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Occipital nerve blocks didn't last - What next?

jrtwildcatjjrtwildcat Posts: 7
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical
My wife has severe occipital neuralgia. Or at least that's what we think it is - severe neck pain at least. The pain started at her upper neck and spread to her face, back, legs, arms, etc. We aren't sure the exact cause, but it is likely from a craniotomy that she had several years ago to remove a benign tumor. We think it might have damaged some nerves when they cut her noggin open.

Anyway, two months ago she had facet injections and nerve blocks, x-ray guided under general anasthesia, with lidocaine and cortisone. The short acting lidocaine actually completely took away all her pain for the first day. We took that as a good sign that they found the source, which we think is the occipital nerve. Since they did the facets I guess we can't rule that out either though. It took about a week of pain and time off work to recover and for the cortisone kick in, but they ended up giving her a good 6-8 weeks of relief. Unfortunately, now the pain is back just like before. It started back at the neck, and like before, spread elsewhere.

We're going to see her doctor again on Friday for next steps. She's pretty bummed that they only lasted this long and now the pain is back.

I've been reading of all the other options - more injections, radiofrequency ablation, decompression surgery, gamma knife, etc, etc.

Anyone who has been in a similar situation have any advice or things to ask the doc? All of the procedures seem to have risks and benefits. I suppose they might just want to do injections again, but I'm not sure how often we can keep doing those.


  • Get a MRI done and they can tell you if she will need surgery.
  • She had another MRI done recently. They said that there wasn't anything they could see that would be causing the pain. Evidently her muscles were so tight that they caused her spine to be too straight (lacked normal curvature) but other than that nothing out of the ordinary.
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  • Back from the doc, ended up scheduling her for more injections for Monday. Since we don't know if the occipital or facets were what worked, they're going to do occipital, wake her up and see if they worked, then if needed knock her back out to do the facets. The hope is that these last longer since the pain hasn't been set in quite as long.
  • I went through the gamut of occipital nerve blocks, facet blocks and injections. Then went on to RF Ablation. All of that was temporary relief with the return of the pain exacerbated as if we had angered the nerves by trying to calm them down. I then had a C2 Ganglionectomy which took care of my head and neck pain but did not address my shoulder, arm and hand pain. I then went through a spinal cord stimulator trial and then permanent implant of a spinal cord stimulator. It is an awesome device that deals with a tremendous amount of my pain. I now use no narcotic pain medications. I use Neurontin, Celebrex and several different muscle relaxers on a rotating schedule. I have returned to working, gardening, riding horses, doing just about anything I want to.

    I had to keep having faith that the docs would find a way to help me. And through diligence they did.

    Hope this helps.

  • Thanks C - glad to hear the stim has been working for you. My wife is a bit scared of the prospect, but we've talked to a few docs about it. Seems like if this next round doesn't last, it might be worth at least doing the trial run to see how well it would work for her.
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  • jrtwildcatjjrtwildcat Posts: 7
    edited 06/19/2012 - 8:56 AM
    Quick update, sounds like we're going to go the decompression surgery route. My wife got a call back from Dr and he said she's a good candidate. Really hoping this is the right choice.
  • I had similar issues. Especially when you said that as far as the MRI went, the doctors said they didn't see anything that would be the obvious caus eof her pain. I didn't have the usual symptoms that people complain to their doctors with when they have neck issues. At first my biggest complaint was my left trapezius muscle hurting real bad all the time but got a lot worse when I sat at my desk at work. I spoke with a neurologist that literally told me that he didn't know what the problem could be because he "didn't do shoulders". So I made an appointment with the orthpedist surgeon that had operated on both of my husband's shoulders. I explained to him the pain / spasms were in my trap muscle and also caused pain in my neck. Get this! He told me that he didn't know what could be causing it specifically because he "didn't do necks"! I thought to myself, "Are you kidding me?!?!?! They are connected people! How could you go through all the schooling to be a neurologist and a surgeon and not have ever studied the adjacent areas??
    After more MRI's on my neck and then on my shoulder the orthopedic surgeon said that I had a small labral tear in my shoulder and that the muscle spasams could be due to me compensating for that and trying to hold my shoulder in place. So he recommeded surgery to fix the tear.
    During the surgery he also cut off the end of my collar bone because he said it had arthritis on it and he found my bicep muscle had become detached so he re-attached it as well.
    After some pretty painful physical therapy and 3 months off work ( they said I couldn't come back on light duty and for me to just wait until I was 100% ) the first day back at my desk for a few hours the EXACT pain came right back. That was in March of 2008. I went in and had more cortizone injections, trigger point injections, more physical therapy and this time they started with traction and even had me do it at home. But nothing was working.
    Up until this time all my pain was in my trap muscles, neck and head. But then came the time that my right arm started aching so bad I couldn't stand it. It felt like it weighed 350 lbs. I call every doctor I could trying to get an appoinment but none could get me in for at least 2 weeks! I ended up going to the ER. They gave me a shot of Dilaudid but it did nothing at all. But I think the trip to the ER was how I got into a neuosurgeon office a lot quicker. He did another MRI (this is the same doctor that about 2 years previous said that I would probably need a 3 level fusion one day) but this time he said looking at the MRI pictures, "well we could go in and take out this piece of bone and see if that works." I thought to my self, "If you are going to put me under and cut on my neck, we are going to be pretty sure what the problem is and that this is the best way to fix it. Not just a 'we'll see' kind of thing." So I found another doctor, This was an orthopedic surgeon who specializes in necks and I knew a couple of people who had gone to him or the other doctor in that practice.
    Because I still didn't present with the usual symptoms he wanted to do more indepth test to make sure of the proper course of treatment. I went though another MRI, a nerve conduction test, a mylogram, a discogram (aka discography) which used dye and was followed up with an MRI which coul dpick up the dye.
    Finally, we had an answer to and a solution. He said that basically there were 4 levels in my neck that each had something different wrong with it. All had degenerative disc disease, which is very common but also other issues. He recommend a 4 level fusion. C3-4, C4-5, C5-6 and C6-7. BUT he didn't use the old and most common way to do the fusion. Usually they either use cages filled with cadavor bones or a bone graft from your hip to replace the discs and then a plate and screws on the front of the vertebre.
    There was a new device by Medtronic that had just come out about 7 months prior. It is called the PEEK Prevail Disc. It replaces the disc itself and has the screws built into it so therefore it sits flush with the vertebre. He also used a BMP (bone morphogenic protein) that helps harden the fusion. There had been issues with other doctors using this on the cervical spine and it caused breathing and swallowing issues. So the FDA had only approved it for the lumbar region. But basically from what I could gather from my study of it, the problems could have stemmed from the doctors using too much and when it hardend it expanded and that is what caused the problem. (like I said that is just my opinion) But he said he would want to use it on my neck and had used it many times before and never had an issue. I had to sign a wavier so he could use it) I haven't had an issue stemming from that at all and I fused very well and quicker that I expected.
    It has now been 2 1/2 years since surgery and even though I still hurt everyday, it is nothing like the pain before surgery. I am still having some of the trap muscle pain though and I think I am going to talk to my pain managment doctor about botox injections maybe.
    My advice to you would be not to just take one doctors advice and opinion. Do A LOT of research yourself and get a second opinion at the very least. This is major surgery and depending on how many levels they fuse and the hardware they use, this will change how you live the rest of your life. I would definitely have my surgery again in the exact same way, with the exact same doctor. So just do you homework and ask a lot of questions to every doctor you see.
    Good Luck and keep us posted,
  • Sounds like you got to a good Dr. I have been dealing with similar issues and had one laminectomy 4 years ago that only slowed the progress of loss of function with my left arm. The OS I'm seeing wants to wait for now but says I need a 3 level fusion c4-7.
    Seems there are a lot of diagnostic tests out there that some surgeons don't use. Right now the only ones I've had this go around is EMG and MRI. prior to the lamenectomy a NS did a mylegram. Wonder why there isn't a standard protocol prior to putting knife to skin? I'll be asking that question when I see the OS next month.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014, pseudo arthrosis suspected 2017, diagnosed  2019.  Revision C6/C7 pending. Multiple ruptured discs lumbar, l2-s1.
  • From what you describe, it sounds like the same pain I can get from a seldom identified 3rd occipital nerve. I had a block done there and I could feel the nerve just like a taught wire from my neck to the top of my trap. I eventually had it ablated and that helped tremendously!.

  • Quick update - we're now 3 weeks past her surgery. We decided to go ahead and have the occipital nerves completely removed instead of just decompressed, as there was a good chance they'd have to go back in and do that anyway. The recovery has been painful, but the old pain is still gone, just the surgery pain that remains. It has taken a bit longer than she hoped to recover, but she seems to be making progress each week. She's had some swelling at the surgery site, nausea and hot flashes along with the pain. Going to get the stitches removed today.
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