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Neck and Shoulder pain after C5-6 fusion.

A little over a year ago, I had C5-6 fused. With a plate and screws inserted. Since then I am having trouble with pain in the neck and shoulder area just below the fusion area. I wake in the morning with a headache then turns to pain in lower neck and shoulders.
I have talked to the neurosurgeon who did the surgery and he shrugged his shoulders and said I have no idea and sent me back to my neurologist. He gave me a series of injections in both shoulders and the pain stopped for a couple days but then came right back. Then we tried message therapy, it helps but only for a short period. And I have tried changing my pillows on my bed and sleeping in different positions and nothing seems to help for long term.
What can I do?
Thanks
Maureen
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Avatar universal
Hey randallvandall,  I have the same pain problem that you have.  I feel for you, believe me I know what pain you are talking about all the way around to your eyes.  My head has started popping and catching mildly, I don't have to move it with hands yet.  I have c3-c7 fused and L4-L5.  My surgeries started in 1992 with my last one in 2008.  I am a 59 yr. old male. I hope somehow you read this I would like to communicate with you.  You brought up God, Jesus Christ is the only way and reason I am still living.  

Mike Brown  
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Avatar universal
I had fusion of c5 c6 on Jan 29 2014 and also a ruptured spinal cord all at once in that spot. I was pain free for about a month or two. Then came the pain back loss of balance always falling and can't hold nothing in my hands I drop everything I have migraines every morning when I wake up I have numbness and tingling in my pinky and ring finger constant burning pins and needles sensations that go from my neck into my shoulder blades and I kept going back to my surgeon and all he could say is I don't know but ur fusion was successful so I went to two more different surgeons and all they can say is its in my head they are agreeing with the surgeon who did my surgery and it's really frustrating I live in constant pain and no doc will help me or give me anything for pain cause it's in my head as they all say Dartmouth did my surgery and. Not impressed any ideas from any of u
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Avatar universal
I ruptured the disc at C5-C6 and had a successful fusion in 2011. Six months later, I was rear ended in a car accident and had t have the adjacent segment fused (C6-C7). I felt  better for a short time after my second fusion but them went downhill. I went back to the surgeon and found out that both of my fusions had failed and I needed a corpectomy of C6 and fusion of C5-C7. I had the surgery in May of 2013 and again, I began feeling better and then it went downhill. This time, I could barely swallow or speak. Went back to the surgeon to find out that I had a hardware failure (4 screws and plate) and that the plate was kicked away from my spine over a centimeter. Went back in for surgery in November of 2013 for a hardware revision. Since then, I have been in horrible pain that begins at the base of my neck and radiates out and down my arms. I have chronic migraines now and don't have one minute where I am without pain. I have tried massage, acupuncture, epidurals, branch blocks, Botox, 100's of sessions of PT, and even nerve cauterization with no relief. I see a pain management doctor that loads me up on pain meds that I can't take because they make me feel sick. Four surgeries in two years and 15 surgical procedures and I am no better than when I started. I lost my job due to having to take a leave of absence and not knowing when I could return. My friends and family are so tired of me and this situation, and I don't blame them. I just had a CT scan with myelogram and hoping for some answers. I have lost three years of my life and feel hopeless that this is how it is going to be forever. Pursued getting a spinal cord stimulator but was told I wasn't a candidate due to the epicenter of my pain being at the base of my spine. Not sure where to go from here...
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Avatar universal
My Dr. Roger they said all lies like if I got stopped by police n they gave sobriety test ID fail the nurse said my BP was so high cause I was in pain, my GP said that was crazy. I should have gotten a lawyer but then they say you consented to the surgery! Sol!
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1 Comments
I had c3,c4,c5,c6,c7 actually 3 levels a plate and 8 screws. I live in North Carolina. I had my surgery 16 months ago, I had very little pain after the surgery and minimal since. I'm a Christian and my doctor was a Christian he prayed with me before surgery, I've seen him once after the surgery. I'm not 100% better but I would do it all over again.  
Avatar universal
I feel all your pain, I also had c-4-5-6-7 fused with no results to the pain numbness tingling. I cried reading all these post. My Dr. Told me see a pain management Dr n could care less he made his money.
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17398554 tn?1456331468
I have no clue I've had two ACDF C5-6 surgeries in the past two years. Live on pain meds for life I suppose :-(
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Avatar universal
Hello People: First i would like to say that i feel very sad to here about all the pain you good people are in and also i wish things had turned out better. It seems to me about 95% of these C/5, C/6 surgeries only cause more problems. I too am scheduled to have surgery on my C/5, C/6 in 2 weeks and after reading these posts i am ready to run out of state!!!!! weeks of PT and pain management has helped me some but i have the pain and numbness on my right right side on and off.  It is very bad on cold days. I really will have to put more thought into this surgery because i have already been out of work for four month's and some of you people never make it back!!! I am so confused right now? Any advice would be appreciated.
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Avatar universal
Wow I came here expecting answers and seems to be none. I like everyone else here had same cervical fusion surgery, had same reaction by the doctor that did it and 1 year later still having so much pain as described by all of you. I have a wife, 8 kids and that's the only thing holding me onto life cause at times I can't handle it. Meds work ok for about 1 hour and then it's just coping with the pain. I went to another doctor and I've had several procedures including burning the nerves on my neck and shoulders on each side and still no releif.  Last week this doctor referred my to another specialist in Emory Hospital as I believe he ran out of options.  On top of this message and my family are trying to survive the bills to run a home, doctor bills cause insurance *****, and because I've been denied disability twice now my wife works 2 jobs and we are still behind . Please if anyone has answers please, please help. I just feel at times I don't need to be here and maybe my family can use my insurance money to survive the financial situation I've put them in. I'm not suicidal nor depressed as it may sound , but if you are not going through this you won't understand.  I was anot active person who provided for my family and on daysome off I spend time with the family and always looked for a reason to update my home. I can't even play or pick up my kids like I used to and my 6 year old daughter ask if I will ever get better and better able to pick her up like I used to. With this said anyone reading this and I'd thinking of doing this type of surgery just forget it and try other options if you can. I poor my life out there to see if anyone has answers.  
Rafael Rodriguez
***@****
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1 Comments
Sorry for the typo as I'm using a phone and it just types what ever it wants to and there's no edit on this site. Ok so where it says message it's mess me and my family.  Then it bleaped  insurance s. U c. K  s. Then instead of it was anot is I was always an active person who provided for my family and on days off I looked for a reason to update my home.
Avatar universal
Over 20 years of cervical issues.  Fell in the military, left untreated for six years.  When fusion surgery done, had a 90% compression of cord.  Post surgery was like a switch flipping... no pain, headaches, arm tingling, dizziness, shortness of breath, blurry vision, etc... etc... as I suffered many others.  About 8 years passed and I started to feel the same as I did in 1992.  Went to Neuro, conservative treatment... (believe this is the wrong course of treatment in most cases once a herniation is found).  Waited 2 years for 2nd fusion C5/6 after dealing with increasing issues and loss of feeling in my right thumb and right arm/hand swelling.  Post surgery, NO CHANGE or relief.  Filed for SS, fought with Neuro for corrective action, told to "learn to deal with it", eyesight changes due to age, pain meds don't work, etc..  Gave up in 2010 after denial and retreated to conservative treatment, PT, Isometrics, self limited my activities.  Needless to say, now 5 years later everything is worse.  Grinding, headaches, numbness, memory, thoughts, etc...  In May 2015 confirmed C5/6 Fusion failed, bone bank chip riding my spinal cord, artifacts all around area, ostephytes at nearly every level, clefts at several levels, though I am not a candidate for surgery.  Have been unemployed/self employed as I need to rest every few hours or so.  Any heavy exertion requires me to sleep.  If my neck pops, electrical shocks down my back and legs, toss and turn through the night due to neck pain, arms going "dead" etc...

Seeking legal representation, but most say I have no case, though I have metal hardware with only 3 screws confirmed failure this year, and now the office colleague of my past neurosurgeon telling me I am not a candidate for corrective surgery???  

Complication is my heart rate and pressure routinely spike, respiration rate is low to near 10 per minute waking me at night, headaches are non stop, ear aches daily, pain non relenting, and I feel as though I will not wake one day or move the wrong way and become paralyzed or dead.

Thus, if you have any grinding or popping at your fusion level, chances are it FAILED and you should not wait.  Go to another office and get a CAT w/myelograph or MRI.  If it failed, it needs to be taken care of and the lack of care by your previous Neuro can be addressed in court for malpractice.

From all my research and investigations, THEY are not monitored and use unnecessary X-rays to say everything is OK and secure.  Only the CAT or MRI will show the damage.  My past did a swimmer's X-ray at the last to tell me everything was fine and in place.  NO detail, or ability to see the fusion actually failed, but I now read X-rays and saw the "darkening" line where the fusion was failing.

Best to all, and do not "Learn to live with it" as you give away the life you could have had.  I did not play baseball or football with my kids after 2006.  Stopped going to amusement parks, don't lift my grand children up, all because of the pain and fear I have.  And I continue to give up more things I use to do because I can't or fear the possible outcome.
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Avatar universal
I have read almost every blog on this sight from 2013. What I am hearing is that neck fusion is not a viable solution to herniated disc for C5-C6 area. So my question then would be, should you just live with the pain in your neck, arm and hands with minimal opiates (tylenol only)? I've been to two neurosurgeons. They both consider fusion as the option for me (ruptured disc in C5-C6). In wreck in 2011. Now, its 2015 and getting burning pain in left arm and have had pain in my neck previously. Still have mobility in my neck. Is there anyone that has had a positive experience with neck fusion??? I'm seeing no benefits to this on this site.
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Avatar universal
Amen, I hear that!!!
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Avatar universal
You might want to see a neurologist to rule out some other problem. Don't want to scare you, but MS can do that. I have three people in my family, some related by marriage, who have it and it's different for all of them. Most people can get on meds and do okay, they can still get around and work, etc. Worst part is the fatigue in a lot of cases. Your neck can cause shoulder arm head and neck pain or tingling in arms. Legs, feet, vision sounds like something else.
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Avatar universal
You might want to see a neurologist to rule out some other problem. Don't want to scare you, but MS can do that. I have three people in my family, some related by marriage, who have it and it's different for all of them. Most people can get on meds and do okay, they can still get around and work, etc. Worst part is the fatigue in a lot of cases. Your neck can cause shoulder arm head and neck pain or tingling in arms. Legs, feet, vision sounds like something else.
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Avatar universal
I COULD HAVE WRITTEN ALL OF THESE, it's been 10yrs since what was supposed to be and actually says it is on post op MRI, l3-l5, when my latest report shows that only l4-l5 are fused, I WENT TO NANCY EPSTEIN IN LI NY, my first visit after surgery I walked out of her office and the manager took me in the back said they don't take my plan anymore, so bye, gave me no plan NOTHING, IT IS THE WORST MISTAKE YOU WILL MAKE I WAS PITCHED I WOULD HAVE TO ADJUST MY LIFE A LITTLE, now I have no life, just pain pills depression anxiety and a bad back Mack hips stomach eyes, THE SURGERY STOLE MY LIFE AT 35yrs OLD, DONT DO IT!
Anyone know of support groups, I cut everyone off because I don't want to bother friend & family, if you do it would be a life saver, thx
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14732384 tn?1436194415
Hi treva,I know this post is old but i as wondering about your outcome.I had c-5 c-6 done as well done 3/26/15 and i still hurt and burn in my upper back and arms and now up my neck,So im back on pain meds and doctor has given me a fibromyalgia diagnosis. Hope things work out well for you and this msg finds you pain free.
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Avatar universal
I had a fusion in 2012. I have severe pain in the back of my neck, a burning and tingling sensation up and down my left arm. The pain between my shoulders is unbearable. Not to mention the migraines and jaw pain too. I thought the grinding sound when moving my neck was my imagination until I read your post tonight. I take MS Contin and Lyrical for pain. It works for awhile then the cycle starts over again.
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Avatar universal
I'm so sorry for everyone in pain from all this bone bank replacements/fusions as I am a victim of the same thing, a donor vertebrae, in my neck plus two of my own fused together. My surgery was in 1991 and was told it would need replaced in 10 years, it is now 2015  I have had the severe pain down my shoulder and arm starting in 2014, now my neck has been giving me the "up all hours of the night" with horrible pain again like in 1991 before the surgery only now I hear a grinding sound when I turn my head at times. I'm concerned there may be more damage now then before, not sure what to do.
Mia
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Avatar universal
I don't get it. I have mentioned the vision problem that I have since the surgery too. I get that answer, also. "It has nothing to do with the surgery", yeh, right. I'm sure that it has everything to do with the surgery, since there was no blurry-changing eyesight before the surgery, but the're right and I'm not! It's slow going on improvements to cervical fusion. They are figuring out ways to use artificial discs on people who's fusions didn't take, but those of us who's fusion did fuse, we have to wait in our stiff unnatural positions, until the technology catches up. Try and exercise a lot and stay healthy so you'll still be around for the future help???
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Avatar universal
I have been having neck and shoulder pain for about 10 years and i'm no better. do you think you can help?
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I had surgery 9/25/2014 on c4,5,6 since my neck is always uncomfortable and I also experience the numbness down to my toes the doctor told me it has nothing to do with the surgery and my eyesight has been affected also I feel like i struggle to see frequently. Glad to hear Im not the only one!
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I live in Australia if had a fusion in lower back in 2000 the doctor said he was not operate on my neck untill I lost the use in my left arm the operation on my back worked but my neck is giving me a lot of pain now last week I got a cp scan the family doc said me neck is really bad not to have an op and if eny one say they can fix it run a mile as I hade a fusion on my lower back worked it like being between a rock and a hard place I don't no what to do I know the desicion is mine but it the hardest desicion I've ever made when the pain get to a level 12 out of 10 I want to operate when it esas I don't want to trevor
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Hi my name is Vicky,I had my surgery on 08/11/2014 for yhe c5 &6 i had alot before my surgery it was hard for me to look down,when I would pick my head up it would feel like a load and my eft arm would hurt so bad that I could not pick it up.
well after surgery I had a hard time swallowing but after a week I was fine.I did not have to use a neck brace. the nurse just told me to move my neck slowly to the left and to the right and pivk my arms up .so thats what I have ben doing but I still have pain on my left shoulder  going down a little to my arm and I cant sleep sometimes on my left side.I will be calling my doctor for this but in the mean time I feel ok but I am never going to go thur this again.I am taking tylenol extra stregth for now
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Avatar universal
Wondering how you are doing had tri level fusion in 2012 of May Ben a nightmare since
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Avatar universal
Yep the positive out look is good. I can't do many of the things that I used to do, ski, ride horses, a bike yes but really risky because of post fusion balance issues. My problem is that the three level fusion surgery was done on a part of my neck that didn't really need it, and would have been better served with a flexible artificial disc at the level below the fusion. However the fusion that was done is way too curved, and is a standard for that surgery. It is a 20 to 30 degree curve, or in my case an angle from the angle of the screws that are in my neck.. There is a 20 to 30 degree curve in a penny, but who would want their neck forced into such a tight curve? What I hope that people are warned about is accepting this generic standard for treating neck pain that is not helped with physical therapy or drug treatments. I don;t take ANY pain meds, because I can't stand living in some foggy altered state and with no real help for pain, because the cause of the pain is the permanence of the acute fusion. Does everyone have a size 7M foot? How would you like to wear the wrong size shoe for the rest of your life? That would eventually effect almost everything else about your health. from the pain, sleeplessness, worry and general taking away the pleasure of life from the effects of it. What the problem seems to be is that the treatment for compressed discs, neck pain and so forth is not further along in it's accuracy, experience, or outcome related information. More people have cancer and heart problems than neck problems, so I would assume that studying neck problems doesn't get as much funding or attention. What I said above still holds true, the surgeon did ruin my life, I could no longer work -the reason, mostly that I went for the surgery; was told- " I can fix that.", so that I could go back to work, lost my truck, my car, my income, my money my husband, the house that I lived in and in many cases my credibility, because I looked just fine, like a big, healthy bruiser in fact, so hardly anyone that saw me really believes that there is anything much wrong with me; I'm a whiner, a complainer and lazy. I say to myself-"You try living with 24 hr a day pain, 2 to 5 hours of sleep a night for five tears, living on a tiny income and losing every normal part of life that you had built over most of a life time." Even my siblings don't get it. I rarely talk about this to anyone, because who wants to hear it? I'm just hoping that anyone else that has neck pain, gets a second and third opinion, and goes to a surgeon in a populated area, so has lots of experience and doesn't just do a generic fusion on your neck! I can still walk almost anywhere, and have been a painting fool, so yes I have taken some of my life back and get pleasure from a few things. Chocolate.
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