Neck and Shoulder pain after C5-6 fusion.

[Roonie5038]

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 massage therapy, it helps but only for a short period.Then I have to go back to the massage therapist again and again, my insurance will not pay for that. 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

[jesse949]

After reading your post and getting the phone call from my neurologist yesterday on his day off , I'm really depressed after hearing the results of my recent MRI.  5 yrs ago I underwent just about the same surgery as you.  Plate, 6 screws, donor bone to C3 through C6 as I remember.
I've had so many shots, trigger points shots you name it...face it the pain will never go away.  In this recent MRI, it shows I have the upper disc C5-C6 is pressing into my spinal cord and have severe swelling which on his advise he had me drive over to the pharmacy and buy steroids, surprisingly it took almost all my pain away by morning.   I also have two more budging discs above the disc pushing on my cord.   After all years o dealing with the first go around I am totally scared to death to have another surgery.
I'm so active and do many different art things, I fear never to be able to bend my neck again to enjoy them.  I really started getting bad about three months ago after having to sell and move a whole ranch with just myself and a friend to help me.....My arm and, fingers grew increasingly worse with numbness.  My walk is very off and I feel like I've had to many drinks.....Feet feel as though I'm walking on hot Coles and this heat doesn't go away during sleep ( what sleep  right )  more like rolling around all night like a chicken on a spit !   10 pillows later, I still can't find one that lets me sleep through the night.  So let me ask you this, is there ANY other way to beat not having to have more surgery ?  What about this new Laser surgery I've heard about recently ?   I won't get in to see this new Neurosurgeon until it gets approved by Tri-west Insurance to find out anything until then, so I'm trying to do as much home work as possible. Hope you can give me some advise.  Susan  

[Shadowlucky]

Hi lyd915, Unfortunately,surgeons don't tell you everything you need to know going into the surgery.  I was under the impression that this surgery would fix me right up and I would be back to work possibly even two weeks after surgery!  I had a cervical C5-C6 surgery fusion, and had a lot of bone spurs that they didn't see before the surgery on the MRI, so it took longer than they anticipated.  Since the surgery, I have tried to talk to my surgeon about the pain.  My husband sits beside me and they talk as if I am not in the room.  He tells him  I need to exercise, which I do.  I do everything he tells me to do, or at least everything he tells my husband I need to do.  I am the patient.  I am 54 years old.  I am a professional and I know my pain level. When I ask the surgeon why I am still in so much pain he just shrugs his shoulders and says he doesn't know.  He did x-rays and said the fusion is coming along and that time will tell.  He says it could take up to a year before we will know where I stand as far as how I am feeling, so it is a waiting game.  One thing I do know is that it has been four months and my best day now is not better than my worst day before the surgery.  I wish I had not had it done.  They told me that it would have been too dangerous to wait because if I had a fall or been in a car accident, the spinal cord could have been severed and I was taking a chance of not being able to have movement in my limbs, but if I had it to do all over again, I would have taken my chances because at least then, I could manage the pain.  Exercise helps my frame of mind but not the actual pain and pain meds that worked and took away the pain completely then, only dulls it now and it never goes away.  I will keep you all posted and let you know month by month how things are going and if it does get better.  As for now, still no stamina, no upper body strength, pain in my shoulders and sharp stinging pains in my neck.  But most of the nagging pain is under the front chest just under my collar bone.  It is excruciating at times and painful all the time.  My pincer grasp is gone in my right hand and my fingers tingle from my thumb to my middle finger.  Keep me posted on you all's experiences.  It's nice to know we can talk and not go it alone.  Too bad spine specialists don't understand what they do to their own patients, or at least won't acknowledge that the pain unbearable.  I just received my latest bill from the hospital, altogether thus far, this three hour and one overnight hospital stay has cost $180,000!  Yep, thank goodness we had insurance but it only paid 80%!

[Shadowlucky]

Hi beachdreamer51  I am glad to hear you were lucky to have a successful cervical fusion surgery.  Are you and have you been able to work since this was done?  

[Shadowlucky]

I am so sorry to hear that penelopj1.  How do you decide that you just have to stop doing what you were educated to do career-wise.  I am feeling the same way.  Afraid, angry, upset.  Like I am in somebody else's body and can't get out.  My husband counts on me to bring in the bacon and cover us insurance wise.  He works for himself now and has no insurance.  I told him 15 years ago, when he decided he didn't want to work underground mining construction anymore, that I would go back to school, we would move back to where he grew up, and raise our son here.  I did it all.  At age 40, I got my degree in teaching and have worked until now taking care of everyone else.I am now 54.    Four months ago, I had C5-C6 disectomy with fusion.  Cadaver bone with titanium plate.  The pain has been excruciating.  Caused from degenerative disk disease.  Since the surgery was March 20, I took two months off for medical leave and have had the rest of the summer to recooperate.  I am now in Physical Therapy because I talked to the surgeon and he says my fusion is looking good, although I keep telling him the pain won't go away.  He shrugs his shoulders and says, lets try PT.  So here I am.  Two weeks into the PT feeling worse again, then when I started it.  I woke up yesterday looking like a bull frog on one side (the side they cut me opened anteriorly) so I told the therapist today.  The swelling had gone down but still swelled a little.  He didn't seem concerned.  Said it was probably the way I slept.  My problem:  I know it has only been four months since my surgery, but by best day now is still not better than my worst day before the surgery.  I teach 20 4-year olds in Pre-K for a public school.  I am licensed to teach PreK through 4th grade and really feel as though this is the time to teach an older grade but they tell me nothing is open and won't switch me with anyone.  I am feeling so alone, so afraid, an so angry.  I don't like not being able to do and be the person I was and I can't do a thing about it.  If I don't work as I always have, I am afraid that we will lose everything we have worked all our lives to accomplish. I asked my husband to try to go back to work doing underground mining construction so that his pay would take care of us along with him having insurance but he says he doesn't think he can do the work at his age.  He's 57.  I understand how he is feeling, but he doesn't seem to understand what I am going through.  He is more concerned about losing his sugar momma then being concerned about my health.  I don't know what to do.  My sister said, come live with her, but I do not wish to walk out on everything I have worked for all my life and I do love my husband.  But the fact is, I am in a lot of pain everytime I try to do a lot physically.  I am only 5 feet tall and weigh 105 lb.  I am not overweight and I have always been healthy and active.  I don't know what to do and I push myself daily to try to strengthen myself but I am just plain weak from my waist up and have now stamina.  I work a couple of hours and can't do anymore until I rest.  I feel tingling in my right hand and have no power at all in my right thumb to pick or lift anything with that thumb.  It's like I have no strength in my thumb at all.  Help!  What can I do!

[jesse949]

My neck was fused, plate and six screws.  My surgeon said my pain should go away in about a year !  Not happening! it was 2005 when I had my surgery. And I'm in constant pain.  I get horrible wasp type stinging pains in my shoulders.  I've bought several pillows trying to rid my self of pain to have a good nights sleep....nothing helps.
I've had tons of shots, 3 times to therapy and like Maureen, they only work for a short few days. When I went to my surgeon explaining my pain he took more x rays and shrugged and said, well maybe it's the bulge above that's causing the pain and suggested I have another  surgery which would leave my neck unmovable and ridged.
What I'm dealing with now, is loss of balance, double vision, dizziness,  numb hands and arms to my elbows, horrible weakness, NO strength, and hot burning feet, and fiber Myalgia and restless leg .......Not to mention the worst leg spasms a person could know.  Not just in one leg but normally both at the same time, to where you can't even stand up or walk them off.   Yesterday I had another MRI done.  We already know I have very bad Carpal Tunnel in both wrist, but he wants to see how much of this numbness is caused by my neck.. other thoughts could be MS.  I hope not. But something is defiantly not right with me.

[beachdreamer51]

Good Morning!
I had to have anterior fusion surgerines twice - the first time was for C 5-6, followed 18 months later by C3-4, 4-5, 5-6, and 6-7. (5-6 was redone)  The first was done about 7 years ago, with the second around 5 years ago.  I am a 61 year old female now, in good health (although I could certainly lose more than a few pounds!)
I decided to do a little research into possible outcomes/side effects of the surgeries because I have a nagging pain in my right shoulder, and every once in a while get a pretty bright shot of pain that seems to originate at the base of my skull and radiates straight down my back on the left.  After reading many comments at this thread, I have to say I feel blessed that I have had such a successful experience and outcome overall.  I used a neurosurgeon group in Seattle WA associated with Swedish Medical Center, and my care was top notch.  In both surgery cases, I was out of the hospital in about 24 hours and felt great.  I had very little need for pain meds, as the pain had been totally relieved by the surgeries - maybe a little post op pain at the surgical site.  I think as time has gone by, I have accumulated a few little side effects here and there as I mentioned above, but overall my experience was so positive, it was amazing.  My neurosurgeon walks on water in my opinion!  Now, if I could just find as good of prognosis for treatment of my lumbar spine, which is basically trashed - degenerative disc disease, too many years of misusing my low back, etc.  That would be great!  I refuse to get the shots - I think that is a band aid at best, and most certainly is non-curative.  My neurosurgeon said that I was not a surgical candidate and I believe her.  Maybe as science and technology continue to develop an answer will be found for those of us with lumbar spine troubles.  Best wishes to all...hope things can improve for each of you.