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Meeting with a Doc today about surgery
Thu, 01/15/2009 - 12:39Hi all,
I know its kind of a typical question. But it seems to me like 50/50 seem totally cured from having the surgery. I dont know what to do. I'm meeting with a Dr. on Long Island this afternoon to discuss it. My seizures started when i was 20 and they were about 1 a year till i was 25. (27 now) since then i've been having more and more. And when i say seizures, i mean all 225 pounds hitting the floor. Lately they've been more and more frequently and almost always when i've had less than 8hrs sleep.
I'm getting married in July to a great woman, and the worst of all of it is knowing how much it wretches her heart. on Tuesday I had one while driving and by God's hand I Came to on the side of the road un injured, my car barely had a scratch on it! but a few weeks ago I barely made it out of the shower in time and collapsed in the door way and split my brow open.
Anyway, I'm meeting this Dr. Today to see about the surgery. I was hoping I could get a few comments from people who have had it done and seen some long term healing.
Also, i'm just outside NYC, does it matter which Dr. does this? or is it like getting a wisdom tooth out? (pretty standard these days?
thanks,
Kevin
Comments
Re: Meeting with a Doc today about surgery
Submitted by cvargas on Fri, 2009-02-20 - 00:17
hi there
I was diagnosed at the age of 13 and now Im 37 I had right frontal lobe done four years ago and I would do it again in a heart beat if I could or if I had to. Ill always be E and on meds but I dont have all the sz that I was having I was basically having all of them (I dont remember their names) I just get small sz like auras.
I was driving on a freeway and started to feel funny so I pulled over to the emergency lane all I remember is locking my door andputting my car in park ..the next thing I remember is I was walking ...I walked off the highway in front of two exits and the thing about is I was in front of a Cemetary .....I was 22 I did get a second chance and with the surgery a third so I never do give up!
:cvargas
hi there
I was diagnosed at the age of 13 and now Im 37 I had right frontal lobe done four years ago and I would do it again in a heart beat if I could or if I had to. Ill always be E and on meds but I dont have all the sz that I was having I was basically having all of them (I dont remember their names) I just get small sz like auras.
I was driving on a freeway and started to feel funny so I pulled over to the emergency lane all I remember is locking my door andputting my car in park ..the next thing I remember is I was walking ...I walked off the highway in front of two exits and the thing about is I was in front of a Cemetary .....I was 22 I did get a second chance and with the surgery a third so I never do give up!
:cvargas
Re: Meeting with a Doc today about surgery
Submitted by mitsybitsy on Fri, 2009-02-20 - 15:56
I have had seizures ever since I was 8 yrs old, I am now 27 also our stories are actually very similar. I also have just got married except to a great guy. I also have just got into a car accident, lost my license due to a seizure, but because of all of this fustration I went ahead with the brain surgery. Actually I have had 3 brain surgeries all together, I'll start from the beginning. When I was like 21 my seizures switched to my mouth area where my toungue would just twitch and twitch where I couldn't even talk or eat with out my toungue consistently twitching. When I stuck my toungue out it just looked like it was vibrating, it was really bad. I was at Stony Brook Hospital at that time, but my doctor was like I don't know what to do with you, she had tried every med available and nothing would control it. So she sent me to Columbia Presbyterian Hospital thats when they said they would have to do the brain surgery. I went ahead with it and my brain surgery was 6 hrs long and I had to be awake during a good portion of it so I could tell the doctor whether or not my toungue was still twitching. The surgery was a great success except about 5 yrs later my seizures came back but in a different form. Now I was having petit mal seizures so now it was time to think about a second surgery, the doctor said the reason why was because last time they went in just to stop my toungue, but this time they were 65% sure they could get everything. The reason why I say I had 3 surgeries was because going in this time consisted of 2 surgeries. The first one was implanting leads directly on my brain itself, and then I had to spend a week in the hospital with these leads on my brain because they weren't getting any information with them just on my head. The second surgery was actually removing what they had found. This time they put me to sleep for the whole thing. My recommendation to you is to go to Columbia Presbyterian Hospital they have the best of the best ecspecially when it comes to brain surgery. I had Dr. McKhann. But you see a team of neurologists its not like you see 1 doctor and thats it, you are definetly in good hands. The doctors think I have a good chance of taking little to no meds after this surgery, how many meds are you on? I take about 18 pills a day but in april my doctor is going to reevaluate me and see if we can start tappering. Congratulations and best of luck to you!
I have had seizures ever since I was 8 yrs old, I am now 27 also our stories are actually very similar. I also have just got married except to a great guy. I also have just got into a car accident, lost my license due to a seizure, but because of all of this fustration I went ahead with the brain surgery. Actually I have had 3 brain surgeries all together, I'll start from the beginning. When I was like 21 my seizures switched to my mouth area where my toungue would just twitch and twitch where I couldn't even talk or eat with out my toungue consistently twitching. When I stuck my toungue out it just looked like it was vibrating, it was really bad. I was at Stony Brook Hospital at that time, but my doctor was like I don't know what to do with you, she had tried every med available and nothing would control it. So she sent me to Columbia Presbyterian Hospital thats when they said they would have to do the brain surgery. I went ahead with it and my brain surgery was 6 hrs long and I had to be awake during a good portion of it so I could tell the doctor whether or not my toungue was still twitching. The surgery was a great success except about 5 yrs later my seizures came back but in a different form. Now I was having petit mal seizures so now it was time to think about a second surgery, the doctor said the reason why was because last time they went in just to stop my toungue, but this time they were 65% sure they could get everything. The reason why I say I had 3 surgeries was because going in this time consisted of 2 surgeries. The first one was implanting leads directly on my brain itself, and then I had to spend a week in the hospital with these leads on my brain because they weren't getting any information with them just on my head. The second surgery was actually removing what they had found. This time they put me to sleep for the whole thing. My recommendation to you is to go to Columbia Presbyterian Hospital they have the best of the best ecspecially when it comes to brain surgery. I had Dr. McKhann. But you see a team of neurologists its not like you see 1 doctor and thats it, you are definetly in good hands. The doctors think I have a good chance of taking little to no meds after this surgery, how many meds are you on? I take about 18 pills a day but in april my doctor is going to reevaluate me and see if we can start tappering. Congratulations and best of luck to you!
Re: Meeting with a Doc today about surgery
Submitted by HappyGirl25 on Fri, 2009-02-06 - 10:19
HI.......
I just want to let you know I understand you totally. I was 26 when I was diagnosed with gelestic epilepsy, had surgery at 33(now 35). This week was my 2 year anniversary from my surgery, and I have been seizure free. When my doctor first told me about having the surgery I was scared. I waited 2 years before being ready for the surgery because I was afraid to do it. Now I know it is the BEST thing i evere did.
My Neurologist and Neuro Surgery are at Columbia Preysbyterian Hospital. I am from NJ and the doctor I met the first time was BAD for me. He made it seem like my life was over. I went to Dr. Bazil at Columbia and he was terrific. He always made me feel like I am still a person and life moves on (helping me try to do what was best for me). Dr. Goodman was my surgeon, and he was wonderful as well.
I had a reason for my surgery as well. I have a son, and at the time he was 5 for my surgery. He is now 7 and I can enjoy things in a different way. He always helped me during a seizure. I had a REALLY bad one and needed to get stiches...... I knew it was time to take advantage of the surgery....... and now I am glad I did!!!!!!
Please let me know if you have any questions........... or just need a chat about what you are going thru!! Cause I understand totally!!!!
HI.......
I just want to let you know I understand you totally. I was 26 when I was diagnosed with gelestic epilepsy, had surgery at 33(now 35). This week was my 2 year anniversary from my surgery, and I have been seizure free. When my doctor first told me about having the surgery I was scared. I waited 2 years before being ready for the surgery because I was afraid to do it. Now I know it is the BEST thing i evere did.
My Neurologist and Neuro Surgery are at Columbia Preysbyterian Hospital. I am from NJ and the doctor I met the first time was BAD for me. He made it seem like my life was over. I went to Dr. Bazil at Columbia and he was terrific. He always made me feel like I am still a person and life moves on (helping me try to do what was best for me). Dr. Goodman was my surgeon, and he was wonderful as well.
I had a reason for my surgery as well. I have a son, and at the time he was 5 for my surgery. He is now 7 and I can enjoy things in a different way. He always helped me during a seizure. I had a REALLY bad one and needed to get stiches...... I knew it was time to take advantage of the surgery....... and now I am glad I did!!!!!!
Please let me know if you have any questions........... or just need a chat about what you are going thru!! Cause I understand totally!!!!