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How long to wait?
Mustang_1968 posted:
Hi folks,
First time i've been on this discussion board, but I've had tonic-clonic and partial complex seizures for 8 years now. I'm refactory for almost all the current medications that are available, but take lamotrigine and zanisomide right now with limited side effects, but not full seizure control. And recently (last 6months) my neurologists referred me to an epilepsy center for testing for surgery. I've been through a variety of the testing, with all but one of the final tests completed. I've been waiting for 4 months now, for the (as the hospital center put it) "machine" to be fixed. I call regularly to get a status on where we they are at but continue to get the same answer. I'm getting past upset, and to the point where maybe i should just punt on this whole surgery as an option thing, and just learn to deal with ever changing meds and ongoing seizures.
So, I'd like some input if you would. I'm I just being too pushy on this as i would like to see some progress? I know that some folks have tests that take years to complete before surgery options are considered. Or should i just clam up and deal with it?
Thanks all
-M
First time i've been on this discussion board, but I've had tonic-clonic and partial complex seizures for 8 years now. I'm refactory for almost all the current medications that are available, but take lamotrigine and zanisomide right now with limited side effects, but not full seizure control. And recently (last 6months) my neurologists referred me to an epilepsy center for testing for surgery. I've been through a variety of the testing, with all but one of the final tests completed. I've been waiting for 4 months now, for the (as the hospital center put it) "machine" to be fixed. I call regularly to get a status on where we they are at but continue to get the same answer. I'm getting past upset, and to the point where maybe i should just punt on this whole surgery as an option thing, and just learn to deal with ever changing meds and ongoing seizures.
So, I'd like some input if you would. I'm I just being too pushy on this as i would like to see some progress? I know that some folks have tests that take years to complete before surgery options are considered. Or should i just clam up and deal with it?
Thanks all
-M
4 Replies |Watch This Discussion | Report This| Share this:How long to wait?Hi folks,<br />First time i've been on this discussion board, but I've had tonic-clonic and partial complex seizures for 8 years now. I'm refactory for almost all the current medications that are available, but take lamotrigine and zanisomide right now with limited side effects, but not full seizure control. And recently (last 6months) my neurologists referred me to an epilepsy center for testing for surgery. I've been through a variety of the testing, with all but one of the final tests completed. I've been waiting for 4 months now, for the (as the hospital center put it) "machine" to be fixed. I call regularly to get a status on where we they are at but continue to get the same answer. I'm getting past upset, and to the point where maybe i should just punt on this whole surgery as an option thing, and just learn to deal with ever changing meds and ongoing seizures.<br /> <br />So, I'd like some input if you would. I'm I just being too pushy on this as i would like to see some progress? I know that some folks have tests that take years to complete before surgery options are considered. Or should i just clam up and deal with it?<br /> <br />Thanks all<br />-M
BlazingTiger responded:
If it is an issue with a machine I would say be patient. you want everything to be working properly that could & or would be a benefit to you. Everything will all work out in its own time.
Jason
Jason
Report This| Share this:How long to wait?If it is an issue with a machine I would say be patient. you want everything to be working properly that could & or would be a benefit to you. Everything will all work out in its own time.<br /><br />Jason
saxofone1 responded:
Hi Mustang,
I don't think you're being too pushy. You're doing what many people don't do. You are staying on top of things. Too many people simply wait w/o seeking answers/explanations.
As Jason said, you want the equipment running properly. If the upcoming tests regard possible surgery, there is no need for faulty equipment.
I understand your journey with meds. I've been on 10 in the past 37 years. For a while the meds were effective but sooner or later changes were necessary.
Patience is hard to maintain in many situations. Do your best not to lose it for stress can generate seizure activity.
Is there another facility in your area that is equipped for this test?
Hang in there. Welcome to the site.
angie
I don't think you're being too pushy. You're doing what many people don't do. You are staying on top of things. Too many people simply wait w/o seeking answers/explanations.
As Jason said, you want the equipment running properly. If the upcoming tests regard possible surgery, there is no need for faulty equipment.
I understand your journey with meds. I've been on 10 in the past 37 years. For a while the meds were effective but sooner or later changes were necessary.
Patience is hard to maintain in many situations. Do your best not to lose it for stress can generate seizure activity.
Is there another facility in your area that is equipped for this test?
Hang in there. Welcome to the site.
angie
Report This| Share this:How long to wait?Hi Mustang,<br /> <br />I don't think you're being too pushy. You're doing what many people don't do. You are staying on top of things. Too many people simply wait w/o seeking answers/explanations.<br /> <br />As Jason said, you want the equipment running properly. If the upcoming tests regard possible surgery, there is no need for faulty equipment.<br /> <br />I understand your journey with meds. I've been on 10 in the past 37 years. For a while the meds were effective but sooner or later changes were necessary.<br /> <br />Patience is hard to maintain in many situations. Do your best not to lose it for stress can generate seizure activity.<br /> <br />Is there another facility in your area that is equipped for this test? <br /> <br />Hang in there. Welcome to the site.<br />angie
dancer86442 replied to saxofone1's response:
Mustang, I just saw this article on FB. But, have read a similar article on medicalnewstoday.com. Here is what's new/old news about surgery. 
http://www.mlive.com/health/index.ssf/2012/06/more_epilepsy_patients_should.html
Mustang, have you ever considered 'alternatives' for control? ie: Diets, neurofeedback, supplements. Coconut Oil is the new 'cure'. Use our Search This Community Tool for the Link/article. Touted for Alzeimer's & Ep Too! Plus, a few more Neuro Disorders.
Love Candi
http://www.mlive.com/health/index.ssf/2012/06/more_epilepsy_patients_should.html
Mustang, have you ever considered 'alternatives' for control? ie: Diets, neurofeedback, supplements. Coconut Oil is the new 'cure'.
Use our Search This Community Tool for the Link/article. Touted for Alzeimer's & Ep Too! Plus, a few more Neuro Disorders. Love Candi
Report This| Share this:How long to wait?Mustang, I just saw this article on FB. But, have read a similar article on medicalnewstoday.com. Here is what's new/old news about surgery. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br /><a rel="nofollow" href="http://www.mlive.com/health/index.ssf/2012/06/more_epilepsy_patients_should.html">http://www.mlive.com/health/index.ssf/2012/06/more_epilepsy_patients_should.html</a> <br /><br />Mustang, have you ever considered 'alternatives' for control? ie: Diets, neurofeedback, supplements. Coconut Oil is the new 'cure'. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> Use our Search This Community Tool for the Link/article. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> Touted for Alzeimer's & Ep Too! Plus, a few more Neuro Disorders. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"><br /><br />Love Candi
hula_dancer73 responded:
have you ever considered the VNS (Vagus Nerve Stimulator?)
I ahve one becuase I was NOT a candiate for the brain surgery.
Have had EP all my life but it was never documented until '03 so next year will be 10 years with the disorder.
THe VNS is for intractable szs that do NOT repsond to the typical meds.
Same here. I got the device on Sept 20th of '07. IT wore down and had to be replaced no biggie there.
IT cut my szs dodwn from 10-12 a day almost EVERY day to 3-4 a month.
in my mind I would thing it would be a good fit for you but I AM NOT A DOCTOR!
THey usally last around 3-5 years before replacing it.
BUT...when you have a sz or feel one coming on justtake the special high-poweredmagnet that Cyberonics includes in the kit after your surgery, and swipe the VNS that is just under theskin where a ace maker would go. and th e sz shoud iether stop or if you can not get to the VNS in time it can shorten thesz.
IT makes them less severe, less frequent and less in length. IT also shortens up the post-ictal time as well. my post-ictal time went from a half hr to an hr and now it is down to about 10-15 minutes.
hula_dancer
VNS REP
O'ahu--Honolulu--Hawi'i
I ahve one becuase I was NOT a candiate for the brain surgery.
Have had EP all my life but it was never documented until '03 so next year will be 10 years with the disorder.
THe VNS is for intractable szs that do NOT repsond to the typical meds.
Same here. I got the device on Sept 20th of '07. IT wore down and had to be replaced no biggie there.
IT cut my szs dodwn from 10-12 a day almost EVERY day to 3-4 a month.
in my mind I would thing it would be a good fit for you but I AM NOT A DOCTOR!
THey usally last around 3-5 years before replacing it.
BUT...when you have a sz or feel one coming on justtake the special high-poweredmagnet that Cyberonics includes in the kit after your surgery, and swipe the VNS that is just under theskin where a ace maker would go. and th e sz shoud iether stop or if you can not get to the VNS in time it can shorten thesz.
IT makes them less severe, less frequent and less in length. IT also shortens up the post-ictal time as well. my post-ictal time went from a half hr to an hr and now it is down to about 10-15 minutes.
hula_dancer
VNS REP
O'ahu--Honolulu--Hawi'i
Report This| Share this:How long to wait?have you ever considered the VNS (Vagus Nerve Stimulator?)<br /> <br />I ahve one becuase I was NOT a candiate for the brain surgery.<br /> <br />Have had EP all my life but it was never documented until '03 so next year will be 10 years with the disorder.<br /> <br />THe VNS is for intractable szs that do NOT repsond to the typical meds. <br /> <br />Same here. I got the device on Sept 20th of '07. IT wore down and had to be replaced no biggie there.<br /> <br />IT cut my szs dodwn from 10-12 a day almost EVERY day to 3-4 a month.<br /> <br />in my mind I would thing it would be a good fit for you but I AM NOT A DOCTOR!<br /> <br />THey usally last around 3-5 years before replacing it.<br /> <br />BUT...when you have a sz or feel one coming on justtake the special high-poweredmagnet that Cyberonics includes in the kit after your surgery, and swipe the VNS that is just under theskin where a ace maker would go. and th e sz shoud iether stop or if you can not get to the VNS in time it can shorten thesz.<br /> <br />IT makes them less severe, less frequent and less in length. IT also shortens up the post-ictal time as well. my post-ictal time went from a half hr to an hr and now it is down to about 10-15 minutes.<br /> <br />hula_dancer<br /> <br />VNS REP<br />O'ahu--Honolulu--Hawi'i
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