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HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 6/30/2006 7:57 PM (GMT -7)   
Well...I FINALLY got my diagnosis!!!  WOOHOO!!  Intractable epilepsy is what my neuro said.  He wants to send me to get a 3rd VEEG for VNS. It's been a long road.  Take care.  I'll check back in later.  I hope everyone is doing well.
Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 7/13/2006 7:45 AM (GMT -7)   
Jennifer,
 
No, I don't have the VNS yet.  Will probably find out at the end of Sept. if I'll get it for sure or not.  But it's looking very very likely that I will.  My  neuro told my insurance company that he was strongly considering me for VNS since I am not resoponding to meds.  I am now on 3 Topamax 100mg's 2xs daily, klonopin .5 mg's 2x's daily and now Lamictal 100 mg's 2 xs's daily.  Still having about 5 seizures/month.  Still better than the 6/week I was having.  But, he told me that he doesn't think he'll be able to ever get me anywhere close to seizure free with just meds.
Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 7/24/2006 6:46 AM (GMT -7)   
Weeeell, my appeal to my unsurance company to go to a different seizure center for VEEG for the VNS was denied.  So, it looks like the VNS is out for now.  My neuro doesn't have any other ideas.  I found out that the neuro he wanted me to go see there is taking part in a clinical trial for a device that is like the VNS except instead of wires going to the vagus nerve...they implant them in the Thalamus.  It's called the Intercept Epilepsy control System.  It has already been approved for Parkinson's and Essential Tremors.  So, I'm keeping this as an option.  Not sure I want wires attateched to my brain.  but if it's what I have to do to be seizure free...that's what I have to do.  Also, I have applied for a seizure dog.  My application is being reviewed as we speak.  I should hear something betweeen now and Aug. 8.  Keep your fingers crossed.  The only down side is that the dog may cost up to $6000.00 and I'll have to travel 6 hours away to train with the dog for 3 days.  But the up side is I'll get the dog and all it's benefits AND it's in my home town which I haven't seen in a number of years.  So, everyone keep your fingers crossed.  LOL

Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 7/24/2006 7:37 AM (GMT -7)   

Jennifer,

I have done a pretty good deal of research on VNS.  However, anyone with actual excpeirence with it would be better than numbers and data. 


Shaun
No one left behind!
1*
RLTW


Lucia
New Member


Date Joined Oct 2005
Total Posts : 8
   Posted 7/25/2006 11:29 PM (GMT -7)   
A VNS, or those similar is a big deal and that is something you really need to think about before you decide that route. I understand it may be what is right for you, but the risks are incredible.... it is brain surgery. My father had one done for Parkinson's. Unfortunately, he had a stroke a couple days before it was to be turned on. As a family we discussed the risks, and a stroke was a possibility and went for it regardless, but now I think, my father whom is bedridden and will not last the summer probably, I would love to be able to talk to again...I would undo that risk. I think about this one all the time. The risks we take, anything can happen and it is a gamble, but we need to really think about that before we leap.

I wish you the best, I know this isnt easy, I am spending a lot of time playing med roulette right now. Take care

Lucia

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 7/30/2006 9:35 PM (GMT -7)   
Well, as it turns out, VNS is not an option right now anyway. My insurance company denied my appeal to go to a different seizure center that is out of network that my neuro wants me to go to. So, I don't get the VNS. On the up side, I should hear whether or not I get my seizure dog on the 8th of Aug. It is looking very promising. So, everyone cross your fingers. I really need it. I had a very hard seizure the other day that the dog could have really helped me. I was the first person awake and I had a seizure in front of the couch. apparently poured a travel cup of hot coffee all over me. But, no one heard me seize. So, I was laying on my back for who knows how long. When my middle son woke up he found me literally drowning in my own saliva. My wife said the coffee that had spilled was ice cold. The dog could have saved me a trip to the dr. and alot of fluid in my lungs by going and getting help much much sooner. Keep your fingers crossed.
Shaun
No one left behind!
1*
RLTW


HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 8/27/2006 9:45 PM (GMT -7)   
Hi everyone!  I finally have some good news.  I have just been approved for a seizure alert dog!  I will hopefully have it within a month or so.  This dog will allow me to regain a large portion of my freedom back.  I'm sooo excited!


Shaun
No one left behind!
1*
RLTW

Post Edited (HALO) : 8/27/2006 10:48:10 PM (GMT-6)


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 9/12/2006 3:00 PM (GMT -7)   
Cool Its great to hear that. I never had a seizure alert dog. I also wasn't responding to my meds to take for my seizures and they were getting worse. Thats why I went to surgery. It may not be for everybody, but I am so glad that I did it. I hope everything works out for you.

A friend

Ken
Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.

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