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anyone develop occipital neuralgia after cervical fusion

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:24 AM in Neck Pain: Cervical
wondering if anyone has developed occipital neuralgia. I have browsed the net and come to conclude this is what i have on my left side. pain starts at base of skull and i get shooting pain every so often to front of head.

i think it is from tight neck muscles. i am still in collar and i am seven weeks post op. i see NS on thursday oct 30.

anyone develop this seven weeks after surgery?
does it sound like occipital neuralgia?


  • It is so dangerous to try to diagnose yourself, so try not to get too worried about this until you speak with your doctor. I know I have scared myself to death by self-diagnosing.

    That being said, I developed trigeminal neuralgia post c-spine surgery. My symptoms are facial numbness and cold sharp stinging in half of my head that eventually leads to a major migraine. it is always on the right side. I am told that this comes from the trigeminal nerve. There are medications that can help with this, and I am sure the same would apply to occipital neuralgia.

    You are so recent post op that I wouldn't be concerned at this point. There were a lot of nerves moved around to do the ACDF, and it sometimes takes months for them to settle down. I know it is difficult to be patient, but there is a huge array of symptoms post op, and most of them settle down with time. Be sure to discuss it with your doctor at your next appointment.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • i always call my NS to report symptoms. he has told me numerous amounts of times that if "we do not call back that means do not worry about it". nice reassurance eh??

    i will see him on thursday so hopefully he will have answers.

    as per your reply . . . .i guess i think i am a speedy healer. expecting to much to soon i guess. i also had posterior fusion so i know that there were a huge amount of nerves and muscles chopped up.

    thanks for your reply anyway.
  • I developed occipital neuralgia from a motorcycle accident where I hit my head on the car that pulled out in front of me and then again on the pavement. It was treated quite successfully for many years with anti-seizure meds. It was easy for the neurologist to positively diagnose with a simple nerve block.

    Cindy is right, please don't self diagnose. Especially if you have a NS who is open to you calling with new symptoms. I'm sure on Thursday he will help you make sense of many things.

    I have had 2 posterior surgeries at C1 and C2 and I can say without a doubt, that surgery in that area of the spine is the most uncomfortable I have ever experienced and it took the longest for me to begin feeling better from.

    Hang in there,

  • I see in your signature line that you had a spinal cord injury. I too have a cord injury that at first put me in a wheelchair, but thankfully I am walking again. What happened to injure your cord? Please share your story.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!

    ok glad u asked about my sci because i know i was meant to tell it.

    i fell backwards in my basement after i washed the floor. i slammed my head and neck againt the tiled stairs. i had complete numbness form the neck down. thank God i recvoered after abot five minutes.

    i took myself to an urgent care clinic here in Ontario. i told the doc whad happened. he took x rays of my back only despite the fact that i was complaining about neck and back pain.

    he said "your spine looks great. u can continue your training for your marathon. take ibuprofen for the muscle tightness and u will be fine".

    so off to the gym i went.

    two months later i slipped and fell in the casino in Vegas while on vacation. same thing happened except i did not recover form the numbness form the neck down as quickly. i regained full motor and sensitivity to left side but the right side not so fortunate.

    i was hospitalized for a week in Vegas and no one knew what to do with me. i was given a diagnosis of os odontoideum--- c2 seperated from dens most likely at birth. therefor i was a walking time bomb since birth because this section of my spinal cord had always been exposed.

    i was given this diagnosis along with a $20,000 hospital bill and sent home in a huge neck brace. i could not walk or even balance at that point.

    thank God my boyfriend came to rescue me and paid that bill. (i was reimbursed BTW. i apparently had great benefits through work that i did not even know about).

    i went to see NS here when i got home (Ontario, Canada). he told me that i needed surgery to fuse c1 c2 becasue a minor car accident or slight injury and i'll be dead.

    with news like that i agreed on the surgery.

    in the meantime i was meditating, praying and asking God to return my function to my right side.

    six months later, two fusions at c1 c2, a hell of a lot of pain, lots of determination and persistance i am almost fully recovered. i still have a bit of numbness to my right thumb and pointer finger but that is it. (other than the above mentioned symptoms which just started).

    i know the universe and God were telling me slow down. i was always on the go and going like my hair was on fire. i have learned lots about myself and life these last six months. i was forced to ground myself and reassess my life.

    i will eventually run that marathon but i will not put off the most important things in life to go train.

    i will keep in touch with everyone here about my progress.
  • haglandc
    thank u so much for your reply. i could not find anyone who went through what i did. wow . . .so glad u came along.

    i had my first surgery july 03 2008 then again sept 09 2008. the second time around i had all kinds of strange symptoms. the scariest being popping creaking snapping in my neck. pain . . . .OMG . . .don't even want to go there.

    however i recovered . . .well i hope so. i still have a long way to go but hopefully the worst is over.

    i was really lucky because my girlfriend works in the OR with my NS. she was in on my surgery. she is a great reassurance for me. u know those days when u just need to hear "the screws and rods are in place . . .do not worrry . .. it's going to be ok. . . ." i have needed lots of that lately.

    i recall the bone graft slipping after the first surgery and i have real bad anxiety about it happening again.

    so far so good. i see my NS on thursday and i will keep u all posted.

    love this site and love everyone here. great support and super stories.
  • I went in for a C2 ganglionectomy and when I woke up in ICU I found out I hadn't had the complete surgery due to complications. Just what everyone wants to hear, especially when I was nervous going into it. 8 days later they went back in and completed the surgery and wound up removing a portion of C1 as well. I don't have any hardware from those two surgeries in the category of screws, rods, etc... however I now have two percutaneous leads laying on my spinal cord inside my c-spine that are driven by the spinal cord stimulator implanted in my hip/butt area.

    A week or so following my hospital stay for the 2 surgeries I was hospitalized again unable to walk, balance, hear well out of my right ear ... I wound up with nerve damage due to complications during the surgery.

    Six months later my neck was atrophied terribly on one side and hypertrophied on the other. My scapulas are now winging and my shoulders have atrophy as well. Without my SCS I wouldn't be able to function much due to pain in my neck, shoulders, arms and hand.

    The reason I bring this up, is that many people have read where I post about having had a C2 ganglionectomy for Occipital Neuralgia and they want to have it done. The good news is, the surgery was successful in treating the ON. It's the side effects and complications that are a bear!

    I know that you are not one of those who is looking for a quick fix for occipital neuralgia. No one can have any work done on C1 and C2 and be willing to let a surgeon cut them open there again for a LONG LONG time!!! But, there are many many conservative ways to treat it. For 5 years, I never felt it as long as I kept taking the anti-seizure meds as prescribed.

    You have overcome a lot of adversity in such a short period of time. My hat is off to you. If there are any questions I can answer that may help make things clearer or may help give you more questions to ask your doc ... don't hesitate to ask.

    Keep on healing!

  • "C"

    wow . . . .amazing what people go through. i could not even imagine the NS telling me "sorry we only did some of the job" . .. . . brutal.

    i was forgot to mention that prior to my first surgery i was also in halo traction for four days. NS did not know if he could do the posterior approach or if he would have to go through my mouth. talk about a scare.

    he said the only way to determine the approach was to do the halo traction to see if the c1 c2 would align a bit more. i guess i really messed it up when i fell in Vegas.

    thank God it did. i sucked it all up and went through that halo traction. it was human torture. one of the nurses even elevated the bed while i was attached to the weights.

    everything happens for a reason and u live and learn.
  • You are so right, everything does happen for a reason, it's just that most times we don't understand what the reason is until long after it happened.

    Wow, I don't know if I would have been able to do the halo traction without going insane! I would have gotten the name of that nurse and "elevated her bed"!

    When they woke me up after the first surgery, I wanted to know how everything went and if the detox was also over ... lots of questions. It was "supposed to have been" at least 2 days later. I was scheduled for the Ganglionectomy followed by rapid detox under anesthesia. Neither had been completed and my heart sank. Instead I had had an emergency angiogram after a bleeding episode ... yadda yadda yadda

    That's all behind me now and I am very very glad it is! I look at it this way, at least I can help relate to those who have had to endure posterior c-spine surgery.


  • There are 2 theories to ON. One is that the nerve is trapped by muscle spasms in the neck as the nerve enters into the foramen. The other is actual damage to the nerve through injury, such as blunt force trauma. I have both and went in for a fusion because my neurosurgeon PROMISED IT WOULD ALL DISAPPEAR. To make sure, I also had a C2 neurectomy, but they could only do a partial because of complications. The partial felt fabulous and has lasted almost 3 years. The rest of my head is killing me. I had 9 occipital stimulator surgeries, 7 with major infections. The stimulator worked, but the lead wire moved, and I kept getting infections, which cost me about $400,000 of my own money with insurance. I get the nerve blocks, but they wear off and just had a radiofrequency, which has not worked yet.

    People, especially doctors, do not realize how crippling and debilitating occipital neuralgia is. They just think, "Oh you baby, it is just a headache." To me it feels like somebody is bashing my head in with lead pipes while ssticking an icepick in my head simultaneously. If anybody has any suggestions, please post. I am allergic to a lot of mmedications, and when I am having an attack, pain medications do not touch the pain. I end up running all over Orange County trying to get my head injected. Getting tired of this. The pain is more debilitating than all other mproblems I have, which are great!

    To those who suffer as I do, I can really feel for you.
  • i hope both of u find support here that helps u. i had no idea that this even existed. i do wish both of u sucess in your treatments and also i will pray for u and your families. good luck.
  • To Haglandc,
    Ive got one spinal fusion at c7-t1 then about 6 months after my surgery I was hit by a drunk and totaled my car. Now my C-6 and c-5 are both damaged but not quite needing surgery. Ive got ON so bad that it has made my life a living hell. I was wondering what medication (anti- seizure) that your on. Ive tried everything possible and still cant stop the pain.. plz help
  • I'm sorry to hear that you are having such a tough time of it. Severe ON is no picnic and I really wouldn't wish it on my worst enemy.

    For the first 5 years my ON was treated very successfully with Neurontin and Carbamazepine. At one point the Carbamazepine was switched out for Lamotrigine.

    For a couple years after that, I was medicated with these drugs plus many opioids.

    In 2007 I underwent a C2 Ganglionectomy which relieved the majority of the problem and I was detoxed from Opioids. I still take the Neurontin and Carbamazepine.

    Complications from the ganglionectomy have caused me tremendous cervical and shoulder problems. The pain from that is now controlled with a Spinal Cord Stimulator.

    Now they offer the Spinal Cord Stimulator for severe ON.

    Feel free to PM me with any questions.

  • I get these headaches after driving on bumpy roads for several hours (most of Arkansas state highways these days).

    I'm a C3-7 Incomplete (now 15 years post accident)
    C5-7 fusion 1995
    C4 fusion 2004
    C3 fusion 2006

    If anybody wants my story, just ask, PM me or e-mail me.


  • I am experiencing severe pain on my left side, and shooting pains throughout my head. I had a fusion of c1/c2 with a bone graph from my hip. I am wearing a hard collar 24/7. I have an appt with Neurosurgery on 11/18, so I will try to find out what it is. I don't know if it is because I have been trying to ween off the pain meds, or something else. I have RA, which is what led to this condition. I was told the same thing, get surgery of become a quad parapalegic or die possibly. So, off I went. I am barely 4 weeks into recovery, and l am unsure what my future holds. My family found a spinal fusion machine, and I just emailed my Dr. to find out if I could use it. It is a spinal pak II. Have you ever tried one?
  • I find your post most interesting! I am about 3-4 weeks post opp with a 2 level neck fusion. I have had a good recovery so far with no pain after the 2nd day. I did however dropped something on the floor off the arm of my recliner and without thinking jerked to the left and turned my head with the hard collar on to the left about 5-6 inches in a fast motion. It hurt for awhile but the pain stopped by the second day compleatly. The next night I had a headace that went from the top of my neck in back wrapped around the side and was behind my right eye. This headace went away by the next morning and has not returned. I dont think I damaged anything as the pain has not returned but I will watch it and if it does I will mention this to my NS. I looked up this Occipital neuralgia on line so I know what to look out for I see there also are treatments for this. I will wait and see but I think I just pulled a mussel or 2. Nonsurgical Treatment

    The goal of treatment is to alleviate the pain. Often, symptoms will improve or disappear with heat, rest, physical therapy including massage, anti-inflammatory medications, and muscle relaxants. Oral anticonvulsant medications such as carbamazepine and gabapentin may also help alleviate pain.

    Percutaneous nerve blocks may not only be helpful in diagnosing occipital neuralgia, but can also help alleviate pain. Nerve blocks involve either the occipital nerves or in some patients, the C2 and/or C3 ganglion nerves. It is important to keep in mind that repeat blocks using steroids may cause serious adverse effects.


    Surgical intervention may be considered when the pain is chronic, severe and does not respond to conservative treatment. The benefits of surgery should always be weighed carefully against its risks.

    Microvascular decompression involves microsurgical exposure of the affected nerves, identification of blood vessels that might be compressing the nerves, and gentle displacement of these away from the point of compression. "Decompression" may reduce sensitivity and allow the nerves to recover and return to a more normal, pain-free condition. The nerves treated may include the C2 nerve root, ganglion and postganglionic nerve.

    Occipital Nerve Stimulation uses a neurostimulator which delivers electrical impulses via insulated lead wires tunneled under the skin near the occipital nerves at the base of the head. The electrical impulses can help block pain messages to the brain. The benefit of this procedure is that it is minimally invasive and the nerves and other surrounding structures are not permanently damaged.

  • I had c5 c6 fused in September of 2008. I thought everything was going fine. Then about 6 months ago I started having a popping sound in my neck where the surgery was done. Has anyone had this problem? I also have very severe pain in my right shoulder and scapula all the way up to my neck. Anyone have any ideas what might be going on? I am hurting so bad cant even work do to pain.
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