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Feeling strange
Wed, 02/09/2005 - 21:03Comments
RE: RE: Feeling strange
Submitted by WendyS on Sun, 2005-01-30 - 15:31
RE: RE: RE: Feeling strange
Submitted by aprilmay on Thu, 2005-02-03 - 21:30
Wendy,
I just returned from my 1st visit at the Cleveland Clinic and they told me that based on my previous med records and age and health that I would be an excellent candidate for pre-testing for a Temporal Lobectomy. So I just need to look over some more info. I also was asked to consider participating in a study called ERSET. You can read more about it on the Cleveland Clinic website. The study is to determine whether or not to consider temp. lobectomy sooner or to try extensive drug therapy for up to 2 years. Good info so pass it on. Thanks Have a Good day, GOD Bless
April
Wendy,
I just returned from my 1st visit at the Cleveland Clinic and they told me that based on my previous med records and age and health that I would be an excellent candidate for pre-testing for a Temporal Lobectomy. So I just need to look over some more info. I also was asked to consider participating in a study called ERSET. You can read more about it on the Cleveland Clinic website. The study is to determine whether or not to consider temp. lobectomy sooner or to try extensive drug therapy for up to 2 years. Good info so pass it on. Thanks Have a Good day, GOD Bless
April
RE: RE: Feeling strange
Submitted by mommy2kyra on Sat, 2005-01-29 - 21:17
Hi April,
As I'm sure you'll find out, not everyone is a good candidate for surgery. I have absolutely NO experience with it, but I wanted to respond and throw in my two cents :)
It may be a tempting idea to you, to get surgery and hope that the seizures will stop, but there's ALWAYS a down side with any treatment. The temporal lobe is involved in very complex behaviors, feelings, speech, and memory. For that reason alone, things would have to be really bad in order for me to consider surgery. But...that's me. I know what you mean about the memory thing, mine is shot! Unfortunately, memory is affected by our seizures. The more seizures you have, the more impaired you'll be (typically). And it's not a temporary thing either. That's the bummer. Being heavily medicated will also affect your memory (as well as other things, such as reaction time). You should mention your memory diffculties to your doc to see if there are less intense changes that can be made to improve your quality of life. JMI
I can relate to feeling crummy about having such a poor memory though, I have 2-year-old and 4-month-old daughters and I hate to think of how my disorder may affect them as they grow up. I will just have to do the best I can and hope that they someday understand. I wish you the best of luck, take care!
Heather
Hi April,
As I'm sure you'll find out, not everyone is a good candidate for surgery. I have absolutely NO experience with it, but I wanted to respond and throw in my two cents :)
It may be a tempting idea to you, to get surgery and hope that the seizures will stop, but there's ALWAYS a down side with any treatment. The temporal lobe is involved in very complex behaviors, feelings, speech, and memory. For that reason alone, things would have to be really bad in order for me to consider surgery. But...that's me. I know what you mean about the memory thing, mine is shot! Unfortunately, memory is affected by our seizures. The more seizures you have, the more impaired you'll be (typically). And it's not a temporary thing either. That's the bummer. Being heavily medicated will also affect your memory (as well as other things, such as reaction time). You should mention your memory diffculties to your doc to see if there are less intense changes that can be made to improve your quality of life. JMI
I can relate to feeling crummy about having such a poor memory though, I have 2-year-old and 4-month-old daughters and I hate to think of how my disorder may affect them as they grow up. I will just have to do the best I can and hope that they someday understand. I wish you the best of luck, take care!
Heather