEG study while you are in the hospital? A WADA test? A Neuropsych exam? These are all things Katie did to become a surgical candidate. Don't settle with just being told you could have surgery. The docs need to provide you with AMPLE evidence, that you are a good candidate.


Take care,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 11-20-2004, 02:41 PM   #5
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Re: I NEED ADVICE!! (pregnancy & the surgery)

Elliana,

I forgot to thank you for the kind words about Katie, she is a strong and determined young lady! She was ready for this surgery and was treated like an adult through the whole process. She knew just about everything we did. We kept a few things from her, for her peace of mind and well being.

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 11-23-2004, 04:25 PM   #6
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Re: I NEED ADVICE!! (pregnancy & the surgery)

Hi Vicky,

Thank you so much for responding. You sound like a pro at all this. Well, as for the docs findings I've had 3 EEG's which all have been abnormal and 2 MRI's which show sclerosis of the temporal lobe. (I don't remember which one). All my seizures have been the same (tonic-clonic) I just moved and got a new doctor here in San Diego, CA at the naval hospital. He is amazing. Unfortunately I will be moving again in Feb to Jacksonville, FL so again I will have a new doctor. However my current doc studied at Duke University which is said to have one of the top epilepsy centers and that is where I will begin all the prelim testing for the surgery. It is not that far from Jacksonville. How long does the prelim testing take?

What you said regarding the baby makes the situation so much more real for me. I know what I should do (surgery) but it is so hard for me to accept that it will be a long while before I become a mom. Hearing your opinion has helped so much to open my eyes. Thank You!

Elliana

 
Old 11-27-2004, 10:14 AM   #7
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tkdmom96 HB User
Re: I NEED ADVICE!! (pregnancy & the surgery)

Hi Elliana,

I haven't been able to get on to the boards for DAYS! The website was having problems and I couldn't read or post a thing. UHG! I normally check in every day or two.

Katie's process for surgery took nearly a year. We started with an appt. in May of 2003, MRI July 2003, Neuropysch exam in July 2003, EMU stay with VEEG in August 2003, these results went to the surgical board in October 2003. It looked favorable until a doc questioned right side activity on Katie's EEG. They couldn't conclusively say it started on the left and crossed over to the right. So, it was held for another review in November. We found out right after Thanksgiving 2003 that Katie would have to have a diagnostic surgery to make everything conclusive. 90% of everything showed MTS, but the EEG was throwing them off. In April 2004 (we had to wait for spring break because Katie was in school and we couldn't get scheduled for Christmas break...neurosurgeon on vacation) Katie had subdural strip surgery. The neurosurgeon drilled a hole in each temple and wove tephlon strips with electrodes on them through the layers of katie's brain and she was sent back up to the EMU to have seizures so they could record again. This time they were ablr to pinpoint EXACTLY where they were coming from because the electrodes were ON her brain. The conclusion was: the seizures started left and crossed over to the right...their exact thoughts, but they needed to be sure that there wasn't independent seizure activity on the right side. We found out on the 3rd day of that EMU stay that Katie was definately a surgical candidate. We were told there was an 85-90% chance of her being seizure free. So, it was scheduled right when we were in the hospital...for June 7th, 2004.

That was the longest 2 months of waiting. We had to wait for school to be finished. As you can see, your case could go much quicker because of some of the things we needed to wait for. (doc schedules, school, etc) You could be done in 6 months or less. I can't tell you how well Katie is doing...it is a true blessing!

Any other questions, don't hesitate. I'm sure if you are going to a top notch clinic, they will do all of the testings I mentioned. Copy the post and take it with you. That way you'll go in with a bunch of info and blow their socks off!

Take care,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
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