Posted 7/5/2009 7:25 PM (GMT -6)
Radio Frequency Nerve Ablation
I have heard other people who have said they had the RF procedure in Canada, so probably if you look around in urban areas for a Pain Management Specialist & ask around you will find someone who does them. Sometimes Neurosurgeons also do them, though IMHO, the Anesthesiologists are better -- but I'm sure there are really good NS's out there, so just ask around.
RF (Radio Frequency Nerve Ablation) involves burning lesions on your nerves. They did mine at C1 -- the top vertebrae in my neck, on the main branch of the occipital nerve. That nerve feeds the sensory centers for most of the head. For me, they burned 8 lesions. They will burn the lesions in pairs. That way, the pain signal gets trapped in between the lesions & just bounces back & forth, rather than transmitting the pain signal to your brain. You will not feel anything in those areas if the procedure is successful. That means, they will limit it to the smallest area required for a good outcome b/c you will not be able to feel burning or freezing or anything, besides not being able to feel pain. Eventually, the nerves will heal themselves. Some people are very fast healers (for example, they cut themselves & the cut is completely healed within a day or two). Those people will typically lose the benefit of the RF in 12-18 months. Slow healers (like me!) can get relief for up to 6-8 years. The average is 18-24 months.
Honestly, if your headaches are as bad as mine were, 18 months of relief sounds like a godsend. Even if I had to repeat the procedure every 12 months, I would do it. :) It is super simple. If you are not anxious, they can do the procedure with just local anesthetic. It takes about an hour, depending on the number of lesions. They will do it under Flouroscopy (like an x-ray) to make sure they get good placement. They do do 2-3 trial runs with just anesthetic a few weeks prior to the lesioning to make sure that it works & to map out where to burn. Those trial runs will only help for about a day, but if you get relief, that is a good sign that the RF will help. It takes 6-8 weeks for the RF to kick in (the nerve takes time to scar over, which is what traps the pain).
I have heard of it being done with chemicals instead of with the RF laser. I think other members on this forum have had it done with chemicals.
Spinal Cord Stimulator/Nerve Stimulator
They will implant a battery pack/impulse generator beneath your collar bone or in your bum (you can usually choose which). That will send signals to the leads that are implanted on the outside of your spinal cord (SCS) or in your head, often behind your ears (nerve stimulator). They do a trial with just the leads implanted for a week to see if it works. If so, they will continue on to the permanent implant. You would need to plan for time off work for this one b/c it does involve recovery & a commitment to following very strict orders about moving your head & neck, and about not lifting more than 5 pounds (about a gallon of milk) for any reason for the first 2-3 months. It is not easy, but afterward, you have a remote control that controls the internal device that gives off a signal, kinda like white noise, that will cover up the pain signal. It is distracting & definitely noticeable. Many people cannot sleep with them turned on, but it gives good relief during the daytime & some people can leave them on at night. You can turn up the "volume" when your pain is increased, turn it down when you have less pain & turn it off when needed.
I know it sounds impossible to even think that you would ever have it on anything except the highest choice possible, but after several months with it on 18 hours a day on my highest setting, the pain started to subside and I am now able to go days without it being on at all. My pain is finally under control & I couldn't be happier.
I know what it's like to be practically willing to sell your soul for some pain relief. My pain was connected with a Arnold Chiari malformation. If you had that, it would show up on an MRI, but I know a lot of other people with different conditions that found significant relief from either of these options. Hang in there! I know it's frustrating, but I really do believe there is some answer for you out there. I spent all of my savings, tried things that I swore I would never try, but at the end of the day I did find these two things that helped. :) I do see an acupuncturist & osteopath on occasion for minor treatments, but they have been honest & real with me about that their treatments are for mild pain, not for the kind of severe, out-of-control pain that I used to have.
I do wish you all the best in finding a treatment that works for you. If you have any questions about either of these treatments, just let me know.