 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / February 2006Surgery questions
Hello, group I have posted here a few times with questions about my 14 year old son. He's had epilepsy since age 7, with partials (both simple and complex) as well as grand mals. They have determined that his right temporal lobe is where the problem lies. We saw a specialist on Monday who has recommended a temporal lobectomy. I am overwhelmed and scared and I don't know what else. Anyone here have this surgery? Do you know about negative outcomes? I have found all sorts of positive info on the web and anecdotally, but as a nurse, I know there are always some negatives. I have been to the Epilepsy.com web site, and the info there looks really positive. Thanks for helping! Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies holly@careplans.com www.careplans.com Hi Holly, I had a benign tumor and part of my right temporal lobe removed at Mass General in July 1999. I remain seizure-free. My short-term memory is poor. This surgery should be done at an epilepsy surgery center. They will perform tests to confirm that he is a candidate for the surgery. Then you can decide whether to have it. Having the testing does not commit you to going through with the surgery. So, get a referral to an epilepsy surgery center first. Feel free to email me with any questions. Liz > Hello, group > I have posted here a few times with questions about my 14 year old son. He's [quoted text clipped - 17 lines] > > holly@careplans.com www.careplans.com Temporal lobe surgery often has the best outcome. Higher percentage of being seizure free after and less impact than in some other lobes. They usually do brain mapping first to have a pretty good idea if there would be deficits after (as far as motor, speech, memory etc)..... Best wishes as you look into this. Being educated really does help before going into these things. The testing is usually done in 3 phases. First one is non invasive with PET scan and Video EEG and Neuropsych. Second phase is the brain mapping, WADA, the last testing is invasive with implanted electrode strips or grids to completely pinpoint where the focus is. This surgery takes place usually a few days to a week prior to the resective surgery. FInd the best Comprehensive Epilepsy Center possible. I hope your son can find relief from his seizures. I also have a 14 yr old son with epilepsy who was diagnosed at age 7. Gin Thanks, Gin and Liz. We have been seen at MCG in Augusta, GA on Monday. That's where we got the info about the surgery. We have an MRI tomorrow and are awaiting the admission for the video EEG unit. According to our neurologist here, this is one of the leading centers in the southeast, so I will be trusting them with my child. Just very, very overwhelmed. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies holly@careplans.com www.careplans.com > Temporal lobe surgery often has the best outcome. Higher percentage of > being seizure free after and less impact than in some other lobes. [quoted text clipped - 15 lines] > old son with epilepsy who was diagnosed at age 7. > Gin That's understandable. We'd rather we could take their place. This group has a good variety of people with lots of experience, over many timezones, with support for you. There was also a group posted here ~3 years ago, that was a support group for Parents of Kids with Ep. I don't know the address any longer, unfortunately. Perhaps if some others see this and know a link, they can post that here for you too, as another resource and for more support. Keep us posted. G./ Howdy! All of the testing that is necessary before the surgery is quite a lengthly process. If you are even CONSIDERING the option I would suggest that you get the testing procedures started. If you change your mind you can say NO! at any time before the operation. Don't let any doctor bully you into thinking that just because you have committed yourself to the testing you have also committed yourself to the surgery! When I was on track I had: A full neuro-psych test Video eeg test (which was incecisive) Invasive monitoring (video eeg with the electrodes placed on the surface of the brain instead of on the scalp) I was disqualified at that point so I never had the WADA test. The pre-surgery testing varies. First, something was detected on an MRI. That set me on the course for surgery. I had the video EEG and a PET scan. Invasive monitoring wasn't necessary and I didn't have a WADA test either. The tumor(benign) was in my right temporal lobe so it was easy to get to without disturbing much brain tissue. Liz > Howdy! > [quoted text clipped - 18 lines] > > I was disqualified at that point so I never had the WADA test. Cody's MRI was essentially normal, so we are now on track for the video EEG. We will also be doing the neuropsychiatric workup and Wada test, so far as I know. I am beginning to wrap my mind around this now. Thank you all! Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies holly@careplans.com www.careplans.com > The pre-surgery testing varies. First, something was detected on an > MRI. That set me on the course for surgery. I had the video EEG and a [quoted text clipped - 25 lines] > > > > I was disqualified at that point so I never had the WADA test. |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.