Looking ahead to surgery, but fear is setting in.

Nakamova

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Woohooo!!!!!!!!!!!!!!!!!!!
:clap: :clap: :clap:
 
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Congrats Bigman! ( I never thought I would congratulate a Giants fan !) I hope to be having surgery soon and your story has helped reduce some of my fears, as well as get me pumped about the future!
 

BIGMAN131307

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Thx gang. :)

@ Karenhanby

Just be sure to get all the tests needed. Make sure you fully understand you situation.

Where your seizures are coming from left or right side(s).
Focal point location(s), is it located close to your vitals. - memory, sight, hearing, etc.
Percentage / chance for a improved condition - no seizures, fewer seizures, etc.

The biggy, have confidence in your surgeon. The surgeon should be willing and able to answer all your questions involving the surgery. Without feeling rushed or pressured.

Good luck, I hope your results are also good. :)
 

Music36

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Karenhanby,

What type of surgery do you plan on having? I had laser ablation surgery last year. It's less invasive than a traditional lobectomy. I just want you to know there are different options for some people if you're a candidate. In other words, not everyone who is a candidate for surgery is a candidate for laser surgery. The other thing is laser surgery is not available at all hospitals that perform epilepsy surgery, yet, b/c it's fairly new. The first one was done in 2010.
 
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BIGMAN131307

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The seizures are still at bay. :) I just have headaches on occasion. But that is common, and I am used to them. The summer will bring more of them. :( I just need to keep cool, stay away from stress, etc. Hopefully I can get out for some relaxing fishing.
______________________________

Later this week I go back to the gastroenterologist. :( Now that will be a interesting visit.
Hopefully I will get some type of results. So far this one hasn't helped me much. Just dumping a FODMAPS packet on me. Telling me do this, and I'll be fine. :(

Maybe round two with this gastroenterologist will be different.
 

Nakamova

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Yayyyyy!!!!!!!! Keep up the good work. :)
 

BIGMAN131307

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Well my second visit with this new gastroenterologist went so/so.

Initial labs were good. No issue found. That means more trial and error, :(

Well I at least got an appointment with a Dietitian that can help me with the FODMAPS. :)
But not for three months. :( Until I was recommended to try a Probiotic Supplement and Psyllium Fiber. Hopefully one or both may help. Start a food diary, and continue doing the FODMAPS as best as I can do. Down the road a new colonoscopy, and possible CT scan.

Well that's a bit of progress. Hopefully my insurance will at least help cover some of cost of the Probiotic Supplement and Psyllium Fiber. If not it will be a long three month wait. :(
 

Music36

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Today is the one year anniversary of my surgery. As tough as recovery was for me, I definitely say it's worth it. I still have auras, but nothing else. Also, the auras have decreased.
 

BIGMAN131307

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Months!!

No seizures, just some headaches. I bought some of the Psyllium Fiber. So far I haven't tried it, yet. I need to wait to have a quiet week, so I don't get caught off guard.

Well I was able to get out fishing for a few hours a couple days ago. It wasn't to hot, with a nice breeze. :) But that same breeze hurt the fishing action. :(
If I was out in a boat my luck would have been better.
 

masterjen

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Many congrats, BIGMAN!!! Sorry about the poor fishing action, though. Did you catch anything at all?
 

BIGMAN131307

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Sorry about the poor fishing action, though. Did you catch anything at all?
Just a little sunburn on my hands. lol

The main thing was I was able to get out there. :)

Now that my seizures seem to be at bay (knocking hard on wood), I'll should be able
to go more often.
 

qtowngirl

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karen i second everything bigman has said on this - but want to UBER second him on having confidence in your surgeon. this is a person who will have your brain in their hands - very literally - and it is a 'bond' that will never leave you. we all have a neurologist (even some of us lucky enough to have an epileptologist), have all taken tests, all been put on meds, etc., but only a select few are lucky enough (and severe enough unfortunately) to be a surgery candidate. i still have the odd simple partial seizure, but just passed my 3 years grand-mal-free, with my '3 years since surgery' date coming up in a few weeks :) this surgery is life changing, and putting every trust possible into your surgeon is key. all the best my dear, *smile* on whatever route you choose to take.
 

Blonde Angel

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Months!!

No seizures, just some headaches. I bought some of the Psyllium Fiber. So far I haven't tried it, yet. I need to wait to have a quiet week, so I don't get caught off guard.

Well I was able to get out fishing for a few hours a couple days ago. It wasn't to hot, with a nice breeze. :) But that same breeze hurt the fishing action. :(
If I was out in a boat my luck would have been better.
The psyllium aims to provide the bulk, its good stuff.... :)
Congrats.
 

BIGMAN131307

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I haven't had a chance to yet. Too much running around to do. I don't want to be caught out without a reliable bathroom. I'm looking to try it later this week. I plan to use the lowest dosage, then go gradually from there.
 

BIGMAN131307

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27 months+ and counting. :)

No seizures :), just had a bad headache these past few days. :(
This 85-90 degrees hits me hard.

I have been using the psyllium fiber for about two weeks. It seems to help "some",
but I could have more improvement. Hopefully when I see the nutritionist next month,
I'll get the help need.
 

EDBRAD

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Hey Bigman
Sounds like you are doing good in the seizure dept. Thats great news. Glad you are not down here in Texas, its been hitting over 100 degrees every day for 3 wks straight now. Finally got a break yesterday with some showers-temps plunged down to lower 90s.
Keep up that psyllium fiber, it will eventually help.
Well I may be following you down that surgery trail. Ive got one more test, the WADA test next week, then find out at the end of the month if I am a candidate. It may be just termites up there. I knew I should have spent the few extra bucks on a nice treated walnut brain, but just got the cheap pine crap from Home Depot instead. Oh well
You take care of your self Bigman
Ed
 
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