Nerve Stimulator

I just got my phone call from my dr. office, my insurance approved the procedure! I am scheduled for Dec. 6th! This will be for the temporary one. She said i will wear it for about 4 days, then if that works, will schedule the permanent implant!

Congrats Sherri! Do let us know how it works for you.

I sure will let you all know how it goes... I am really looking forward to it, and hope I'm not getting my hopes up again....

I had the stimulaters implanted in April 2010 on all 4 nerves, 2 in front and 2 in the back.. the wires are bundles together above my right ear, also bundles again inthe back of my neck and down my spine and battery in the hip. For almost the entire year the machine took care of most of the migraines, it went fro 24/7 to only 2-3 week. But then I started getting scar tissue building up and forming along the neck and down the spine. When I move my head downward it seems to pull the wires in the back and is painful, not to mention it's causing more migraines... it feels as if the wires in my head are being ping ponged back and forth with the leads on now instead of comforting. you can actually see the wires in my forehead vibrating and believe me it's not comforting at all... Now I'm also getting back spasms that are almost unbearable and I have NEVER had any problems with my back before now. My neck is so stiff it causes more problems??! When I get out of bed I literally have to massage my neck just to get it to move around.. Kinda feel like the tin man waiting for oil to loosen up... he leads on the side of my head above the ear has always had a spot where it has been opened and it feels like a wire is trying to go through it?? I went to Dr Reed in Dallas and had mine done and wish they would have told me the what ifs and some of the precautions because I dont think I would have had it done had I known how I would be now over 2 yrs like this!! .... I am also thinking about having them removed... I'm kinda worried about it and not sure if the migraines will come on full force like before or if it will be better.. has anyone else had the problem .. Dr Reed told me that there were no other complaints like this and now I'm finding out different... Anyone like me?? It's really upsetting because I THOUGHT all of this would be over and NOW IT'S ALL BACK!!!

Thank you so much for posting this, about all the problems you are having. I am having second thoughts now....Please don't feel you have spoiled something for me. I so much appreciate your truthfulness!

I probably will have the temporary thing done, but will certainly give it serious consideration now after hearing your trauma.

I hope you get better, whether it's having them removed, or something done on your behalf. Was your device from St. Judes?

TAFORSYTHE65-Sorry to hear about your troubles. Although I haven't had this done yet, I've done extensive research and met with several doctors regarding it. I have heard of other having issues with this, whether it just stops working after a period of months or years (without a detectable problem with the system), the leads migrate, the wires erode through the skin, an infection develops, etc.

Apparently the serious issues only happen a couple percent of the time. I've heard of the need to keep up with neck rotation and such after surgery to ensure scar tissue does not form that will make the wires feel tight, but to have that happen a year later is interesting. What does your doctor say?

I know one of the issues with going to a specialist such as Dr. Reed is that most of his patients travel to see him, so follow up care can be difficult. I know a couple folks from online who have had issues with their stims. You are correct that we need to do our own research in advance as doctors usually don't discuss every possible thing that could go wrong...they just don't have time. Often patients are required to sign a release however that lists these issues (pre surgery authorization).

There is a possibility that your neck pain is from your body compensating for sensations from the stim. I have figured out that my neck pain/stiffness/spasms are from my body posture as a result from the chronic pain. There is also the possibility that what you feel is an internal dissolvable suture, which sometimes don't work as designed (a friend of mine had this happen, although it was maybe a month after surgery, and thought it was a wire eroding).

It is definitely something to get immediate medical attention for though. Although with the stim you can't get an MRI, an x-ray should be able to show if something is out of place.

As for the different stim sensation, its possible that having some re-programming done will help. Its typical to need new programs quite often (from your St. Jude's rep, as that is who the Reed Center uses), to account for issues such as scar tissue and your nerves getting accustomed to the stim. I definitely disagree that there have been no other complaints.

Its unfortunate when doctors emphasize the success and minimize the problems. I don't doubt that this procedure has helped many folks, but from the info online and the limited amount of studies published, there is a small risk of major problems and a large risk of minor problems. I have a friend that got the surgery a few months ago at the Reed Center and has had some problems, and has unfortunately not found them to be very helpful. They won't acknowledge that she isn't getting the relief that she got from the trial, don't take concerns seriously, etc. She is having it removed soon. I've also known folks who haven't had a single problem and describe it as life changing...80%+ relief.

I hope you can get in with a doctor familiar with this (if not Dr. Reed or someone at his center) as well as a St. Jude's rep, to see what is going on. If you are out of state, check his list of doctors he works with as there may be one more local who is familiar with this exact procedure. If not, there are other doctors who do similar procedures (just occipital leads for example); I'd contact St. Jude's and Medtronic for those.

In the meantime, even seeing your primary care doctor may be helpful. They could prescribe muscle relaxers and physical therapy for example. If you are considering having it removed, turning it off for a period of time should give you a very accurate idea of what to expect. I'd first chart the frequency, severity, and duration of your migraines currently, so you can compare. However, I'd be hopeful with some follow up care you could get back to having the stim be helpful, not painful.

There are some good bloggers out there that give detailed accounts of their experience. I'm also on a forum for NDPH and we had a few folks go through the Reed Center and a few folks go elsewhere (http://www.mdjunction.com/ndph). I don't think any of these had the exact same lead placement (The Reed Center typically does occipital + supraorbital), but they were for headache:

http://stimulationsurgery.blogspot.com/
http://on-neurostim.blogspot.com/
http://onstim.blogspot.com/
http://headgnomes.blogspot.com/
http://learnedfrompain.blogspot.com/
http://hemicranialady.blogspot.com/

Best wishes.

Thank you for that info Kate.

I was approved for the trial. I'll have the procedure the last week of November. I actually feel hopeful for the first time in a long time. Yet I also don't want to get my hopes up.

I feel the same way Laura, you will be getting it a week before me! You better let me know how it went!

A guy local from my area, got his in Jan. of this year, and he has only had one migraine since! He had them everyday and headpain all the time. Said this is the answer and he would highly recommend it!

Good luck to you. I get mine dec. 6th!

I'll let you know. Hopefully we both get relief.

I hope you both have a successful trial! I'm still waiting to hear from my doctor on the insurance. Hopefully next week, as that'll be three weeks (I was told 2-3, but that assumes he submitted it right away). Best wishes.

Yes, St Jude is also my stimulaters... I was very impressed right after my trial period, it was 4 days of heaven and no pain... BUT..it didnt last long. It was after 8 months later that I went from heaven back to problems but actually more problems than before.. Yes the head pain has gotten better so I'm not having to take the harsh medicines I had to take before ( I was on Avinza-morphine) and so many things that I felt like a pharmacy.. I hope things work out better for you... I would like to hear from someone who has had all 4 stimulaters that haas had them for llonger than a year to see if they too have had the same problems like I have...Dr Reed was also my doctor and I traveled from Colorado to have mine done... He was very assuring before the surgery but when I started having problems he wasn't as helpful other than telling me that it was normal and noone else has been going through scar tissues, leads not working etc... I still have a spot above my ear where the skin wasnt able to make contact together to heal so for 2 yrs now I still have fluid or liquid coming out of it.. hmmmm I'm very interested to see if another doctor will take them out or if I have to go back to Dallas and have Reed do it since he put them in?? Thank you for the links I really appreciate it.

TAFORSYTHE65: You may be able to find a local neurosurgeon or pain specialist who can remove it (or advise you about reprogramming or revision surgery if you are willing to give that a try) Those blogs I posted in an above reply include reports from some folks who have tried it long term.

Sailingmuffin also replied above that she has had it for years and except for some battery and lead replacement surgeries, has been satisfied with it. Note that I'm pretty sure you have one stimulator (battery) with four leads (likely two occipital and two supraorbital), not multiple stim units. Someone with the stim with only occipital leads will be similar enough for comparison.

I've heard from very few folks whom that it worked and they haven't needed revision surgery (some studies show the revision rate is 100%). Its quite prone to having problems, but your doctor and St. Jude's rep should work with you to see if it can be resolved with reprogramming or a revision surgery. Many folks can obtain relief again with follow up care.

You can probably see any type of doctor (such as your primary / family doctor) about that wound above your ear...that doesn't sound good. So do you still turn it on? I'm confused on if you are still using it and getting benefit. Sorry you are having issues and that your doctor hasn't been helpful post-surgery. Best wishes.

I am still using it and sometimes have some relief, but mostly it's more irritation and causes more pain, especially when I have it stronger than a 4, anything more than that feels like it's vibrating and bouncing off of the lead above my left eye and the nerve (ping pong effect) It's hard to describe it other than that?? My husband can actually see the vibrating on the outside when the lead comes on.. I've had them re-program me many times and now it just doesnt work and I have been too afraid to go back to Dr. Reed after he mentioned that we may take them out... I have been trying to wean myself off the stimulater so I can have them removed but I'm scared to death of what the outcome will be.. So as you can see... I'm just as afraid now as I was 2 yrs ago.. I was hoping that maybe things would change or get better results because when I had it done it was my last resort too... and afraid again that there wont be anything else to help me! Now I have the head pain again but also with the neck & back making it miserable too..(it feels as if I'm tugging my wires out every time I move my neck up and down). I wonder which one is worse. For the 1st year I felt normal, whatever that is lol I've been "settling" and thinking this is as good as it gets and learning to live with it, kinda like I did before the surgery.. I don't want anyone to be scared of having it done cause I'm sure my body may be different than others...

I am definatley haveing second thoughts after reading your posts. I am really thinking hard and long, and praying about it. I just feel like you said, I would do anything to get relief right now. I have them every single day, and run out of triptans before I can get them refilled. I refuse to take narcotics because they only give me rebounds and I do not want to become addicted!

Well, as for now, I am going to have the trial, and I will ask the St. Jude representative (who said she will be there when I get them) what is going on for long term.... she should be hearing some feed back...

Thanks for the information though, it is reality.....

I will be praying for you, are they putting the battery in your hip? Thats where mine is.. I would see if there is another place to put if so and you wouldnt have to worry about the scar tissue building up as much down your back and wouldn't feel as restricked and tugged when you move. Definately have some questions for your dr. about what he has seen for long term and ways to avoid problems.. Thats the stuff I wish I would have asked.

I will definatly ask those questions. I am going to ask the rep from St. Judes, I have her number, and she will be there when I have the temporary one put in.

I appreciate the prayers. I really am unsure what I am going to do now.....

Update: I got the insurance denial of the trial today (the dreaded this treatment is experimental). They listed the codes my doctor submitted, and it doesn't look like it specified it was for the neck, which I've heard is FDA approved. I need to call my doctor to see if they will appeal, or else I'll do it. I was expecting this, especially since my doctor doesn't have a lot of experience with these for headache (I assume he mostly does back pain). Best wishes.

Kate,

You need to get on the St.Judes website, request a packet, in the packet is a list of Doctors they recommed to do the procedure. You then pick a dr. from the list, see him, he will decide if you are a candidate.

St. Judes does the insurance work, they know how to get them to pay. I have Highmark, PPO, she said they never have trouble getting them to pay. I would let St.Judes do all the insurance work, they know what they are doing.....

Here's a link to St. Jude's webpage where you can look for a doctor that uses their system.

http://www.poweroveryourpain.com/next/specialist

Kate,
My insurance turned down mine as well the first time but then Dr Reed appealed it and within 2 weeks they were able to get it approved for both the trial and the actual surgery to permanently install them. After they looked at how much money they had been spending on medications & dr. appts & not to mention all of the CT scans that they had to cover they finally approved it. My prescriptions a month were way over $1500.00 a month.. (DHE-45 injections,Avinza (morphine), relpax, blood pressure meds, steroids, other daily preventative meds, aznd a hand full of more pain meds. They paid the trial and it was $41,000 and the actual cost of the surgery was $197000.00 soooo now I realised why they were hesitant to cover it initially. Maybe your Dr could contact another dr like Reed to see how they actually get it approved?? I'm praying for you and hope that they can get you started and your experience is a positive one!

~Tammy

My doctor does work directly with St. Judes...I am hoping he will ask his rep what codes to re-submit. I have a call in asking if he is going to appeal / re-submit. He is actually the third doc I've seen about the stim. Yes I agree its quite normal to need to appeal from what I've heard. My guess from looking at the codes is it wasn't specific enough. It was just peripheral nerve stim and electrodes, not the part of the body. Peripheral is not FDA approved, but something for the neck is. I cost my insurance about $30k this year so the surgery would be a stretch I imagine, but I'll definitely try. Thanks!

Hi All

I have had my occipital nerve stimulator in since 2004. It helps a great deal. The last revision was essentially a replacement- in that they had to replace the leads and we decided to havae the battery replaced too. This was in 2010. It works very well.

I have a Medtronic stimulator. You definitely want to talk to the company and your dr to see if they can appeal the descision. I have had to fight with the insurance company several times. My dr was one of the drs who did a lot of the initial trials of the device and has been trying to get it approved by the FDA for years. It takes a lot of time to get things approved. I really don't know why it isn't approved. But, do talk to the company and your dr. there should be a way to get it approved somehow.

I have one battery and two leads- both have 8 electrodes. and they work well.

pain free days,
sailing

Just an update. I had the procedure to install the trial version of the stimulator today. The nurse for St. Jude's was really helpful going over how to operate it and we'll talk again tomorrow (since I was on Xanax while we went over things today). I'm just really tired and think I'll get ready for bed.

Please tell me more! I get mine next Thursday! Did it hurt much getting it put in????

Keep us posted how you do! Will you wear it 4 days? That's what they told me.

Where are you from?

I'm so excited for you, (and me!) sure hope it works!!!!

Pushing the leads under the skin started to hurt so the doctor added more local anesthetic, and then it was fine. Then I worked with a nurse from St. Jude's to program it. However, because I had so much local anesthetic it made programming the device a little difficult (I couldn't feel much). I am supposed to talk to the nurse from St. Jude's tomorrow over the phone to fine tune it. If that doesn't work I'll drive back to the doctor' office so the nurse can help me personally. The doctor's office is about 2.5 hours from my home. We are both in South Louisiana. I am scheduled to have it removed next Monday.

And thanks for the support. Let me know how it goes with you.