going for VEEG tomorrow

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HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/2/2005 12:14 PM (GMT -7)   
I just wanted to update everyone.  I am going to the seizure center for VEEG monitoring tomorrow.  It is the second time for VEEG.  Hopefully, they'll be able to find the problem area this time.  Wish me luck!
Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/2/2005 3:26 PM (GMT -7)   
I'm really nervous. I'm concerned that they already have their minds made up from the last time I was there for VEEG. Fortunately, I'm going to have a different doctor. So, keep your fingers crossed
Shaun
No one left behind!
1*
RLTW


Pumpkin2
Regular Member


Date Joined Oct 2004
Total Posts : 28
   Posted 1/2/2005 4:14 PM (GMT -7)   
We are crossing all things possible. Sending good vibes and thoughts.

Donna

Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 1/2/2005 5:27 PM (GMT -7)   
Hope all goes well, I went last year at this time too .. I am also planning my next trip in.. Well it is a couple of days off anyway !! Never thought we would ever say this... but hopefully you will have some seizure activity !!! Make sure you dont sleep too much and bring lots of books !!
Dor :o)
diagnosed seizure disorder 1989
reason for disorder, angioma in temp lobe
seeking to get surgery done
keppra 750mg
zonegran 200mg


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/2/2005 7:37 PM (GMT -7)   
SHaun, I know it is so hard to go to another place and trust them to help you! I really hope this time things go well and you get real answers and help!! (veterans of 3 bad VEEGs and waiting for number 4 at a new place...)

Best wishes and all good thoughts for you! Praying for your strength....

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/2/2005 8:29 PM (GMT -7)   
Shaun, how were your holidays. I am glad you have the opportunity for the VEEG. Hopefully it won't take them too long to get what they need from you. We will be thinking of you. How many days? Hope everything goes as well as it can. Take care, Tracy
Tracy
1000 MG daily Keppra
& 3 other non AED meds
Wishing Joy to the world


Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/6/2005 7:29 AM (GMT -7)   
wishing you the best shaun. Hope the VEEG was sucessful and they got something recorded while you were there. Happy New Year and tell your wife we said Hello!! Love Tracy
[color=purple>Tracy</FONT>
<FONT]1000 MG daily Keppra[/color]

[color=gray>&]

<FONT color=gray>Wishing Joy to the world[/color]


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/12/2005 3:54 PM (GMT -7)   

Hi everyone!  Well, I've been back for about a week now.  I was in the hospital for abour 3 1/2 days.  It was the same place I went to last time that tried to tell me I have non epileptic seizures.  Even though I have been diagnosed twice.  Once when I was 5 and then again in 2002 by an army neuro.  They basically had their minds made up before I got there that I do not have epilepsy.  I "may" have had a small seizure while I was there.  One of the residents said that my EEG from the last time showed some abnormalities.  Which completely contradicts what I had been told.  However, my EEG was supposedly normal the whole time I was there both times.  The Main neuro told me that he had evalutated me without looking at my prior records.  Which is a lie.  My wife called the nurse's station and overheard them talking about my records and wanting to know why I had been sent back.  Then when I was discharged, the neuro came out of the blue and asked if I was a combat veteran.  The only way he would have known that was to look at my records.  He told me that I have Psycogenic Non Epileptic Seizures.  Which is the exact same thine I was told last time.  I asked him why my 30 minute EEg in June showed abnormalities.  He told me that EEGs are over-read.  But, he had 3 days worth of EEGs that were normal.  So, if EEgs are over-read, why should I pay any attention to the EEGs that they did?  He also told me that the pain and weakness in my left arm and leg is psycological and that my AEDs are a psycological cruch.  I don't know what to do folks.  I'm completely confused and discouraged.  I'm going in for an EMG in February AND have managed to partially dislocate my right shoulder that I had surgery on in September.  Crossing my fingers that I didn't tear the permanent suture that is holding my labrum in place.  Any advice?  Everyone has been so very supportive and given me such great information.  I NEED HELP!!

 

 


Shaun
No one left behind!
1*
RLTW


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/12/2005 8:40 PM (GMT -7)   
Shaun I am so very sorry! As you know we are fighting this also. YOU can ask for a copy of the EEG tracing and take it to a new doctor. (not the report...) I agree with you that once they make up their mind they will ignore abnormal and say it is normal....


I am so sorry it happened again.....What is your next step?

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/15/2005 11:02 AM (GMT -7)   
Thank you all for you advice. I'm just hoping to find a neuro that will accept the fact that I have already been DX'd twice. I don't have records from the first time when I was 5. I do have records from the Army. But, the EEG tracings have been destroyed already. The army is only required to keep records for 1 1/2 years. This was in 2002. Otherwise, the neuros now don't believe that I have been dx'd prior. In 2002 I was dx'd with epilepsy and a partial paralysis of the left face and palate. I don't want epilepsy. I would be thrilled if I didn't. But, the simple fact is, that I DO have epilepsy and all I want is the treatment I need. Is that too much to ask for? lol I'm running out of neuros in my area and the ONLY seizure center my insurance will cover is the center that I've been to twice now and has their minds made up that this is all in my head. They said that the left sided weakness and pain that I have "Isn't consistent with anatomy, my AED is a psycological crutch, EEGs are over-read, and I never had epilepsy to begin with. I'm feeling really frustrated and tired of hitting my head against a brick wall. Of course, maybe if I did that and got a head injury, they'd believe me. LOL I have had 14 concussions over the last 20 years. I can't imagine that didn't do some kind of damage to my brain. They say there isn't any scar tissue. But, it had to have done something....even without the presence of scar tissue in my brain. Now, they are going to do an EMG on my left arm and both legs. They are trying to see if I have Fibromyalgia or some kind of nerve damage.
Shaun
No one left behind!
1*
RLTW


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/15/2005 11:32 AM (GMT -7)   
shaun, I am so sorry that you are running out of options! Yes we have said the same thing, "we sure would love it if the kids do not have epilepsy, but they have it and one is not being treated as he should!"...so frustrating. I do not know anyone who would WANT to be on AEDs and all the side effects they produce!


Is this hospital telling you to go off your meds now? Would your insurance pay if it an epilepsy center NOT in your area? We have had to do some traveling for bettre care. I know people who have to drive much farther, though. (6-8 hours!!)....

Hang in there! Is there a regular doctor who can help you get to a place for better answers? It is really hard when you know something is going on and it interferes with life and you get no help! I have had that with my daily moderate to severe headahces, arthritis, nerve damage and sinus problems.


Hang in there!!

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 1/15/2005 11:45 AM (GMT -7)   
Yes, they took me off my AED's and I have been off now for a little over a week. No seizures.....cross you fingers. Unfortunately, I am on Medicaid. So, I can't go outside the state to a different epilepsy center and Medicaid won't pay for me to go to the others in the state unless the one that they cover doesn't offer the services that I need. So, I'm at a loss as to what to do next. Thanks for the support!!!!
Shaun
No one left behind!
1*
RLTW


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/15/2005 2:35 PM (GMT -7)   
I would say when you start having seizures go to the ER. If Medicaid gets tired of paying those high bills you can try an appeal to seek treatment away from this center! I am really so sorry that this happened to you!

There is an initial honeymoon period when you can keep the seizures away for a short time when you just get taken off meds.....

Do your VA benefits cover anything? Is there a VA hospital neuro you can try?

Sorry no real help, I just really feel for you. My son does also since he is going through this.

Emily'sMom
New Member


Date Joined Oct 2004
Total Posts : 4
   Posted 1/15/2005 4:01 PM (GMT -7)   
I just wanted to let you know that my heart really goes out to you going through what you are!!  We went through a nightmare of non-treatment for our daughter last year and it was awful.  She was diagnosed with epilepsy following an abnormal eeg, placed on aed's, then when she did not have a seizure in the 4 days she spent in the veeg unit, she was taken off her meds cold turkey and declared to not be having seizures!  It took a few weeks for her seizures to return, but once they did, they got progressively worse.  She was finally put back on her meds a few months ago and she is doing much better, but she was put at great risk during those months, and I hate so much to see the same thing happening to others!
 
If your seizures return, PLEASE get help right away (ER, etc).  I truly hope you get better care from another doctor/hospital very soon.
 
 
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