Those with occipital neuralgia have jabbing pain in the areas of the greater or lesser occipital nerves, or the third occipital nerve. The pain, then, is usually in the lower back of the head on one side, though it can spread to other areas. Usually there’s also tenderness over the nerve.
Often occipital neuralgia is tricky to diagnose, and it’s often misdiagnosed as migraine (or perhaps we could say that the occipital neuralgia is triggering migraine attacks?). A full neurological exam is taken, your specialist will try to get an understanding of the pain and other symptoms (such as dizziness or photophobia), and check for tender areas.
Treatments include physical therapy, heat, medications, radiofrequency thermocoagulation (RF), stimulator implantation, and nerve blocks.
Surgery is also helpful. A recent study out of Washington DC, USA focused on patients who had chronic migraine from occipital neuralgia. A subset of surgery focused on the relevant occipital nerves called neurolysis was performed on 206 patients.
43.4% experienced complete headache relief, and 80.5% experienced at least 50% pain relief. These are good numbers, especially considering that most of these patients likely have migraine that may be triggered by other causes. There were only two patients with complications, and they were minor. (full story: Indications and outcomes for surgical treatment of patients with chronic migraine headaches caused by occipital neuralgia.)
If proper diagnosis can be done, this may be a treatment that can help a lot of "difficult to treat migraine patients". If you’ve had this surgery, we would love to hear your comments.
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{ 19 comments… read them below or add one }
I hope some patients who have had surgery will respond because I’m continuously looking for feedback from other patients. My doctors think my migraine are being triggered by occipital neuralgia. I’ve had most of the treatments, but not surgery or a stimulator implanted. Both seem so drastic and scary, but I’m not sure I can live like this and not try everything I possibly can.
Hopefully medication and other technology will continue to improve treatment of chronic pain conditions. While surgery or implants are not an option for everyone, for me it was last ditch effort to stay off major heavy duty pain medication, which could not actually control my highest levels of pain.
There is a video of a gentleman name Bobby Sorrell who had a successfull stimulator implant for occipital neuralgia. It was done for and by the Texas Trigemenial Society I think.
http://www.youtube.com/watch?v=T2TvRL8BXpk
I have just received an implant under a headache study for a different condition (not occipital neuralgia), and while I have had pain reduction its too early to tell if I will have lasting or complete effect like Mr. Sorrell or if it is just wishful thinking on my part! The surgery was outpatient, the pain and discomfort minimal. They only used minimal “twilight” sedation. I was able to walk 4 blocks back to my hotel room after surgery.
I am having the surgery on the 18th August after over 2 1/2 years of consistent pain.
We fought our insurance company and won. It’s a $74k surgery so Providence did NOT want to pay for it. They denied the surgery using the excuse that is was an experimental procedure. We managed to get it reversed.
Anyway, I can write more after the surgery. The first week will be the trial.
After waiting and praying for this now, of course, I am terrified. Terrifed it will make the pain worse.
I can write more if anyone is interested.
Take care.
cm
Hi, Cathy! I’m waiting right now to see if my insurance will approve the surgery for me. I don’t feel very optimistic about it, but who knows. Maybe they will.
Hi,
I had the surgery the trial for Occupital Neuralgia Stimulator on 8/18/09 (2 day’s ago) at Oregon Health Science University (OHSU) my surgeon was Dr. Burchiel. They did only the left side since that’s where I had a blow to my head almost 3 years ago. Since Wednesday my the back/left of my head head has been numb. I wish it would have stayed numb. I was put to sleep for the surgery although every other medical person I met told me I would be awake until the very end when I finally saw Dr. Burchiel and he said nope asleep. After I woke up the nurse offered me 2 vicodin for the surgery pain (only) she made very sure to clarify between head pain and new incision pain. I refused the vicodin due to finally being feel of them. So, when I woke up after the approx. 2 hour surgery a Medtronic rep. came in to meet me. He was in scrubs and was also apparently had been in the operating room w/me. I was asleep before I went in the OR and before they but the breathing tube down my throat so that was nice but it felt like a lot of lost. Anyway, I was confused as to why he was wearing scrubs & even why head be in the OR but didn’t ask as I was just waking. So, he went over the arrows on the Palm Pilot size device I’d be caring in my pocket for the next week. I had the long cord coming from the back of my head, an incision and small cord (the cord later to be implanted permanently) taped up behind my neck up were my hairline meets, and a pinkie sized device taped behind my left shoulder. The device on my shoudler now is waiting go, I guess, between my front left shoulder and left breast. This well occur durring next week’s surgery.
So, the most important part is what happened when the Medtronic rep plugged me into the device that I could hold in my hand and control with 2 sets of arrows. Control what??!! Do you know? I did not know! I have had read tons, tons, talked to several doctor about this procedure and watched all the Medtronic video’s. I must have missed something.
What the device does is it replaces the pain (the 10 on the pain scale head pain for me every day all the time) with a type of electrical current. If you turn it up too high it makes you jolt and it’s very painful. It’s a bit like needles poking you all over your head, or in my case, all over the left side. At first it felt like I was replacing one pain for another. But, like I said I just got this done and it HAS TO work. I have to work with this machine and get use to it. If anyone has feedback I would love to hear it.
Medtronic’s told me the battery back in this stimulator lasts from 3-6 years. And cost $40,000!
I also wondered how you would ever get this out of your body. Surgery obviously but the cost??! Maybe you never would. It cost us $74,000 to put it in. It can’t be cheap to take it out.
I hope this helps or makes some sense to someone. I am still in a lot of pain but still hopeful that this well work and very grateful to have the opportunity to get the surgery.
Like I say before. We were denied by our insurance co. And had it reversed but you must go thru all the denial of your insurance co. fist. fyi.
Best wishes,
Cathy
Cathy: Hope you have good results on your trial. I had my trial in May, implant on 6/30/09. The permanent implant did not seem to really “kick in” effectively for me until 7 weeks after surgery, but I did not get it for occipital neuralgia. I was told that it takes 8 weeks to heal completely, so I guess that timeline makes sense.
The reps from the stimulator manufacturer [I was told by my surgeon] go into the surgery to program and check the stimulator to make sure it is in the right place and is working properly. They then go over the settings with you post surgery. Because I am on a clinical trial, I do not have the full set of programs on mine yet, but you should get those right away.
Hoping the stimulator will bring you some measure of relief. Congratulations on fighting an insurance company and winning!
I suffer from Occipitical Neuralgia and Cervical Dystonia and have been in Pain Management for 3 years in which I receive regular nerve blocks and botox injections along with heavy pain meds in order to function on a daily basis. I reside in Huntsville, AL and am a 51 yr. old female.
I have had 3 consecutive spinal surgeries and am fused, grafted, plated and screwed together due to DDD and a car wreck. I am now addicted to Oxycotin and Lortab. I watch the clock religiously and count down the minutes until I can have my next dose. I have never known such pain as this but live with it day after day. I also have severe nerve pain which pulsates down my arms into my fingers and also my toes. Feels like I am having a nerve conduction study all the time. I cannot tolerate to scratch my scalp or brush my hair sometimes and the right side of my face feels like it is drawn up so tight with spasms…my jaw aches, behind my ear aches…along with the ice-pick constant sharp pains in the back of my head.
I need a CT Guided Nerve Block desperately. It used to be the only proceedure that would take the edge off this pain, but the only Neuroradiologist in town moved and I am in serious pain.
I cannot get an appointment with any Neuroradiologist in Nashville or Birmingham for some reason…my pain Dr. has tried for months as well as myself and I cannot get anyone to even call me back.
Can anyone tell me how to get in touch with a Neuroradiologist? Also…
how do I get a referral for any surgery out there for this condition?
I have researched nerve stimulators and new experimental surgeries being done but have been told that my nerve damage is too close to the occipital artery. Does anybody out there have any suggestions? I own a business and can no longer operate it due to this condition. I sleep with an ice pack every night on the back of my head and a heating pad on my cervical muscles. I am in bed in pain more than I am up these days. I cannot imagine living like this the rest of my life.
*! I just was recommended for an implant and had NO IDEA how hideously expensive it was! Guess I will live with the pain. I have ON with chronic migraine. I have had 3 nerve blocks and nerves burned on C2,3,4 & 5 (which helped with the neck and arm pain). Now I haven’t a clue what to do! Glad to meet others who have a nightmare with ON
Marlene: There is another experimental external device they were trialing, that you put against your head/neck. I don’t know what it is called, but you might research. It may not be as expensive as the implants…
Maybe you can get into a trial like I did – worth checking out – I could not have afforded this either without getting into a trial study. The added bonus is that I get a lifetime of replacement batteries/operations for participating in the trial.
Cindy,
My heart just aches for you. Do you have a friend or family member that would be an advocate for you? With all that you are going through you need someone to fight for you. Someone who will attend and drive you to your doctor appts, find a doctor that will go a step beyond and help you, refer you to the right places, fight your insurance co, etc, etc, etc. I pray you have someone that will help do this for you because you are worth it Cindy. Please hang in there because there is an end to this long, long tunnel you are in and it will be pain relief, I promise!
Respectfully yours,
Cathy Malk
Thank you for the input… it helps. The constant pain is really inpacting my life. I work at home and I think sometimes that Drs think I am less of a priority. My family (frankly) is getting quite tired of Mom being inert or downright out if it. I have to go for a recheck at the pain clinic and to discuss the implant…. there has to be another way!
Hi I don’t know if anyone will read this, but im just glad to know that im not the only one with this problem. Not that i would wish this on even my worst enemy.
Im 22, and i’ve been fighting this for the last year, alog with being increadbly sick all the time, chronic vomitting,diahrrea,migrians of course, and even passing out/blackouts. Its scary. Its like i had my life just whipped right out from under my feet. I had a job, friends and everything a 21 year old should have. Then i got sick had to be rushed to the ER and have an emergancy gallbladder removal, and its been help on earth since. That was last October.
And now my life consits of always being sick always being in pain, and it never geting anybetter. I’ve gone throw doctor after doctor just to hear the same thing…”i don’t know whats wronge with u, but thanks for your money”.
Thank the Lord for a doctor saying i can’t help u but i know who might. I got a refurle to the University of Washington in Seatell. And in 3 visits they sent me to a nero and she did some test and came to the conculsion that i have occipital neuralgia.
FINALLY a name for what i might have. It might not be whats been making me throw up 20+ times a day but its a frist step. You have know idea how scary it is to think that no one can help u that ur just waisting ur money on all these doctors who don’t want to actully give a tricky case a try or anything, unless u’ve been there.
Its a very hard road to walk down. I’ve become a shut in basicly because now im a broken record. I can’t do the things i love or like, i cant even lift a full or half full milk jug with out falling to the floor from the pain of it and throwing up everywhere. its not pretty.
but im just greatful that someone is tryin to help me and not just passing me off to someone eles cause they dont want to deal with it.
so anyways, im in the very early stages of my diagnosis but im hoping that if it is that it can be dealt with soon. im SOOO done with being the sad sick girl!!!!
thanks for your time.
Alicia: Hoping you get relief from your occipital neuralgia. Teaching hospitals are great resources for people with unusual ailments.
Not trying to diagnose your nausea problems, but had trouble after gb removal myself, and you might ask your U of W doctors about.
There is something also called post cholecystecomy syndrome that some people get after gall bladder removal:
http://emedicine.medscape.com/article/192761-overview
Also there is a problem called Sphincter of Oddi Dysfunction that some people who have had their GB removed have:
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=7AB086B0-AB01-446E-B011-2E67CAFEF96D&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF
Alicia,
Wow, you are going through a terrible time and I am so sorry. I have the the same diag. as you but not all the same symptoms. Are you on any pain medication? You don’t mention if you’ve had an injury but I did and that’s what started my pain (on the left side of my head). Anyway, I recommend you contact Dr. Kim Burchiel at Oregon Health Science University in Portland Oregon. He is the best for implanting the stimulator for occipital neuralgia. Here’s his phone number for an appt: 503 494-4314. His assisant Todd is a bit of a jerk but don’t be put off by him. Alicia, I completely understand how you feel about money wasted on doctors not knowing. I went through years of that! It was so, so horribly frustrating and depressing. Every week I would try something and someone new. I wasted thousands of dollars. I am so sorry you are having to fight this but you will get through this and it will end! I promise! Is it possible something may have gone wrong with your gallbladder surgery? Just a thought. Wishing you all the best.
Cathy
Thanks Cathy. Its great to hear back from someone. The only injury i had before this was i was hit by a car when i was like 4 or 5 and i’d never been in this much pain. I wasn’t hurt too bad by that.
This just came on all of a sudden, out of the blue. Its almost like a bad present that u can’t return because u don’t have the receipt lol
I’ve tryed all kinds of pain meds, an none of them have worked. It seems like nothing takes away this pain. I was taking stuff like excedrin and tylonel and such and my nero doctor said that she wanted me to try all natural pain relevers and to give my body time to get all the other chemicals and such out of my system. ITs not been a happy time.
I thought it might have been something that went wronge with my gallbladder surgery too, but i’ve had colonoscopys,upper GI’s,Xrays,ultrasounds,and i even had to eat a raidoactive hamburger XP, i didn’t even get a super power…at least when peter parker got bit by that spider he got to be spiderman lol. But its all come back normal, nothing left in, nothing extra taken out, all is clean.
Thanks for the number. i’ll look into it more!
~alicia
Hi Alicia,
I am so sorry about your pain. You have looked into so many things. Don’t give up….do you have a friend or a family member that will advocate for you? I know how hard and it is and really impossible when you are in pain to search for answers on your own. You are so strong. You are smart too and that will work to your advantage. I know you will beat this Alicia!
My prayers are with you.
Respectfully,
Cathy
Thanks Cathy! Thank u so much for your prayers. I know that we go through every thing for a reason, we may not know what that is while we are going through it, but God will never let us go through any more then what we can handdle, and he will always give us away out.
Yes i have my mother and father, and my soon to be husband and his family who are always there for me. I’m so greatful for them and for all that they do for me, its just alot to handle not only for me but for all of them as well.
so I’ve been denied for both the stimulator (even though I used my lien for the trial -basically paid for it myself, and had a very successful trial) and the nerve decompression. Ok so I have to appeal, but what is it that made the ins. co change their minds? did you produce certain articles? data? Help?
I saw the message from Cathy on August 8th regarding the insurance company denying the procedure and appealing it until it was overturned. My husband has dealt with this pain since 2001 – has had numerous procedures, 2 fusions, stimulator, pain pump, and nothing seems to take the pain away. We are in the process of a motor cortex stimulator but was denied by the insurance stating it was experimental. Can someone give me some ideas of how to get this decision overturned?
Thanks and will be looking for your ideas!