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  #1  
Old 07-07-2011, 04:32 PM
Travis from MN Travis from MN is offline
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Default Into V EEG again!!

Well, saw the doc yesterday. He wants to get me in for another video EEG (5-7 days) ASAP. He wanted to start this week. I was able to get in Tuesday... So I can still do the cabin and Grad party this weekend.

Go in, get wired up, they will PULL the Trileptal. Possibly induce seizures to make sure they occur in the area thats suspect.

THEN it gets more fun (not!). After that they want to do a SPECT or PET. A different style MRI (different how the cuts are or something) a GRID (unsure if topical or sub scalp) and Neuro-psych test to show cognitive and functions and how they are structured in my head.

If all THAT goes well it's move on to WADA and Cortical Electrical mapping/stimulation.

If it gets past the first 4 and secondary two tests it for HOPEFUL resection of the problem area...

I still see it as a possible. I'm more than willing to do it, but until the tests get done and my case qualifies I'm theoretical. HECK if I can have the resection successfully I may not need all the drugs (4 right now) and may be rid of the GM's.

I've had more GM's this year than previous years. GM's are rare for me.

So thats whats up in my world... See if I have a fun time NeXT week. Least I can use WiFi there (and headphones). The hospital even lets me order out if I want 'real food'.

--Travis
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Old 07-07-2011, 05:50 PM
jingle jingle is offline
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Hi Travis .... Best wishes -sure hope this all goes well and fast for you.

When I was scheduled for my first VEEG (2005) I was taken to MRI, then PET, then to my room to be wired for the long haul. That morning I had taken my standard dose of Topamax and Trileptal. That evening when it was time to take a dose of them, the hospital reduce the amount by a very small amount. Next morning the dosage was reduced again .... slowly they reduced both of them to 0.
Of all things - it took hideous, painful, miserable amounts of EXERCISE to make me have a seizure. They hauled me out of my room into a vicious little gym. After a nice solid seizure (after the exercise, safe back in bed) I was put back on my meds and hauled off for more MRI.
I had been told ahead of time that a WADA would not be done. I don't even know what a Cortical Electrical is.

Second VEEG (2007) was the same but I was more cooperative - I had a nice seizure without exercise.
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Old 07-07-2011, 08:17 PM
Porkette Porkette is offline
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Hi Travis,

I wish you the best of luck with all of your testing. I had all that done 17 yrs. ago before I had my brain surgery. I found the wada test the most amazing test. The Pet and Spect scan can really show a lot of detail in the brain. When I had the veeg the put the electrodes directly on my brain and then I told my Dr. that diet soda and potato chips would often trigger sz. for me so they made sure I got those foods and beverages and in no time at all the sz. started up. If you know of any food, sounds, or colors that will trigger your sz. be sure to tell your Dr. and then they might do that to trigger your sz. and the veeg won't last so long.
I wish you only the best and May God Bless You!

Sue
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Old 07-07-2011, 09:01 PM
Travis from MN Travis from MN is offline
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Recently it has been low sodium in relationship with Trileptal...In January it was likely due to a day of traveling (driving and flight) that caused a couple of them. My problem was the kidney stone was caused by Topamax and high sodium levels. I kept the low sodium diet after getting off Topa, and now the Trileptal is dropping it!!! Can't win either way.

Last time I was in I had already taken my AM dose. This time unless told otherwise I plan on taking the AM dose. I take that just after 9AM, and I'm to be in there after 9:30, so I don't want to risk it. I'm guessing they will pull the midday dose, and lower the PM dose the first day. The last time they had me off of Tegretol in 2 DAYS!! That's why I'm guessing they will go fast again this time.

The removal from the one med alone will likely trigger a seizure. If not, they can withhold a dose, or keep me up to try and trigger one. I don't have any real triggers. Flashing lights does show some abnormal activity, but doesn't trigger seizures. No known foods cause problems... I wish it was that easy for me. In the years back I often wouldn't have even one GM a year. It must have been the last 15 years when they started playing with my meds, trying new ones, adjustments etc. Before that I was well controlled and could even DRIVE.

I think they are simply running out of options for me.

The cortical mapping is along the lines of an EEG, but MUCH smaller contacts, to provide a more detailed picture of what happens where. From the little I was able to gleam about it it's rather new.

With the fact they are pulling a med rapidly, I know I will need to be in there at least 5 days. I penciled in 7 on my calendar just to be safe. We want our meds to be in control and stable before going home. 30 years on meds I know that!

Just hope I remember my password so I can log in on my hand held this time.

--Travis
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  #5  
Old 07-08-2011, 07:15 AM
Porkette Porkette is offline
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Default DNA Testing

Hi Travis,

You might want to ask your Dr. to do a DNA test on you to find out what AED's would help you the most. This is what I had done and they found out I was drug resistant. I've been on both tegretol, and trileptal and the AED's were not strong enough for me and I have absence and cp sz. I have a cousin who has had GM sz. and she always took dilantin and phenobarbital to control her sz. I'm not a neuro but I wonder if your Dr. has you on the wrong AED's for your type of sz. One drug that has worked great for me is Mysoline (primidone) I've been on it for over 30 yrs. and it has been one of the best AED's to help control my sz.

After I had all the tests done that you are having and had my surgery in 1994 my neurosurgeon was amazed that not a single one of these tests showed any brain damage on the left temporal lobe it only showed on the right temporal lobe. Sometimes the scar tissue or brain damage can be to deep in the brain for these tests to show anything. I hope that's not the case for you and that everything goes well. I wish you only the best and be sure to take a book with you or something because it gets boring after awhile. May God Bless You!

Sue
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  #6  
Old 07-09-2011, 12:49 PM
Travis from MN Travis from MN is offline
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I have a stack of books (I'm guessing close to 1600 pages) to bring in, and was able to slave my bluetooth keyboard to my iPod so I have a real keyboard to type emails and post on boards. Not to mention have over 2800 songs to listen to!!

Bad humor here: I could even listen to my library of Bob Dylan songs and likely not get through all of them. Oh well.

I know they DID pull a DNA sample for the 'group' study, but I don't think it contributed the information to my record. It was a anonymous sample. My seizures are caused by the scarring from the tumor. In otherwords, it is not genetic inheritance of Epilepsy.

--Travis
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  #7  
Old 07-09-2011, 09:54 PM
jingle jingle is offline
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I don't know a thing about a DNA sample but my neuro (sees only adults with intractable seizures ...) said that I was resistant to all the AEDs. I think there are a lot of tests I don't know or understand
I'm so glad to keep seeing this remarkable neuro even if I haven't had a seizure since May, 2006.
My seizures were caused by a grade ll Oligodendroglioma tumor in my left temporal lobe.
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  #8  
Old 07-10-2011, 10:38 AM
Porkette Porkette is offline
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Hi Travis,

It sounds like you are all set for the tests. I'm glad that the Dr. did a DNA test on you. If you want to just ask your Dr. to find out what AED would help you the best they can figure that out by the DNA and it doesn't matter that your sz. came from scarring from a tumor. By doing the DNA they will be able to match up what AED is the best to control your sz. with the least side effects. Here's wishing You Well and May God Bless You!

Sue
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  #9  
Old 07-14-2011, 09:08 AM
Travis from MN Travis from MN is offline
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I tell ya, trying to keep a number of locations up to date, plus email, isn't easy. Today in theory would be my last day on Trileptal. I had a pretty good GM I was able to signal is, and they should of had a good view of it on camera. To think today (this morning) is the LAST dose of it... Common lets get results.

--Travis
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  #10  
Old 07-14-2011, 10:45 AM
Porkette Porkette is offline
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Hi Travis,

I wish you only the best of luck and I hope you can get out of the hospital a.s.a.p. I know one time I was in the hospital fo 3 wks. when the Dr. was doing test and after test on me. I never thought I would get out.
Hang in there and before you know it you will be home. Wishing You Well and May God Bless You!

Sue
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