I had brain surgery, but the sz continued and the doctors tell me I can have another surgery. But the doctors also suggested that I could also try different treatments. I am looking at the VNS and I have found the medical information and other forms, but it seems like the people are only complaining. So I was wondering if I could get some input from the people here.

Hi Justin,

There are as many responses to VNS as there are people. This site was created for patients who have been implanted for epilepsy or depression to share their experiences good and bad.

You may see more negative than positive posts...we guess that people who have had good experiences with the surgery and good responses from the VNS don't have a reason to go looking for anything.

I was implanted in May 2006 for depression. I've had some good benefits; I've also had some difficult permanent side effects (change in voice, muscle spasms in my neck during stimulation that affects swallowing and breathing, etc.)

I'd suggest you become a member to gain access to everything. Take some time to browse thru the topics...you'll find many of your questions answered there.

We welcome newcomers and are so happy to provide information they may not find elsewhere. When you've looked around a bit...if you have questions....ASK!!!

Welcome to the site! :Welcome: Oreo

:D HI justin4454! On behalf of all of us :Welcome: to the VNS Message Board! You came to the right place to ask all the questions you have and we will do our best to answer them and direct you to the right places for information. I am sure you have read about a lot of complaints, and here you will read that too, but you can also read about success stories as well. All of us have direct experience with VNS, and all the stories you can read are first person experience. Please register to become a member so you can take full advantage of everything you can access here on the site.

Please go to the main page of the board where you can find links to the Patient and Physicians Manuals. Patients are not given the manual until after implant unless they ask for them. In the manuals are tons of information about VNS including health history exclusions. There are warnings and precautions and there are side effects listed as well. Please also know that VNS takes time to work and it is not a cure all, but is an adjuctive therapy. Everyone is different and responds differently to VNS.

Also know that a lot of insurance companies do not cover VNS Therapy for treament of depression, but a lot of insurance companies will pay for it when prescribed for epilepsy. I gather your diagnosis is epilepsy, but please research to make sure your insurance will cover it. The billing codes are in the Physicians Manuals. Also know that if VNS causes you side effects that are not tolerable and/or it does not help you, there is a good chance of complete removal (meaning the generator and coils wrapped around the vagus nerve) It is not guaranted the doc will attempt to remove the coils, but there are several of us here that have had complete removal.

You may have been told that VNS implant charges are $25,000, and that is not true. Patients insurance companies are being charged double that amount, and then there are costs for each adjustment. When the battery depleats, it is not just a simple replace the battery thing-the whole generator will be replaced and it is a costly little thing involving another surgery. Battery depleation depends on how high the device is set -the higher the miliamps, the quicker the battery depleats.

I hope I am not being Mrs. Negative...I am just presenting to you some facts you can verify, and things to consider. I look forward to getting to know you, and hope I have been of some assistance to you. Please visit again and keep us updated.

Take great care!
B)

justin4454, Hi Justin, how are you doing today? I am sure you will find many people who will tell you that VNS works great for them, but my familys' personal experience with the VNS has been a complete nightmare from hell. My younger sister Judy, 45, had a vns implanted for seizure control in Febuary of last year. She has been in a mental institution since. Judy was a very respected and well liked registered nurse who was working full time to raise her beautiful 10 year old daughter by herself, and was in the process of purchasing her first home. She has a seizure disorder like I, and several other members of my immediate family have. Hers were not being very well controlled with the particular medicine she was on so a doctor she was sent to recommended VNS. Justin, I don't know you at all, but I am hoping you listen very carefully before you make your decision. Judy did all kinds of research on this thing. She worked in a hospital and had access to all kinds of info, but unfortunetly she did not do the most important thing she could have done, and that is visiting this web-site. No one knows better what the effects are and what to expect than the people who actually have one. Noone knows the impact of what it can do to your family if it does not work out then someone who is going through that hell themselves, like me. I will never have my Judy back again the way she was. This device not only increased her seizure activity but made them worse. She developed a serious psychosis which is a possible side effect, and has been in a mental institution ever since. I don't know when or if she will ever get out. She has not seen her daughter except one time for over a year. She will never be able to practice nursing again after being in a mental institution. Her home and vehicle and beloved pets and everything she held dear to her heart and worked so hard for are all gone. I am not a doctor, so I do not have the right to tell you not to get one. But I am a victim of what this device can do to your family. Not a single day goes by that I don't think about how much my sister has lost and wonder if she will ever come back to us. I miss her Justin. I miss her so much my heart aches. But I will never, ever get that same person back. The device was finally removed but the damage it has caused is permanent. Think hard, Justin. Just how much are you willing to lose? NancyB

Hi Justin4454,

First of all, I want to affirm you for researching and reaching out for support before undergoing surgery. There are so many things to read on this forum, including the Patient Manual, which is crucial that you read fully, so please take advantage of it all by becoming a member. This is usually not given to patients until AFTER the surgery, therefore we stress you read through it and ask your doctor(s) about anything you see which causes you to question this treatment.

Secondly, as Oreo mentioned, you will see testimonies by current and past VNS patients or their family members. It is important to see these as their own experience, however remember that each person is unique therefore we do not all have the same results. There have been some who have gained wonderful results, but unfortunately many have not posted much other than they are doing well or it is working. The assumption is that they don't see the forum as necessary as they might have in the beginning since they are gaining benefits, and there is validity to that thought.

And finally, there are a few things you should ask of your doctor(s):
1) How many patients has your doctor put on VNS?
2) How many have found it beneficial? What have the benefits been?
3) How many have had to stop VNS or have it removed due to side affects?
4) How long has your doctor(s) been doing VNS adjustments?
5) If VNS is non-beneficial for you, will the neurosurgeon who implants it willing to completely remove it? (Complete removal includes the stimulator, leads and coils.. not just the stimulator and leads.)
6) What methods of diagnosis will the doctor be using for future problems since the VNS does not allow MRI and there are even issues regarding CT Scans?

Also please ask your doctor to hook you up with one of his/her patients who has been through the surgery and has VNS so you can talk with someone face-to-face who has been through the surgery, healing, adjustments, etc. I did this and it helped me immensely from the beginning to the end when I had the VNS removed due to not being beneficial for me. I have changed from a neurologist to an epileptologist and am going through med changes now to see if a different "cocktail" can handle the seizures better.

And if my hunch is right here... Happy Belated Birthday! (Guessing from your name, as I am a 4th month 4th day baby too!) If I am wrong, it won't be the last time... but if I am right I could not let a birthday wish go by.

Hi Justin. Your reaction was much like mine when I first visited this board. Also like you, I wanted and needed to research everything I could get my hands on so that I could make the most informed decision possible. And in the end, that's what you have to do. Weigh everything and make your own decision. Just please be sure to examine all possible options.

As for this board, there are many great, caring people here. Those who have had great experiences and those who have not. And there are those of us who have had both. My VNS was for treatment resistant depression and it worked great. However, the side effects became intolerable and I just had it removed. I'll be posting an update on that in the personal stories thread in just a bit.

This board is not meant to scare the heck out of everyone. But it took me awhile to realize and understand that. So please feel welcome here and feel like you can open and share with the members here.

Take care.

Cheryl