Radio Frequency Neurotomy (or ablation) is the application of a precisely targeted electrical field to change the function of nerves - in my case, several specific spinal nerve branches at the top of my neck, making it incapable of transmitting pain signals. A probe is placed thru the skin and muscles to the targeted nerves next to the spine in the facet joints, and the radio frequency waves damage the spinal nerve roots so that they no longer function.
Hello all. This is my first share-post here. I hope perhaps someone out there is familiar with or has undergone this procedure (good or bad) and can give me a clue what to expect, or if I should even consider it.
I had 6 diagnostic blocks done about a month ago. C2-C4, left and Right. Neck pain relief was amazing after the numbness wore off and cortisone kicked in really well. Pain relief for chronic debilitating migraines and trigeminal autonomic cephalgias, was partial. The pain I feel with headaches is mostly on the inside of my head and the blocks only affected the outside. This type of block often is reported to affect Trigeminal Autonomic Cephalgias as well as Migraine. The blocks themselves did not do much but make me dizzy, off balance and feeling like I was balancing a pumpkin (head) on my shoulders, but relief began approximately 4-6 days later. Unfortunately, it was very short-lived and I am now experiencing much more severe pain than I was in before the block. Staying out of the ER (my goal in life it seems) has become a daily struggle that is very quickly wearing me to exhaustion. My usual upbeat attitude is nearly gone, and this worries me as I have almost always been able to keep positive even in the face of my constant severe pain.
My pain doc asked me to come back in a month for a check-up, but I found out that he already has me scheduled for a radiofrequency neurotomy for which I have not yet agreed. Quite frankly, the whole situation is upsetting. I think that perhaps the doc scheduled me because he is trying to help me asap as I am in a severe situation with few visible escape doors left. Despite my intense pain and disability, I have learned that taking the time to do it right is probably the most important thing I can do for myself. After having a thyroid ablation (radioactive iodine) gone terribly wrong and finding out later that I was not receiving proper treatment before the ablation and did not actually need it in the first place, perhaps everyone can understand why the thought of undergoing a procedure of this type and in this manner might be a bit frightening for me. I've already goofed once in being the 'good patient' and doing what I was told when facing a disabling condition. Add to this the fact that I am used to Equine Nervectomies which often can go wrong as well, and I am essentially feeling trapped and afraid of making the wrong decision without enough information.
For instance: No one will tell me the potential side-effects or contraindications (I've found a few on my own including increased pain), but I know that there are some out there for everything. No one will tell me what I will feel with the procedure completed, how long it will last, if it will work, if I will end up worse off than I began, or if I will ever be able to feel my head and neck again. Research I've read states that, if it works, I will probably get between 2-400 days of relief. To me, that also means that I could have 2-400 days of "you-know-what" if something goes wrong. And the holidays are coming. Pain has already ruined so many family experiences, I am afraid I may be setting us all up for months of even worse misery and ruined memories, something that is not acceptable.
I too had a car accident, hit by a teen not paying attention! since then I've suffered severe migrains (June 3 09). I've been on pain killers and also had brain anuyrisum surgery. my head feels as if it will explode any minute. going for ra in the morning c-2,3,4,5,6. wish me luck! know one understands this kind of pain unless they have suffered w cronic pain themself. I'm a hair stylist and mother of two wonderful kids. this has made life unbearable at times! Unfortunatly my husband suffers from cronic pain, but this helps him feel mine! I can't function like I used too,and hoping this will give some relief. 
Hello, and welcome to MyMigraineConnection.com!
If you get temporary relief from nerve blocks then RFA may not be the direction you want to go in. From the information I have read, if a nerve block is effective with lasting pain relief then RFA may be something to think about.
Do you see a Migraine Specialist? That would be my next step. These doctors are experts in Migraine disease and headache disorders. Having a complicated medical situation like yours really calls for an expert. Dr. Cady in Springfield, MO is a world class Migraine specialist. In fact one of our members is there this week for treatment.
I noticed from your webpage you mentioned you had Hemicrania Continua and Cluster headaches. Hemicrania Continua - The Basics & Cluster Headaches - The Basics are both informative articles. I hope you find them useful.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. We hope to see you there. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
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If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Nancy Bonk
MyMigraineConnection.com Expert
PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!
Hello Nancy,
You pretty much hit the nail on the head (pardon the pun!)-- I do not want this procedure. I want to find the cause of the problem and fix that, not mask it by damaging or destroying a nerve that I happen to be kind of attached to. I appreciate the info tho, and will most likely hang onto it and pass it along to my hubby.
Yes, I've been to Dr. Cady's clinic in Springfield, 6 hrs away. On my third visit the doctor I was seeing declared me "too complicated" for their facility (they like IV DHE treatments which I tearfully learned was not an option for me due to Raynaud's, as well as botox which was not covered under my insurance) and suggested Mayo's with their hospital/clinic, which is not an option for me at this time. Tho I'm unhappy at this turn of events, I do recommend them there as they are very professional and caring and I know they've got many very happy patients.
I'm currently seeing a Neuro who suffers migraine and his wife also has a migraine variant (can't remember which one). He worked at the prestigious Cleveland clinic before coming here as a teacher at A.T.Still University (of Osteopathy). Because of my dystonia (a genetic movement disorder related to Parkinson's) I need to stay with someone who also knows it and it's limitations re: medications etc. I would love to have a visit with Dr. Cady himself sometime, but I understand that he is much too busy with research to see many patients anymore. The tentative Dx of Hemicrania Continua and chronic Cluster Headache fall under the category of Trigeminal Autonomic Cephalgias and are currently being tossed around (doc's just sure that's the case, I'm a little more reluctant) due to symptoms of some of my headaches and their reliable response to indomethacin and occasionally to oxygen. The Dx of migraine is a textbook sure thing with auras that are quite profound. Now that I've had the pleasure of relief of my neck pain and had the shooting, burning pains of the accompanying neuralgia return, there is little doubt now that my doc was right and that some of my headaches are also related to those issues as well. Unfortunately, they also trigger migraine attacks for me.
I remain hopeful that someone here might be able to help with their experience with RFA, and if not I know that eventually I will find something that will be useful to help with the pain.
Thank you for your information. I recently had my second series of RA's. Both times. The first time I had a damaged opcipital nerve which was excruciating, like being stabbed in the back of my head. This time it has happened on both sides, it has been a month and I still feel as if someone has hit be on the back of my head with a 2x4. Last time the Dr. at the U of U they used a high heat for a shorter period of time. My doctor moved to a private pain clinic and they have recondisered using a lower heat for a longer period of time after several people have had nerve damage. I am leaving for Sweden on Sunday and can barely stand the pain in the back of my head. The headache is better on the left side but didn't take on the right. Last time, after two months of pain in the nerve, I experienced about 3 months of relief from my headaches... they were greatly diminished. I still don't know if I should get a neurotransmitter. I do know that I do not want to go through this pain again from the RA. I have been through every option available to man, having had the headaches for over 37 years. All my neck vert. were compact crushed, both tmj's crushed as well as my entire pelvis in a horrible auto accident while pregnant. Quality of life is horrible when you experience chronic pain daily. If it weren't for my amazing family I don't know if I could endure life this way. I would love to speak to someone who has had the neurotransmitter. My doctor is amazing, Dr. Obah (he is from Nigeria) in Ogden, Utah. He is great to prescribe pain meds (which I use VERY sparingly). I made the horrible mistake by listening to a Doctor at the University that told me I should be on pain meds... I literally lost 3 years of my life before I realized that I was STILL experiencing pain but was numbed to life.... never again.
I am so sorry for all that you've endured. As I read the experiences of other patients writing here who have done RA I am more and more certain that I made the right decision for me.
Since I began this thread many months ago, some things have changed. My neck issues are increasing, and when I turn my head it feels like someone is strumming a rubberband that's connected to my occipital nerve. My DO has done about all he can do to help me and wants to refer me to a Neurosurgeon for evaluation. This is caused by either bone spurring or arthritis which has pretty much taken over my spine top to bottom. I am still determined not to destroy a perfectly good nerve, but my guess is that RA will be put before me yet again.
In my case, the neck pain can cause headaches, but those aren't Migraine. Those headaches (usually tension) are definitely triggers for Migraine however.
It's a slippery slope.
I hope you are able to find someone here who has the stimulator. If you decide to try it I hope you'll let us know here how you fare.
((Hugs)) and blessings to you in your journey toward better control of your pain...
I have suffered similar symptons- did have the RF. It was not effective for me as I had not neck pain. It was all subocciptal!! I ended up seeing a Dentist!! I had no symptoms of Tmj or any jaw pain or poping. An MRI of my jaw showed my lower jaw had lowered and moved back up towards top jaw. Crushing a pocket of nerves. Diagnosis was a a rare Tmj. Within 4 days of treatment, all of my cranial pain was gone!!!!! I have been a migrainer for 10 years and they too are resolved!
Good luck!
Dina,
May I ask what your symptoms were? I have had nerve pain, which began about 6 years ago after I would get up during the nite, to visit the bathroom. when i would lie back down the occipital area would begin to hurt. I spent 10 years in front of a computer with my arms unsupported, but have not had major trauma to my neck.
i started popping Excedrin at first (at 3am), and after losing an hour of sleep it would take the pain away.
Now, 7 years later, I have been given mountains of meds, starting with anti-depressents, P.T., chiro, which did nothing, anti-convulsants, like Neurontin, i've tried the botox shots (did nothing) and even visited the Diamond Headache clinic in Chicago which i felt was a complete waste of my time. their only answer was the DHE injections, which just made me slightly nauseous. all the meds had side effects including feeling loopy, but the pain continued. in fact, it began to come during the day, too.
i had MRI's of the brain and ruled out the "bad stuff", but MRI's of the cervical spine showed some narrowing at the C5-C6, for which injections have helped relieve the radicular arm pain. but...
the issue at my occipito-cervical C2 spine only worsens. I then found, in 2010, a neurosurgeon trained at Duke who did a radio frequency ablation of the C2 under complete anesthesia in August 2010, and after initially feeling worse, until he gave me a 6 day medrol-prednisone pak regimen, i experienced 4 months of about 90% relief. that is, no left side radiating pain from occiput up the back of the head, over the ear, into the eye pain. this pain has always been unilateral, left sided.
the neurosurgeon says he thinks i have concommitant migraines, and 100 mg Imitrex has been helpful (at 50 mg it's iffy). Indomethacin at 50 mg can help if it's not meant to be a full blown migraine, or full blown C2 radicular pain.
i just had another radiofrequency ablation RFA of the C2 done last Tuesday (i have to drive 500 miles to see this doctor and be put completely under anesthesia for it) and the pain today, 1 week later is terrible. i know there is some pain after the irritating procedure, for usually 1-4 days, until the heated nerve dies. i was trying not to take the methylprednisolone pak (6 day pak), but gave in and began it today. I'm praying for extended relief from this procedure as i'm at the end of my rope. i redid the RFA because i was again having pain every day. no quality of life left.
Preventatives like Neurontin at 900 mg makes my heartbeat irregular, makes me loopy, and I don't want Lyrica or to continue living on Imitrex. any thoughts?
L.L.