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chronic headaches after failed cervical fusion
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lizard_lady_nm posted:
Hi, my name is Natalie. I had an anterior cervical discectomy and fusion C5-7 using the ROI-C cervical cage and artificial bone-seeded sealer of some sort in 2011. I used a bone-growth stimulator post-surgically for about 3 months. At first I thought my recovery was going well but then the back and neck spasms returned, and these blinding headaches started with shooting pain in my skull and eyes. I was trying to return to work but after about 6 months of progressively worsening condition and short term disability exhaustion I had to leave on medical disability, which kills me - I hate not working. Anyway, sorry for rambling, I've never done this before... I'm still at home 2.5 years later with chronic headaches. My fusion failed - I quit smoking about 2 years before the surgery, so maybe that history contributed to the failure - I'm now 46. Most of my pain feels like it's in the bones of my skull and face and in my eyes. I get these lightening bolts of pain and intense surges of pain into my temples, eyes, right side of my skull, and sometimes this one spot on the crown of my head and/or behind my ears. My cheekbones, eye sockets, eyes and brows get this deep persistent ache. I also get pain in the back of my skull (deep ache), neck and down my spine to my shoulder blades (burn). I'm on gabapentin (600 mg 3x/day), tizanadine (8 mg 3x/day - a LIFE saver for me), amitriptyline (20 mg 3x/day) and now hydromorphone (2mg per dose, up to 4 doses/day). Trigger point injections almost always cause me to flare up rather than reduce the pain. I've had cervical nerve ablation, occipital nerve blocks, facet and epidural injections, acupuncture, myotherapy, PT, deep relaxation training, and nothing has helped much. My brain MRI is normal. The cervical spine MRI (Dec. 2012) is pretty normal just noting reversal of normal lordosis and some minor osteophytes, the last X-Ray I had in Sept. 2013 notes the reversal as well and 2mm of anterior subluxation of C2 on C3 and of C4 on C5; a mild narrowing of C3-4 and C4-5 interspace, and small anterior and posterior osteophytes in the endplates at those levels. My surgeon believes that micromotion in the fusion space is causing the headaches and that to fix the fusion we'd have to go through my back and the likelihood that it would improve my pain is 50%; having no impact or making it worse also 50%. I don't think another fusion surgery through the back is a good idea.

My medications usually work pretty well, i.e. I get 2-4 flare ups during the day, but with medication can limit the pain to maybe 4 hours, on a good day, on a bad day it's more like 10-12 hours of not excruciating, but pretty awful, pain, and that's when I'm not moving around a lot at home. But when I go out, the bouncing down the road in the car, walking, turning my head a lot, etc. starts the flares of pain, which then linger so I sometimes have to abort my errands, come home and medicate.


I found a web site that offers "hardware injections" - diagnostic blocks into the failed fusion site. Has anyone heard of that? Is it widely practiced? I'm hoping to locate the origin of the pain so maybe I could get an implant (electrical stimulation or morphine pump?) and go back to work. Does anyone know of any other treatments I might try?

Thank you for reading all of this. Any suggestions you might have are greatly appreciated.
Reply
 
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ctbeth responded:
Hi Lizard Lady,

Although I wish that I didn't have to address you in such an unfortunate way as Lizard, haha.

Wow! I am so glad that you wrote and that I have the opportunity to address your concerns.

First, it would be easiest if you click on my name or little picture and read, "My Story". You also can write your story; bit saves lots of time and effort when you can refer to these stories rather than having to repeat and type the same stuff over and over.

As you see, my c-spine fusion is C4-7. The pain that you describe is almost exactly the pain I knew.

May I ask just one thing before proceeding? Has your fusion technically failed, as in the bone growth failed to fill in the immobilized levels, or has it failed to provide pain management?

These are two different matters. If the bone growth has failed, then you may wish to first consult with the surgeon who did the surgery. No one wants to go through THAT surgery again, but if your C spine is unstable, the results can be far worse than what you're raving right now.

If the failure is that it has failed to reduce your pain and discomfort, then you're, actually, in better condition to get help/ better relief.

If you're not being seen by a full- range of service pain management MD, this is where you should next seek help.

There are many treatment options for the symptoms that you're describing.

I have had spinal cord stimulation for over five years, and it has helped me more than I can tell.

A good MD will be able to isolate just where your pain is originating and then discuss treatment options.

Again, at the end of My Story, I have my email address.

If you'd like to further discuss this with me, I'd be most obliged.

Do, however, let me know here if you'll be sending me email. Many time, my probably settings will automatically place unknown email in my"junk" file. If I'm expecting email from you, I'll be sure to check that file.

Believe me: I'm all-too familiar with the sensations of which you speak.

There is help available,

Beth
 
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lizard_lady_nm replied to ctbeth's response:
Hello ctbeth thank you so much for your reply. My fusion has technically failed, there is movement inside the fusion zone. I have been seeing a pain management specialist of one form or another for about a year and a half. I have a physiatrist who does my meds and trigger point injections and an anesthesiologist who does the heavy duty spine injections, neural ablations, etc. He is the one who I would expect to help with a stimulator. It's good news to hear how much that device has helped you. I'll take the rest of our conversation off the board and email you directly now. Thanks again, Lizard
 
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mauimatt responded:
Hello

Ii know exactly what your going through. I had a spinal fusion at c6-c7 and ADR at c6-c5 approx 3 months ago. My level of pain going in was considerable where my lifestyle changed, Post surgery there has been zero improvement in pain and actually I would say it's worse. I continue to do physio but without any benefit, The only thing that provides some relief is accupuncture. The pain is horrible and I can never sleep through the night. I'm now back on oxy codeine but that doesn't even give me a full sleep. I'm getting a cat scan next week to get a closer look at the fusion and ADR to see if anything has failed on a surgical basis. I am almost hoping there is a surgical failure so I know what's wrong otherwise I am at the beginning again on how to relieve my neck pain. I was told by 2 surgeons that my neck was unstable and that the pain I was experiencing was severe muscle tightening due to a unstable neck, This pain was to disappear after I had my surgery.

Still waiting

Any thoughts out there?
 
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annette030 responded:
Have you tried going to a headache specialist instead of a spinal specialist? Perhaps a headache specialist could help you get rid of or minimize the headaches.

Take care, Annette
 
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lizard_lady_nm replied to annette030's response:
Thanks Annette. I have now gotten better treatment for my headaches with a new pain management specialist and a neurologist. I have migraines as well as other severe headaches. I finally got approval from my insurance company to receive botox injections, which have really helped. The pain level is down as well as the frequency. There's more work to do but it's progress.
 
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annette030 replied to lizard_lady_nm's response:
Best of luck to you. Not all pain management docs are also headache specialists, ditto with neurologists. I am glad you found docs that work for you.

Take care, Annette
 
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bionic_wife responded:
Hi, thanks for all the info I thought I was all alone going through this. My story started about 5 yrs ago I started seeing a chiropractor for pain in my upper back. The chiro went through the same thing each visit; roller table, tens stimulation, and then he started popping. He always popped my neck even though the pain was in my shoulder area. He was extra aggressive on my last business and I had to ice for days. I never went back to him. It was around that time when the pain in my neck became at first just noticeable, then unbearable. I started seeing a Neurologist after consulting my primary. At that time I had a herniated disk c6-c7 and minor herniation c5-c6, so off to pain management I go. continued PM for 1.5yrs until one night the pain was so bad I went to the ER. My suregery fiasco started after that. July 2012, anterior fusion c6-c7 with hardware and cadaver graft. July 2013 non-union of the graft, the revision surgery was an anterior fusion as well. followed up with long collar wear and a bone stimulator 4 hours a day.. May 2014 shipped out to an ortho surgeon for a consult. July 2014 posterior fusion revision using marrow transplant bone graft and heavy gauge wire stabilizer. I'm still experiencing extreme pain now going into my 9th week post surgery. I'm constantly collared (firm soft collar) bone stim 1/2 hour a day for NINE months. Slated to go back to work in October but I'm scared that it's not going to happen. I try to go most days w/o pain meds but if I get up and move around or drive my car the jostling causes ridiculous pain and I have to medicate. I can't be medicated on my job as I am a police dispatcher and 911 operator. Medication could cause an error that could cause officers or the public to be in increased danger. I honestly don't know where to go from here. I'm only 15 yrs into my career and I'm not eligible for retirement for 12 more yrs. I'm right there with Lizard, any help or suggestions would be appreciated.


Thanks
Tina
 
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lizard_lady_nm replied to bionic_wife's response:
Hi Tina, I'm so sorry to hear about all you've been through. I'm also sorry that I don't really have any good suggestions. It's nice to connect with others on sites like this but I find there's very little in the way of suggestions - just sharing stories - especially for folks like you and me who have complicated histories and have already tried almost everything. I understand that the posterior surgery is much more involved and takes a lot longer to recover, and of course neither one of us really did recovered from the anterior surgery in the first place. My doctors are skeptical that a posterior surgery would really improve my condition and might make it worse, 50% chance it would be worse for me they say. I guess the only suggestion I would have is that if you haven't already applied for Social Security Disability Insurance (SSDI), I'd do that right away. It takes a really long time for the process to run its course; I applied almost 2 years ago and am now just getting to my hearing - for a very large percentage of cases, unless you're a double amputee or something, SSDI will deny your claim twice and then if you're still hanging on, they schedule a hearing with a judge. If SSDI approves benefits, it's a this stage where that is most likely to occur.

I was 16 years into my career and I don't expect to ever go back. It takes a while to adjust mentally, but if that's the case for you, I'm sure you'll find some little thing(s) you can do to make you feel like your making a contribution to society - that seems to be important for you as it is for me. Good luck. I wish you a speedy recovery or at the very least some significant amount of pain reduction take care.


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