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  #21  
Old 12-17-2014, 06:17 PM
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I hear your frustration. With all due respect, The physicians I've met did not go into medicine for the money, they truly went into medicine in order to make a difference in somebody's life. Treatments for epilepsy have been changing very quickly in the past few years, and that's not to say that they will ever find the magic cure anytime soon, but this is where a great fit between patient and the team of physicians, nurses, Epileptologists is key.

This is a great thread. I hope it's really helping everyone out, I know it's helped open my eyes up to what others are going through out there.

Best of luck to everyone!
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  #22  
Old 01-15-2015, 06:16 PM
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Originally Posted by Kgartner View Post:
Cint - they are now referring people for surgery MUCH sooner than they did in the past, particularly for people with temporal lobe epilepsy. The consensus now is that you are drug-resistant after the failure of just 2 appropriate anti-epileptic drugs, and that after that the chance of ever getting full control with medication is just 5-10%. Given that the success rate of surgery is 70-80% in the right candidate, which is so much better than the chance of getting control with medication, epileptologists are moving forward with the evaluations much more quickly.

I am not advocating for surgery, just explaining! Again, my daughter is in a similar situation - she was diagnosed with epilepsy in Sept 2013, and we are in the midst of her pre-surgery evaluation now. This does not mean we are rushing into anything, just that we are getting the information that we need to see what our best options are.
You are right! I was diagnosed years ago. Wasted so much time with a neurologist who kept telling me to wait for that "miracle" pill. I asked him if I was a candidate for surgery and he told me NO, without even testing me. I got sick of him and found an Epileptologist at a level 4 Epilepsy center. He told me that I only have a 5% chance of getting better with medications. He started the process of getting me tested for surgery and it turns out I am a good candidate. I have right temporal lobe seizures. I'll be having surgery this Spring.
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Old 01-17-2015, 09:28 PM
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Good luck saleen! I hope the surgery helps.
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  #24  
Old 01-17-2015, 09:32 PM
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Originally Posted by Nakamova View Post:
Good luck saleen! I hope the surgery helps.
Thank you so much, Nak. I appreciate it!
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Old 01-17-2015, 09:34 PM
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Keep us posted so we can cheer you on.
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Old 01-17-2015, 09:54 PM
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Originally Posted by Nakamova View Post:
Keep us posted so we can cheer you on.
I most definitely will. Thanks again!
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  #27  
Old 01-18-2015, 12:09 PM
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Originally Posted by Nakamova View Post:
Good luck saleen! I hope the surgery helps.
I know things have changed since I had my surgery, so keeping my fingers crossed for you.
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  #28  
Old 01-18-2015, 12:23 PM
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Originally Posted by photoguy View Post:
Cint
I hear your frustration.
You do?! Have your seizures returned worse than before surgery?


Originally Posted by photoguy View Post:
With all due respect, The physicians I've met did not go into medicine for the money, they truly went into medicine in order to make a difference in somebody's life. Treatments for epilepsy have been changing very quickly in the past few years, and that's not to say that they will ever find the magic cure anytime soon, but this is where a great fit between patient and the team of physicians, nurses, Epileptologists is key.
The 1st epileptologist that treated me was one that did not go into medicine for $$. However, if you read some of the books out there and keep up with the pharmaceuticals, you will realize that they are in for helping people plus $$. I only see an Epileptologist, but even the one I see now is trying to push a new treatment upon me, even after having a lobectomy and three VNS surgeries.

Originally Posted by photoguy View Post:
This is a great thread. I hope it's really helping everyone out, I know it's helped open my eyes up to what others are going through out there.
So let's hope you keep your eyes open.
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  #29  
Old 01-20-2015, 03:12 AM
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Originally Posted by saleen View Post:
You are right! I was diagnosed years ago. Wasted so much time with a neurologist who kept telling me to wait for that "miracle" pill. I asked him if I was a candidate for surgery and he told me NO, without even testing me. I got sick of him and found an Epileptologist at a level 4 Epilepsy center. He told me that I only have a 5% chance of getting better with medications. He started the process of getting me tested for surgery and it turns out I am a good candidate. I have right temporal lobe seizures. I'll be having surgery this Spring.
Good luck with your surgery Saleen,
Hope it helps control your seizures
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  #30  
Old 01-26-2015, 09:25 PM
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While I wish anyone here contemplating surgery nothing but the best I have to say.........

OMFG I would never let anyone cut open my brain until I had tried EVERY other possible option, and then kept trying combinations of options, for a long time.

There is ketosis with a long history of bringing refractory seizures under control. There is the GARD protocol. There are lots of different meds and combinations of all of the above to try before putting your brain under a knife.

It took years for me but I found my control with ketosis plus two meds.

Surgery should be the last ditch stand when all else has failed, not something to be "sold" to you based on some arbitrary percentages. (What I mean by that is when they say you only have 5-10% chance of control, SO? That's one out of ten. Why can't that be me? Or when they say surgery has a 70% success rate, well that doesn't guarantee you won't be in the 30%)

Oh, Clint, I am so sorry for what you have been through.
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