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Considering Surgery

Mon, 01/17/2005 - 11:30
My 15 year old son's neurologists want to send him to an epilepsy clinic (UCLA) to evaluate him as a candidate for surgery. Right now I am very against him having any surgery and so I am not in favor of this evaluation. Is there any benefit for having the evaluation for surgery even if you have no intention of ever having the operation. Here's some background. My son has been diagnosed with left temporal lobe, partial complex seizures. He's currently on Trilepal and Keppra. He's only tried two other meds. Right now he's developed a pattern to where he will go seizure free for 2 to 3 weeks. Then in about 3 days, he'll have several seizures. The worst has been 4 in one day. Then will go seizure free for a couple more weeks. He started this pattern since he's been on the Keppra last May.

Comments

RE: Considering Surgery

Submitted by pertzo on Wed, 2005-03-16 - 18:43
hi---just found this site and thought i would join in with some history..i have a 17 year old daughter who started having seizures at 9 years old out of the blue...she was at a diving meet at the time---she had been diving two years...noone saw whether she hit her head first and then had the seizure or vice=versa....anyway nothing was found abnormal.........then she had another ---she was put on tegretol for 2 years which stopped them,tried to wean her but they came back---we then switched to depakote which also worked but she gained 30 pounds, which she would not tolerate--so we switched to lamictal and then topamax, but nothing was working and they were grand mal in nature and happening once a month.....at this point she had no periods to correlate the patterns to-----we switched docs and went on trileptal.---still once a month--then added keppra-----finally we decided to do surgery at rainbow in cleveland----she had a left parietal resection in july 04 2004 and in august they came right back again with the same frequency.....but now we had periods to deal with---we were able to establish a pattern with them occurring around that time of the month and are now trying to get some kind of progesterone therapy going------what frustration for us and her---of course the no driving part is the worst for her as she has no clue what she does or looks like when she has the seizures.....also she says she wants to go as far away as she can for college and get away from her over protective parents----where does it end????well sorry for venting----anybody else out there feel like i do?   Renee in cleveland, ohio

RE: Considering Surgery

Submitted by angel_lts on Thu, 2005-03-17 - 08:00
My support group is about surgeries, ketogenic, VNS, alternatives and has alot of good info in links that may help you make a decision.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: Considering Surgery

Submitted by cooljules on Thu, 2005-03-17 - 09:49

Hi there, there is no harm with getting the brain scans done it can be very benefical , can i askyou why you do not favour getting the scans done ?. when these are done it can let the doctors see what is going on and after they are done you then speak to the doctors again about the surgery.

I can relate alot to the type of seizures your son has, i have been told i have uncontrollable epilepsy and have had brain surgery done aswell . Something to do is sit down and have a long chat with your son and find out what he feels about getting the surgery done, the pattern he has is something similar to what i have but mine are hormone related too .

Having the surgery done can be so benifical but it has to be remembered that it might not work so it is truthfully a catch 22 as to what will happen to your son but give the tests a try they can take a while to do it took me over a year when i was getting mine done i think it took me over a year. Would really like to speak to you and help you if i can.

bye  julie

                                                                                                                                                                                             

Hi there, there is no harm with getting the brain scans done it can be very benefical , can i askyou why you do not favour getting the scans done ?. when these are done it can let the doctors see what is going on and after they are done you then speak to the doctors again about the surgery.

I can relate alot to the type of seizures your son has, i have been told i have uncontrollable epilepsy and have had brain surgery done aswell . Something to do is sit down and have a long chat with your son and find out what he feels about getting the surgery done, the pattern he has is something similar to what i have but mine are hormone related too .

Having the surgery done can be so benifical but it has to be remembered that it might not work so it is truthfully a catch 22 as to what will happen to your son but give the tests a try they can take a while to do it took me over a year when i was getting mine done i think it took me over a year. Would really like to speak to you and help you if i can.

bye  julie

                                                                                                                                                                                             

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