[Cerridwen35]

I began suffering left-sided ON in January 2007. Luckily, I had a diagnosis relatively soon afterward. I've undergone pain medication, chiropractic manipulation (standard and a type called NUCCA), nerve injections, cryoanalgesia & a radio frequency procedure. I'm now scheduled to undergo a trial neuro-stimulator inserted at the base of the occipital nerve. I actually had this done about 1 1/1 years ago, but I don't really remember the outcome too much. I don't think it was very helpful and the stimulator caused an area behind my left-ear to become inflamed.

Besides the above procedures, has anyone undergone any other procedures I'm missing. I know enough to understand that cutting the nerve is a last option as it can cause more pain than helping. I'm just looking for any alternative. My pain is no longer just affecting the occipital nerve. It's spread to nerves that travel over my left ear, down my forehead, along the left side of my nose and under my left eye. I have no idea what the names of all of these nerves are.

Any suggestions, no matter how strange, would be appreciated. I would be happy to explain any of the above procedures I've had to anyone needing more information. Thanks!

[EE03]

Originally Posted by Cerridwen35

I began suffering left-sided ON in January 2007. Luckily, I had a diagnosis relatively soon afterward. I've undergone pain medication, chiropractic manipulation (standard and a type called NUCCA), nerve injections, cryoanalgesia & a radio frequency procedure. I'm now scheduled to undergo a trial neuro-stimulator inserted at the base of the occipital nerve. I actually had this done about 1 1/1 years ago, but I don't really remember the outcome too much. I don't think it was very helpful and the stimulator caused an area behind my left-ear to become inflamed.

Besides the above procedures, has anyone undergone any other procedures I'm missing. I know enough to understand that cutting the nerve is a last option as it can cause more pain than helping. I'm just looking for any alternative. My pain is no longer just affecting the occipital nerve. It's spread to nerves that travel over my left ear, down my forehead, along the left side of my nose and under my left eye. I have no idea what the names of all of these nerves are.

Any suggestions, no matter how strange, would be appreciated. I would be happy to explain any of the above procedures I've had to anyone needing more information. Thanks!

I undergo nerve blocks regularly for ON. The times that my pain doctor has hit the nerve directly, the medication has traced the nerve. In my case, one of the 2 ON extends to my forehead and temple area. The auricular nerve is the one that goes around the ear. These only bring temporary relief though. I have heard of others doing botox with good temporary results, and RFA but those are only temporary too, and from what I've read, they can make the pain worse when the nerves regenerate. My pain doc has suggested it to me on several occasions and he indicated that the pulsed radio frequency is better than the standard one they use. Given that your getting anothe trial at the stimulator, I'd say go for it and hope for the best. Did you find that your pain was worse than before after the nerve regenerated from the ablation?

[Cerridwen35]

Originally Posted by EE03

I undergo nerve blocks regularly for ON. The times that my pain doctor has hit the nerve directly, the medication has traced the nerve. In my case, one of the 2 ON extends to my forehead and temple area. The auricular nerve is the one that goes around the ear. These only bring temporary relief though. I have heard of others doing botox with good temporary results, and RFA but those are only temporary too, and from what I've read, they can make the pain worse when the nerves regenerate. My pain doc has suggested it to me on several occasions and he indicated that the pulsed radio frequency is better than the standard one they use. Given that your getting anothe trial at the stimulator, I'd say go for it and hope for the best. Did you find that your pain was worse than before after the nerve regenerated from the ablation?

Thanks for the reply to my message. Actually, the pain didn't increase any after the cryoblation. Basically, when it came back, it was the same as before; however, I only got about 2 weeks relief. I had about 4-6 weeks pain relief after the RFA, but the pain was much worse than before when it returned. For a while, anytime my neck would pop, I'd have absolutely debilitating pain that would shoot up my head. When that happened, I'd scream and just drop to the floor. I just underwent the trial stimulator again. Because the doc put it a little lower, I didn't have the earlier problems. By the time he took it the trial leads out, the back of my head was virtually pain free while sedentary. I was able to move around a little more without severe pain. Now, I'm fighting with insurance over the permanent one. For some reason, they denied the permanent one before the doctor even reported my results. Health insurance is irritating! I hope you find some relief for your pain.

[EE03]

Originally Posted by Cerridwen35

Thanks for the reply to my message. Actually, the pain didn't increase any after the cryoblation. Basically, when it came back, it was the same as before; however, I only got about 2 weeks relief. I had about 4-6 weeks pain relief after the RFA, but the pain was much worse than before when it returned. For a while, anytime my neck would pop, I'd have absolutely debilitating pain that would shoot up my head. When that happened, I'd scream and just drop to the floor. I just underwent the trial stimulator again. Because the doc put it a little lower, I didn't have the earlier problems. By the time he took it the trial leads out, the back of my head was virtually pain free while sedentary. I was able to move around a little more without severe pain. Now, I'm fighting with insurance over the permanent one. For some reason, they denied the permanent one before the doctor even reported my results. Health insurance is irritating! I hope you find some relief for your pain.

If your health insurance doesn't cooperate, consider contacting the State Dept. of Ins. as they have people who can help you get their attention. Its encouraging that the stimulator is working for you. I'm still dealing with blocks and medication along with other treatments. I've had RFA's to my cervicals and at times, I've gotten a little better ON relief, but I'm now in the downward spin where the pain is starting to escalate. Best of luck with everything and I hope the stim keeps the pain at bay.

[richjobeman]

Hello,I`m not sure how to send this but I have had oc for 2 years I take lyrica and injections every 3 weeks and i was just recomended to try the stimulater.Do you think it will help.
ine has done some spreading like yours and at times i thought it was getting better.How did yours happen?

[richjobeman]

Originally Posted by richjobeman

Hello,I`m not sure how to send this but I have had oc for 2 years I take lyrica and injections every 3 weeks and i was just recomended to try the stimulater.Do you think it will help.
ine has done some spreading like yours and at times i thought it was getting better.How did yours happen?

How is yor pain now?

[Cerridwen35]

Originally Posted by richjobeman

Hello,I`m not sure how to send this but I have had oc for 2 years I take lyrica and injections every 3 weeks and i was just recomended to try the stimulater.Do you think it will help.
ine has done some spreading like yours and at times i thought it was getting better.How did yours happen?

Sorry it has taken me so long to respond, but the mother board on our computer went out. Because of the cost to replace it, my husband and I had to save up the money to buy a new computer. Anyway, I'm back online and will try to respond to your questions.

I am not sure how my ON started. In February 2007, I woke up in the middle of the night in close the most severe pain in my life. The only worse pain I've ever had was that of natural child birth to a 10 lb. baby. Anyway, neither my doctor nor I have any idea what caused the pain to begin with. I wasn't in a car accident or had any head trauma. At the time, I worked as a paralegal and spent 9+ hours a day hunched over a computer. The only thing my doctor can think of was that my desk wasn't designed for a computer so I had to lean over and sort of hunch my back. Considering I haven't worked since this started & the pain hasn't gotten any better, I'm not sure that this was the cause.

After nerve injections, cryoablation therapy, radiofrequency ablation, physical therapy, and some other stuff, my pain management doctor tried the stimulator. The first time I had the trial stimulator, I had very limited relief and my health insurance would not approve the permanent implant. About a year later, my insurance changed and my doctor did another trial stimulator where he inserted the leads in a different spot. I had a much better result and the permanent neurostimulator was inserted in February 2011. Since then, the ON pain is much better because the stimulator is really helping. However, before the surgery, my pain had began to spread from the back of my head to my forehead, down the side of my nose and under my left eye. I've since learned that this pain is traveling along an entirely different set of nerves: Trigeminal nerves. So far, the stimulator hasn't helped with that pain at all, but I am getting some relief. For now, my doctor is of the opinion that the occipital nerves were so irritated that it caused the problems with the trigeminal nerves. He hopes that by allowing the ONs to calm down that the trigeminal nerves will settle down and the pain will go away. It's been 5 months since the surgery and I'm not sure how long he wants to wait.

[Cerridwen35]

Originally Posted by richjobeman

How is yor pain now?

I know you mentioned that your doctor has recommended trying the neurostimulator for your pain. In a reply to your previous post, I mentioned a little about the stimulator. One thing to keep in mind is that the placement of the stimulator leads is very IMPORTANT. I had 2 trial stimulators before the permanent one. During the first trial stimulator, the doctor put the leads too far up the back of my head. During the 2nd stimulator trial, the doctor put the leads in my neck below the base of my skull. After the placement of the permanent neurostimulator, I had to go back to the doctor's office a couple of times to work with the technician so she could move the stimulator pulses around on the leads so the pulses would be in the exact spot that I needed them. The stimulator is a wonderful machine; however, if it's not "dialed" in to pulse exactly on the nerve or where you have the most pain, it won't work very well. Because the machine is so complex, you can control the speed of the pulses, how wide of an area on the lead that it pulses, and the number of pulses per second that the machine stimulates the nerve. I know it sounds complicated, but once you work with the technician and the device, it gets easy.

After I had the surgery for the permanent neurostimulator implant, I was pretty sore for a while. The stimulator leads were placed under the base of my skull sort of in the neck muscle area. The permanent stimulator runs on a batter which, in my case, was placed on my right side. A wire runs from the lead to the battery and I had a small incision near my shoulder blade so the doctor could guide the wire connecting the lead and the batter. My description probably sounds worse than it actually is. I had a small incision in my neck where the leads were placed, a small incision near my shoulder blade for the connector wire, and then about a 2 inch incision in my right side for the battery.

After the surgery, I couldn't turn the stimulator on right away because I needed to wait for the swelling to go down. I wasn't allowed to lift anything heavier than a gallon of milk for the first month to give all the incisions time to heal (not that I do a lot of heavy lifting anyway). I also had to wait 6 weeks before getting a massage so everything could heal properly as well.

If you are considering getting the stimulator, make sure you insist getting the stimulator TRIAL session first. I'm not trying to sound like a know it all, but I want anyone who reads this to understand the difference. During the trial session, only the stimulator leads are placed in the area where the pain is. Nothing else gets implanted. The trial stimulator will stay in place about 7 days. It will be sort of odd because a small wire will come out of the skin and is attached to an external battery pack. During this time, you can try out all the different settings on the device to see if you get any relief. Obviously, 7 days isn't that long; however, if you get even minimal relief, keep in mind that with the permanent implant, you will get more relief because you will have it for several years. If you doctor wants to implant the permanent neurostimulator right off the bat without doing the trial session first, I would not do that. If I were you, I would DEMAND the trial session first. You do not want to go through a major surgery, have a bunch of stuff put in you, and then find out it doesn't work.

Keep in mind that the stimulator has metal parts. If I go through a metal detector, I will set it off. Because of this, I have a card that I received from Medtronics (the company that made my stimulator) which I present anytime I'm flying somewhere. People who have artificial hips and knees this as well. I am glad I went ahead and had the permanent one implanted because it has helped. I just hope that the trigeminal nerve pain will eventually go away now that the ON pain is getting better.

[Peter B]

One thing that I suggest you try as well is remedial or sports massage for your neck, shoulders and back.
These muscles when tight will pull down your neck and scalp and cause the strongest pain. I thought i had ON but it was just very tight muscles.
Relieved by massage immediately, cured by taking magnesium oil daily.
With the stress that you are under, and your working conditions, your muscles will be in a bad way-there is no way they cannot be.
So regular massage is definitely called for, and you would do well to start stretching and loosening up movements every 30 minutes at work.
Computer work is producing a whole new class of disabilities.
I worked through my pain for years, and at the end was completely unable to work 2 days out of 5. The remaining days were a mixture of work, stop for pain to ease, work another few minutes, stop, and so on. I always worked with a strong burn in my right shoulder/ neck area. Painkillers didn't make a dent.
I have completely ruined my shoulder and neck from not looking after my muscles and posture.
Be very afraid!!!