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GUEST-galpal
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« on: July 24, 2008, 03:59:41 PM »

I have a 41 year old mentally handicapped daughter who has been having seizures since the age of 1 1/2. At age 15 they discovered a brain tumor and she had surgery. They gave her 2 years. At age 35, she had surgery again for the brain tumor. It was down graded to a grade I from a grade III malignant glioma. Her seizures have never been fully controled but are down to one or two a month and there are some times when she has a run of them that can last for hours. Starting as grand mal and then slowing to partial onset. She also has weakness on one side due to the surgeries so uses a walker. She resides at a residential facility and recently has been having some behavior problems. We aren't sure if they are due to her surroundings or something else since we don't see them when she is home visiting. She has been diagnosed with depression and possibly bi-polar disorder. The facility where she resides wanted to put her on lithium but before they could do that, there had to be blood work and an EKG. The EKG showed her rhythms were normal but also showed some heart damage due to a possible heart attack. We decided to hold off on the addition of the lithium until after she is seen by a cardiologist but now her neurologist is really pushing for the VNS because of the seizures and the depression. After reading some of the post here and even before that, I had my reservations about it. We have done some research on it over the last couple of years but whenever we would mention anything negative that we had heard, we were told that the doctors just don't know how to adjust it. We just don't know if it's worth putting her through the surgery and adjustments with all the possible side affects we have heard and read about. Does anyone who has the VNS out there, also have a brain tumor? We have only heard from one who does and she is still taking all the same meds, her seizures have changed and the battery has to be replaced every 3 years. We would like more input if anyone can help. :Help:  
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Dispatch
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« Reply #1 on: July 25, 2008, 07:38:13 AM »

:Welcome: GalPal.  

I would encourage you to become a member so you can get the full benefits of the board by reading peoples success and horror stories.

You will be able to access the Physicians & Patient Manuals right here on the site as a member.  I encourage you to read them, ask a gazillion questions, and research, research, and more research.  VNS is known to cause heart issues, so I would really ask a lot of questions regarding that.  It is also unapproved for use in a person with a traumatic brain injury, but I'm not sure if a brain tumor is classified as a TBI.

Again, welcome to the board, and please register as a member so you can do a bunch of research and visit with people with 1st hand experience with the VNS.

Dispatch B)
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
labrat
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« Reply #2 on: July 26, 2008, 02:02:37 AM »

Welcome to the board! :Welcome: As stated above, get yourself a screen name, what you have is fine, and choose a password. That's all there is too it. A whole new world will open to you. You will probably fine answers to questions you have already here.

Please become a member. It offers so many more benefits. :D  
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Birdbomb
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« Reply #3 on: July 26, 2008, 04:23:41 AM »

Your daughter has a laundry list of medical problems!  It has been my experiance, as the owner of this site, and I have spoken to 100's of people worldwide about VNS, that the more problems you have the LESS likely VNS will be of any benifit.

I have had several members who like your daugher, had many issues, every one had dismal results and on top of that the side effects became a life long issue.

It sounds like the facility is looking for a "quick fix" and VNS is a far cry from that description!.  It is ADJUNTIVE therapy.


Quote
4. WARNINGS ________________________
Physicians should inform patients about all potential risks and adverse
events discussed in the VNS Therapy System physician
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #4 on: July 26, 2008, 05:59:59 AM »

Maybe you've already decided to become a member to gain access to a gold mine of info regarding personal experiences with all aspects of VNS.  I hope you have.

I'm sure researching the safety and efficacy of VNS for your daughter is on the top of your list.  Since the insurance/monetary aspects can be just as tricky to figure out, I just can't help, even at this early stage, letting you know that the "battery replacement" that Cyberonics talks about is actually a complete new generator implant.

When the battery reaches EOL (end of life), a new surgery has be be scheduled and the entire generator is removed and replaced with a new one.  Despite the fact that Cyberonics often tells people the entire surgery including the implant and all hospital and physician fees will be around $25,000......the generator itself costs more than $23,000.  So, in 2006, my total costs were over $47,000.  That does not include post-surgery routine doctor visits to monitor and adjust the dose....anywhere from $90.00-$300.00 a visit.

My implant was for depression, and I do receive some significant benefits.  I also have a number of uncomfortable, sometimes painful side effects.  I am also still battling with my insurance who approved my surgery...paid for it...and then two years later took back their payment and are trying to make me responsible for over $47,000 in bills.

The posts you've read here will certainly give you the idea that there is a lot of research to be done...and unfortunately most doctors and their offices are poorly informed about the true risks involved.

I wish you luck...hope to see you on the board!
 
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The most successful people are those who are good at plan B.
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galpal
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« Reply #5 on: August 05, 2008, 02:28:56 AM »

Thank all of you for your feedback. I did register at the time of my post but not sure if it has been approved yet. Will I receive something telling me that I have full access?
We have pretty much decided against the VNS for our daughter and have an appt. with her neurologist in Sept. which we were suppose to get pushed up, but figured it would be more of the same with him wanting us to go ahead with it and not wanting to try anything else. I am grateful to this website though since I will go to the next appt. armed with a lot of info against the implant. None of which he has ever addressed when speaking to us about it. When we have questioned different things like so many we have heard of who got no relief from seizures or the need to replace the unit in as little as 3 years, we hear the same thing, " their doctors don't know how to set it right". That leads us to believe that her doctor is the only one in the world who does and what happens when he retires??? In weighing the pros and cons, I just can't see where it would be worth it to put her through all that is involved, when there is no guarantee that it will help and may even cause more problems than she already has.
I will continue to research it on this site until her appt. and will certainly be printing out much of the info to take with us.
Thank you all so much again for your words of experience.
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Birdbomb
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« Reply #6 on: August 05, 2008, 09:50:08 AM »

I didn't see your registration in queue, please  take the time to register again.
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #7 on: August 05, 2008, 03:41:45 PM »

Just registered again. Hope you get it this time.
Thanks again.
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