I should have addressed this before I waxed poetic about my stimulator. . . . The device and surgery are expensive and upkeep, like changing the battery, means more money spent over time. I know patients who have spent between $40,000 and $60,000 for the trial and implant combined. Some people pay out-of-pocket, some people are able to use insurance, and others join clinical trials, so they don’t have to pay anything.
A lot of people on forums have said that their insurance companies are pretty cooperative. If a company won’t cover the procedure specifically, many will still pay surgery and doctors’ fees. I’ve been told that a hospital prefers to have insurance cover the device so they know that they won’t get stuck with the bill when the battery is changed or if you have problems with the device that require surgery.
Tax breaks can cover quite a bit. If you spend more than 7.5% of your income in a given year on medical expenses, you qualify for a deduction on your federal return. You may also qualify for a state deduction.
One way I justified the cost is that if it helped me so much that I was able to work, my additional salary would cover the initial outlay. This hasn’t been the case yet, but I did get some pleasant surprises in tax breaks and insurance payments. Even if your insurance company is incredibly generous, it’s a lot of money for a “solution” with many unknowns.
Thank you for the information! I really appreciate it. I have seen my gynecologist. I tried one round of HRT and it didn’t help.My insurance does not cover hrt. I just got my hormones tested again last week. I am currently looking for a specialist who accepts my insurance. It is difficult when your headache is intractable and the doctors cant help. I am working with a chiropractor and massage therapist for help as well. Please keep me in your prayers. Update me with information please.
I have seen 5 neurologists and one orthopedic surgeon. Would you have any information about doctors who install neurostimulators near fort bend county in texas? None of the medications and procedures have worked.
Hi Michelle, general neurologists have surprisingly little training in headache medicine. I’ve heard of so many people who see general neurologists with no success until they see a headache specialists. Since your symptoms aren’t typical, it will likely take a specialist to be able to figure out what’s going on. I don’t know of anyone who implants nerve stimulators in your area.
Take care,
Kerrie
One more thought, Michelle. Have you seen a gynecologist or naturopath for a hormone workup? If it is migraine and menopause-related, then hormone replacement therapy (HRT) is a good bet for managing your symptoms. Not everyone is willing to try HRT, so I’m mentioning it just in case. I’ve talked to two friends just this week who are managing menopause-related migraine symptoms successfully with HRT.
-Kerrie
I live in texas. I reside in Fort Bend county. I have been diagnosed with cervcal radiculopathy. I have been to 6 specialists; including orthopedic and neurosurgeons. They have all told me that my pain is not a neurological problem. They said surgery is not indicated. I have pain all over my head with a lot of vertigo. The pain is mostly on the left side of my head,neck and shoulder. I have weakness in my left arm as well. I am also going through menopause. The doctors cant give me a reason for all of my symptoms. I have a hard time sleeping and eating. I haven’t been able to work in a year. I have difficulty with my balance and thinking. I have been tested for numerous conditions with no answers. Could this be menopause related? I get tired all the time and cant fo anything outside the house for very long.
Hi Michelle, have you seen a headache specialist? Your symptoms sound very much like migraine, which can get worse with menopause. I’m not a doctor, so I can’t give medical advice. I think your best bet would be to see someone who truly understands how complicated migraine can be and the many symptoms it can cause. Best of luck finding an accurate diagnosis and relief.
Take care,
Kerrie
My wife was part of a study for a ONS for her migraines about 9 years ago in Utah. The device worked like a champ and had to be removed because it got infected. We live in North Carolina and her pain doctor said she should have one put back in. The problem is it is so expensive here. Duke wants 250k cash as insurance won’t cover it as the FDA still says its investigational. Any ideas where we can travel to have this installed? We have money to do it but not 250k. Thanks
I had the occipital nerve “cut” and extraction from the right side of my head, and don’t be fooled, just because it is cut doesn’t mean it will stop pain completely. What happens is that the nerve thinks it needs to send a signal, and it still sends a signal-a pain signal. If it becomes inflamed, like the head of a cauliflower, it is even worse. Make sure they bury the “stump”, the end of it, in muscle tissue. This is supposed to help. I had this done at Georgetown. He equated the continued, but lessened pain, to something like phantom limb pain.
After being diagnosed with SLE 10 years ago, my migraines got worse and came more often. After having taken avery medication on the market either orally,rectally, nasal, nerve blocks and botox, it was time to seek further treatment. I found a study being conducted at one of the top hospitals here in NY. I met with the Neursurgeon running the study and he said I was the perfect candidate. In Aprill 2009 I had the procedure…what a change in my life. I actually had my life back. Approximately one year later I had the leads moved higher towards the crown of my skull, so tha the stimulation wrapped more around my head. Now almost 8 months later the battery has died. I will ve going in on 1/3/12, to have a new unit put in. Because this is a research project, the host of the project will not pay for a rechargeable unit(one of the major down falls of being a test rat), which means in 3 years I will require another replacement. Hopefully by then something new will come out. I am also looking into having the occipital nerve cut to stop the pain completely. Johns Hopkins in Maryland performs that procedure. All in all, doing this has been a god send. If you have questions, please feel free to reach out to me at grneyedraven@yahoo.com. I will be glad to help calm your fears. Happy New Year and Much Health and Wealth.
After nearly 5 years of doctors telling me there was nothing wrong with me and no explanation for the constant 24/7 pain on the left side of my head I finally found a pain specialist that seems to know what I am living with. I was diagnosied with ON this past year. I have pain on only the left side of my head that is a constant 5-6 pain level with sharp, jabbing pains periodically that exceed 8/9 pain level, enough to make me jerk my head as if I can jerk away from the pain (smile). I have had 4 ON Blocks in the past 11 weeks. They seem to diminish the pain for the first few days then it is back. Dr. wants me to consider ONS. I’m really scared…sounds like a pretty major surgery, expensive and unknown outcomes. I only have a very basic health care policy so I’m sure little if any of the procedure would be covered. This site has been very helpful in getting the patients point of view. Thanks everyone for taking the time to post.
Barbara,
I experience the same symptoms that you are experiencing. Mine are a result of a broken neck on October 2009. My neck was fractured in two places and it is a miracle that I survived and am able to to do as much as I can (for which I am extremely greatful).I have accepted the fact that I will likely need a cervical collar indefinately, am no longer am able to drive and must use a walker but the occipital nerve pain is making my life miserable! Nerve blocks only work for 2 – 3 days so my neurosurgeon suggested I try an Occipital Nerve Stimulator. I have had my reservations about having the stimulator implanted and am glad to hear comments about the stimulator. At this time I wonder if it is even worth a try. I welcome comments – both pros and cons.
I have had severe nerve pain that affects the inside of my r inner ear and radiates up and inside the R side of my head. This has went on for over 6 years. I take opiates and morphine that doesn’t always work. I haven’t been able to work for over 2 years due to the intensity of my pain. The symptoms are: extreme burning and tingling and electric shock sensations. This pain ruined my career and I have lost everything. I was an RN. After reading these comments, I see that their will be alot of out of pocket expenses and also that it doesn’t always work. Do you think this procedure would be right for me? Keep in mind that I am on medicare and live on a fixed income and only get disability so I would not be able to afford alot of medical bills. I already pay alot for doctor visits, meds and medicare. I am on a fixed income and it would be considered low income so I don’t have money for these out of pocket expense. Please reply
Barbara smith
Hello all,
I started to do research today on ONS, because I suffer from hemipelegic and basilar migraines. As of now medicinal treatments and physical therapy as well as routine visits to the psychologist are not helping me at all. My neurologist suggested an ONS, but I am unsure of what it is and how it works. I live in Cleveland and go to the Cleveland Clinic.
Hi Darlene i got the stimulater put in in Oct also. Yes lots of jaw pain.Lately i have had a migraine for 2 wks i think it is caused by the stimulater. Any one else have this. I have occipital neuralgia not migraines.
I have had an occipital nerve stimulator for a year now. I was having severe rt sided headache 24/7 for 2 years. I have had about 85% relief of my headaches with the stimulator. I do have occ soreness at the generator implant site in my chest, but that is more to do with my activities.I also have a connection that has been loose since shortly after implant that causes some stimulation at the generator site, but I have gotten used to it and hardly notice it anymore. It was decided to leave it alone until the battery needs changing rather than risk other surgical problems. I would definitely do it all over again.
Ive had the new mini ANS stimulaterin for occipital neuralgia or severe migraine, for 12 days. Not much improvement and alot of jaw pain. Has any one else had this jaw pain? It has helped a little maybe 20%.
I had the stimulator implanted a week ago in London, so far all is well with the migraine side. But the discomfort i am having with the pack in my tummy is making me stress, i thought once the clips were out it would be better but i am so uncomfortable.
Has anyone else has this discomfort and if so will it go and if so how long will it take. Many thanks Jennie
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I can’t remember how long the pain was intense, but the area was sore for at least six months. When I told my doctor that the surgery and battery gave me more pain that I expected, he told me that most patients say that.
I hope your pain doesn’t last too long. I’m glad to hear that all is well on the migraine front.
Kerrie
Hi Thom, I couldn’t help but feel paina nd discomfort while reading your entry – I know you wrote it months ago – but I hope I can still help you. I have an occipital nerve stimulator for the third year in a row. The first two years were symptom free, the device worked perfectly without any difficulty whatsoever. Last month, wile slated to get the usual one-year unit, I entered the surgery dept. when I was surprised with the news that they were giving me the 7 year one. When I was in recovery, they tried to program it, but found it was defective and I went under the knife again a month later. I have been back and forth to the doctor’s office to turn in faulty programming devices and to have the system programmed because there was some kind of glitch. No one has been able to give me an explanation as to why this happened. I am both furious and depressed about this. It has been a long battle. I had a Medtronics unit the first two years, no problems with either unit. I now have an ANS (note, not with my approval) and it has been nothing but trouble. I’m thinking of writing the FDA. I can’t see your questions/comments right now (not a computer guru) but I hope I’ve shed some light on the subject. Mind you, I am not sure whether the responsibility falls on a shoddy surgery team or a company with a faulty ONS. Be well. Feel free to write me. Jane
Franco,
The two treatments operate differently, but nerve blocks can be effective in treating headaches. That’s really all I know. Talk to your doctor about a nerve block and if he or she thinks it will help you.
-Kerrie
For the past several months, I’d been considering the possibility of getting the occipital nerve stimulator for my intractable migraine. Still, my research isn’t complete, but the above information on the financial ramifications is most helpful. I know now that unless my insurance covered it, I would be unable to pay for it myself.
I was wondering if the Blog author or anybody knows if the occipital nerve block has a simular effect to the nerve stimulator. I know the occipital nerve block is only a temporary thing, lasting 3- 4 months. But to my thinking that would be no big deal—I’ve never been afraid of shots, and would only have to go back 3 or 4 times a year on a quick out-patient basis. Also, importantly, I know for a fact that my Medicare insurance does cover the nerve blocks.
With me, if I could get my pain level down to a daily 3 {on the 1-10 pain scale)— that would mean I would be able to work again, at least part-time. Presently, with potent pain medication, I am holding my own with a daily 4 or 5, but the pain medication becomes less effectime as time wears on. Living alone, I am barely able to keep up with my basic daily chores as things stand. And my social life has suffered terribly at a daily level 5.
All I want to do it seems is nurse my head in my “spare” hours. But I am hopeful that with the advent of neurostimulators and improved technology, that there is a future for all of us Thom and Jayne PAYNES.
Regards
Thom Payne -or-
I have tried the test unit snd it worked great. It took mine down to a 3. If you ins. will pay for the test for 5days then your ins. will pay to have it put in which I am having done tomorrow. Best of luck.