There are clinical trials you could try to get into. You can get the device & surgery for free if you are in the study... See link below for study sites.

http://www.clinicaltrials.gov/ct/show/NCT00305565

Please call cyberonics, and explain that the insurance company is refusing
to pay for the procedure and you want to know if there is any help available.

There are some programs that can help with at least part of the procedure.

I think that you might be able to get cyberonics to help with their part of
the device itself. Maybe they would even pay for 1/2 of it.

Then you could look into whether the surgeon you are looking at using
would go ahead and bill the insurance company for the procedure and
see if they would pay him for that part of it.

And lots of hospitals will help a patient with their part of the bills.

If they can't afford the bills, so you could go ahead and do the VNS,
and then go through the procedure to ask everyone for help.

But I would ask cyberonics right now if they would help you. That
way you have one part of it taken care of. And the surgeons office,
might know a way around your insurance company if you ask.

Donna

holding on is hard
 

(((((dmom))))) thanks for your suggestions. i've already contacted them via e-mail (i'm deaf), so i'll know more tomorrow. i've been waiting to do this for a very long time. i'm just too exhausted to continue. i can't get out of bed or clean or function at all. luckily, i have a very caring husband who's doing the best as he can, since he works. god, i want to live. i'm unable to experience joy, excitment, or any pleasure. it's like i'm living in hell. day to day is torture. i come online during my waking hours to escape. nothing's wrong with my life, really, since we have a dog and 3 cats whom i love so much. other times, i just stare in space and zone out. anyway, i just needed a way, since i have no more energy to put into fighting my insurance company over this. i can't even sue, either. there's no way i can handle a court system like this, since i would just shut down. somebody suggested clinical trials, i can't remember who, but i tried to get in last year, but i was excluded from the study since i had a stroke 1 1/2 years ago, which was very tiny. so, i can't use clinical trials. stupid, i know, but that's just the way they are. they want specifics, so they know for sure that nothing is influencing their datas. yes, i'm educated to the level of a scientist. i did all my research on this. i left no rocks unturned. i like to be thorough, so i'm making an informed decision. i understand a lot about what to expect and what not to expect. it takes awhile for it to become effective, so i can accept that, but i'd like to get started on this. the sooner i start on this, the sooner i can experience the effectiveness (not the timing between the implantation, startup, and the beginning of effectiveness). i'm not looking for a quick-fix, but a better management tool.

it was so bad last week, so one day, i upped my cymbalta to 60 mg., as i had been on 60mg. before and had to reduce to 40 mg. due to side effects. just one dose of that totally floored me for the whole week. the side effects hit me much harder than the first time around. it was unbelievable. ugggh. i still have side effects lingering, although they died down considerably. goes to show that it's time for a med change - again. med changes are hard on me. really hard.

Hi Everyone,
 

I haven't been on for a month or so but I did want to update you on my VNS.

You all know most of my story from here but there are things you all should know about side effects with the VNS.

I still have mine turned on at the lowest. At times I try to decide if I want to turn it up or turn it off.

I wasn't told any of the side effects but you can pull them up and they are endless. The two I am having problems with is breathing and swallowing.

At the time when I got it put in I didn't know I had sleep apnea. Actually I did from a test that was done about 3 years ago and the guy that did the test told me that I did have sleep apnea but the Dr. that ordered the test got mad because this guy gave me info he shouldn't have and refused to let me have it. I thought this and my Immunolgist put it into words for me a few months back. He confirmed what I thought. Anyway, my Immunologist ordered another sleep apnea test on me because of my CFS and not being able to sleep at night. He also ordered allergy test. I found I was allergic to grass, all trees, molds, guinnea pigs, and all flowers and dust. The allergies made things harder for the VNS use this summer. I now have allergy meds to help me with this.

Back to the sleep apnea, now that I have ran into this problem they are acknowleging the fact that if a person has sleep apnea it might not be a good thing for them to get the VNS.

When I had the sleep apnea test, the hospital really got worried about me. They scheduled another one. They said everytime the VNS went off I stopped breathing. I knew the VNS had made my breathing worse before they did the test but was still trying to deal with it on. We turned if off for awhile but then turned it back on and had another sleep test. The hospital called me and told me they were concerned about what the VNS was doing to me.

They ordered the sleep apnea machine in hopes that I could use it but I couldn't use any of the mask they brought me. What happens when I stop breathing is that I make this noise that the respirtory therapist describes as the death rattle. They decided to just put me on oxygen at this point. It upsets my PCP because he feels I really need the sleep apnea machine but right now our hands our tied. I use the oxygen. I still don't sleep all night. I wake up a lot and at times I have trouble breathing even with the oxygen.

I still haven't given up on the VNS, as I said at this point. I really want it to work but everyone is worried about me because of having it on.

As far as my depression, it still hasn't helped. The man that helped us turn it on at first did tell me that he knew of one person that it didn't help, well I am looking at most likely being no. 2. I still have all of the symptoms of the depression, anxiety, panic attacks and suicidal issues so at this point we have it at the lowest setting and don't know what to do next.

I am not trying to scare anyone. First I would find out if I had sleep apnea and if I did, I would talk to them about what their thoughts are on it.

Another thing it messes with swallowing. If I eat an apple it takes me forever to get it to go down, same with some pills and other foods. This is a side effect of the VNS that is also listed.

Everyone has to do what they think is right for them but do make sure you are completely informed on the VNS, I wasn't.

Ada

This is so disheartening Ada and I'm sorry that it's not working for you. :hug: I didn't even know this was here. I just googled it and found it that way. I was searching for people that have success stories or good results with it because I don't want any more ECTs. My memory can't handle much more of those. And I was trying to find out what happens when they turn it up.

I just had mine turned on Sept 11th and I'm experiencing all kinds of side effects especially breathing, sleeping and my throat. After they turned it on I started having sleep disturbances and they did a sleep study and found out that every time it goes off I stop breathing. So right now I'm using oxygen until the machine arrives. Like you I'm still having depressive/suicidal thoughts but fighting so hard. I heard that many don't benefit from this at all.

I'm at the lowest setting right now and tomorrow they're going to turn it up. I'm really really nervous about it because they told me something about parameter changes but for the life of me I can't remember what they said. When you had yours turned up did you feel anything happening? I don't know if it's all in my head but I think I feel it every time it goes off. And I'm afraid tomorrow if they turn it up I'll "feel" it even more.

Hi Me BP,
 

I do feel mine every time it goes off. Like you it is messing with my sleeping. I am on oxygen now and it still causes me to have those spells where I stop breathing and wake up with a jerk and I can hear that loud noise I make. The Respirtory therapist says it sounds like I am describing the death rattle to her. She is worried about me having it in and the hospital calls me to check on me. After the sleep apnea test they panicked about it.

I am so desperate to give it a try though. I go back in Monday to see my Dr. and I am going to let him turn it up again. He will get me right back in to turn it down if we have to. We have turned it up and down several times. It's at it's lowest setting right now and I have had it in since April.

As far as my depression, I am no better. I still have the suicidal thoughts and can't leave the house, don't sleep at night and just don't care about anything.

I'm sorry that you are going through the same thing as I am. I am going to try for awhile longer on mine but if I see it isn't going to work we will turn it off for good.

Another thing, when I was taken to the hospital in August by ambulance the Drs. thought the magnet to turn it off was the VNS. I was too sick to explain anything about it and my daughter didn't know much about it. I am going to have to right down some instructions for the next time I end up in the hospital.

Do give yours time and see how it does but keep an eye on the side effects. I also get choked on food such as apples and can't get my pills to go down. One night last week I ate an apple and it took 10 minutes to get that apple to go down.

Keep me up on how you are doing and do give it a little time too.

Ada

I guess I didn't realize it was going to have these effects. Or probably I forgot. It's so frustrating trying to remember things but the only thing going through my mind is I can't handle any more ECTs.

I was discouraged when I read that you had it in since April and there's still no improvement. I was hoping, I guess like you are, that this would be a miracle. But it's a constant struggle. I too can't swallow and the only way I can take my meds is to shut if off. I couldn't even imagine eating an apple. :eek:

I'm having it turned up tomorrow and it's a bit frightening, the unknown. Good luck with having yours turned up on Monday. I hope you start to see some improvement. I'm not giving up on it yet because it's too soon. But like I said, it's just a constant struggle. I haven't been out in the "real" world in quite some time and I'm not sure how to get back in the mainstream. But tomorrow my goal is to go the mall and buy my kitty a new mouse before I have the VNS turned up. Not much but it's a start. :D

Hi Me BP,
 

Make sure you come on tomorrow and let us know how you are doing. I know you haven't had yours in as long as mine but we both have to give it time.

I can't imagine going through those ECT's. They were suggested to me back in 98 but I had so many medical problems going on that my family Dr. said no. He took over my councelling to help me through what I was going through. I had heard so many stories about the ECT's that I didn't want them and my Dr. felt the same way. I did have an idiot for a Physchologist so I didn't trust him anyway.

I was not told about the side effects when this started and I didn't even think to read up on them but my Dr. and I had been talking about this for 2 years and I knew when it came out of the trial stage I would try it. I just wish I had been told the side effects up front. If you go and google the list there are at least 40 side effects from the VNS.

I have never used my magnet to shut it down because I was afraid I wouldn't turn it back on.

Another worry I had was what if I needed it turned off and my Dr. was gone but so far that has never happened. He has been good about checking on me before he leaves town to make sure I am ok with it.

As I said, I am going to have him turn it up next week but let me tell you, I will make sure he's in town until I get use to it. We have had to turn it down twice so far and I know it's a possibility it may have to be turned down again.

Let me know also if you can use the sleep apnea machine. I can't because the mask has to cover the nose completely and that leaves me to breath through my mouth and the VNS keeps that from happening all of the time.

Good luck tomorrow.
Ada

I didn't want the ECTs but since I can't take anti-ds because of mania I signed the consent form. The days of treatment weren't so bad because they put you out for them. Then the achiness and headaches start for a day or so. But now I'm having such a hard time with my memory and it's so frustrating. :confused:

I know they told me about all the side effects but I know I forgot. With each one my memory got worse and worse. I just hope it works for both of us. :hug:

I was going to go to the mall but I'm starting to panic so I'll put that off. I'm a little apprehensive being around people at the moment. So I'm leaving in a few minutes to get it increased. I'm just so nervous. :(

Hi,
 

Like you, I have so much trouble leaving the house. I will make plans the day before to do something such as go to town and then when morning comes I start thinking I'll just go another day.

There are times I won't answer the phone then everyone gets to wondering where I am.

I have trouble caring about anything. You don't have much feelings with depression. You know you love somebody but you don't feel it, it's like you are just there.

Nothing seems to matter. I'm still basically the same way with the VNS in me.

Do you get newsletters. I get one about every 3 months. I noticed this last one talked about sleep apnea now.

It's going to be interesting to see where we are in a few months with this. I don't have BP so that is not something I have to deal with although I have been around a lot of people with BP and it is a very hard disorder to control I believe even on meds. Oprah just had a show about it Tuesday.

That brings up another subject. When I first got ok'ed for the VNS I was not asked about any of my medical problems which I believe are keeping my depression from getting better. I was actually surprised that they had ok'd it for me without asking about other medical problems.

Were you asked about the BP or did they discuss it with you?

Ada