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Posted 6/2/2007 11:04 AM (GMT 0)
Hi Everyone,

It has been a very long time since I have been around.  I have been having lots of testing done for upcoming surgery for a lobectomy.  My final tests were at the beginning of May and I had complications from the test.  During the Wada test when they were on the right side of the brain in the right artery they could not get through and had to do emergency surgery to open my carotid artery.  However since then I have not had a seizure.  I have had Epilepsy for 4 years.  I have been to Cardiologists because I also have SLE-Lupus too.  I usually have at least 1 seizure a month and during my busy work schedule-tax time a few more a month.  I have no auras, so I have not been driving for years.  But, now since they have fixed my carotid artery (and I am still taking my meds) I have not had a seizure.  I see the surgeon at the end of June.  But, does that sound possible that this could have fixed the problem?  I do not think that it is realistic but one never knows.  If anyone knows of an answer please let me know.  I do not go to my Neuro for awhile.

Peacelily

Posted 6/5/2007 3:46 PM (GMT 0)
HI Peacelilly,

 

I'm sorry you're dealing with so much.  I also have lupus, and simple partials.  I had my carotid and other arteries checked for abnormalities last year.  Everything came back normal, thank goodness.  It sounds like you went through quite an ordeal. (((hugs)))

 

I don't have any advice for you, but it would be very interesting if the carotid artery fix was the solution to your seizures.  What a miracle that would be!

 

Wanted to offer some encouragement to you!

 

Ginny

Posted 6/7/2007 11:24 AM (GMT 0)
Ginny,

Thank you very much. It would be a miracle if God took care of this problem. My Dad keeps telling me I will not have any more seizures because that is what he has been praying for. I have so many things wrong it is kind of scary to get your hopes up high about one thing. But, brain surgery I do not want! I am suposed to meet with the surgeon soon and still no seizures, it is almost 2 months. I will be asking lots of questions to the surgeon before I decide to have the surgery or not. I may have the do another EEG test with no seizure meds and see what happens. The last time I did that I had 7 seizures. But, I will do everything to see about this. Maybe they will just taper me off my meds and see. I am on 1000mg of Keppra and 300mg of Topamax. This is worth really looking into. Again, thank you for the encouragement. I will keep you in my prayers, who knows their are many miracles out there, maybe one will happen for you!

Cindy (PeaceLilly)
Posted 6/12/2007 8:48 AM (GMT 0)

Hiya,

I know enough Biology to give you a BASIC run though of the Vegus Nerve. I hope it is enough to help. Dont let anyone try and blind you with science... It has a couple of other names. If people talk about the pneumogastric nerve or cranial nerve X, then they mean the Vegus Nerve. The nerve starts in the brainstem and runs right the way through to the abdomen, branching off to several organs along the way (Heart, Lungs etc) to provide electrical stimulation. (It helps with heartbeat etc...) Nerves carry electricity and if it gets distorted it can change the amount of electricity going through it, and since the brain is quite sensitive to electricity this can trigger sz. Its a bit like when you turn on a light and it blows. It blows because of an excess of electricity and as a result the circuit breaker turns of the whole circuit to be safe until it is reset.

I hope this is useful. I never thought that I would ever need to use such information! Living proof that all information is useful to someone!

Darren

Posted 6/12/2007 11:15 AM (GMT 0)
Darren,

So, what you are saying is that you do not think I will have another seizure? I am having a consult with the suergon at the end of the month and since they put the stent in still no seizures. I am calling my Neuro today to see if he would consider to drop down my meds a little just to see if I would have a seizure or not. I am not going to have the surgery if I do not have another sz. But, I also have Lupus and they have ruled it out that these are definitely not from that but maybe someday I could get sz of the brain. I do not think the surgery would correct that anyway. But, we have lots of questions. Thank you very much for the info!

Cindy
Posted 6/12/2007 11:21 AM (GMT 0)
Dear Gracies Mom,

I hope I continue to seizure free! But, like I told Darren, I also have SLE-Lupus and can get seizures from the Lupus. But this is definitly not from that, this is Epilepsy!
My Dad keeps telling me I will not have another sz and I was trying not to believe him or get my hopes up high, but I am starting to really think I am not going to have anymore. It has been so long since I drove. I am 49 and have a grandchild on the way. If I was going to have the surgery I was trying to do it over the summer before the baby came, now I do not know if I need the surgery. We meet the suergon at the end of the month. We have lots of questions. I will keep you posted. thank you for the prayers. I do believe in them and miracles. I will pray for your daughter.

Cindy
Posted 6/13/2007 11:17 AM (GMT 0)
Hi Peacelilly,

I didnt want to give you the impression that you wont have another sz but rather what is possibly causing them. Going back to the lightbulb example, if you get a surge then the lightbulb blows. If there is a permenant fault on the circuit then the lightbulb will keep blowing (I.E. You will keep having sz's.) But sometimes, it is a one off surge and it never happens again. I wouldnt want to say whether you will have another sz but talking to your doctor is a good move. If the epilepsy is in remission, then dropping the meds shouldnt be an issue. Only your doctor can decide that. Keep us posted on how you get on.

Best Wishes

Darren

Posted 6/13/2007 6:09 PM (GMT 0)
Hi Darren

I just came back from my Rhemy and he is checking me for something that causes
the arteries to weaken. Strickly from the Lupus. My blood work was really bad this month, everything was way out of whack. But, of course I canot remember what he called it has something to do with the arteries weakening or clotting. I just came from some major blood work. Also I some really bad anemia. When it rains it pours. I did call the doctors whom took care of the stent and they are pleased that I have not had a seizure. So, we will see. I guess when the new blood work comes in and I have the results I am calling my Neuro here and see if he might drop some of my seizure meds down a little.

thanks!

Cindy
Posted 6/13/2007 8:13 PM (GMT 0)

Hi Peacelilly,

Sorry to hear about your bloodwork. Hopefully it should be easily solved. The anemia should be simple enough. I don't encourage regular alcohol drinking my any means but a pint of guiness 5 nights out of 7 in a week should sort you out! Guiness is choc-a-bloc with iron. As for the sz, only time will tell but the signs look encouraging!

Darren

Posted 6/13/2007 8:27 PM (GMT 0)
Thanks I will keep you posted!

Cindy
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