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10 months post ACDF and still struggling + new symptoms

I’m 10 months out from a C6-C7 acdf, surgery went well and I did my time in the Collar. No meds other than Aleve and Tylenol. The pain between my shoulder blades never went away, I still have severe tightness and knots that make it hard to breathe, it’s a 5-6 at all times. About 9 days ago, my symptoms heavily ramped up and I’m back to managing the pain full time with heat/ice/stretch/taking it easy. To add concern, I have a throbbing in my right shoulder and jolts/shooting nerve pains and numbness all the way down to my fingertips- surgery was performed for symptoms only appearing on my left side so this is new. Could is be a 2 steps forward 1 step back and my nerves are finally regenerating? I contacted my neurosurgeons NP and got my fifth steroid pack and a referral to pain management- I’m miserable and my quality of life has dropped significantly in the past 3 years of this battle. I’m tired, has anyone else been here? What would you do next? I’ll try anything!

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Comments

  • memerainboltmemerainbolt IndianaPosts: 4,123

    Hello dreadhead86!

    While you are waiting for other members to reply, please read the articles below on what pain management can offer. I have been in pain management for years and we have used many different procedures to help with the pain.
    I can also understand about your quality of life. Mine has dropped drastically, going from a very active life style to almost a dead stop. I cannot sit or walk for very long, lay down more than I want to, so you are not alone there.

    Like I said, there are a lot of options out there, you just have to try. Don't give up and try to keep a positive attitude.
     Pain Management Health Center

    Take care and keep us posted.



  • All I can say is that I am there with you and totally understand the frustration.  I am a 3-level ACDF post-surgery patient (C4/5 down to C6/7), 11-months past surgery.  I had  a relapse of cervical radiculopathy starting a few weeks back after water skiing.  I am currently on steroids, which have helped take the edge off but haven't been miracle drugs.  My 12-month post op is in 2.5 weeks...hoping to get answers and hoping those answers do not involve surgery again.  I am trying hard to stay positive and not get down about it and not try to jump through the "what if" scenarios.  Worrying about tomorrow does no good.  Have they done any recent imaging studies to rule out things like adjacent segment or non fusion?  The pain does wear you out and makes it hard to deal with normal ups and downs of life in general.  Definitely try the pain management.  Maybe he/she has some tricks up their sleeve.  What about epidural injection? Was there anything that helped you prior to surgery that you can try?  Perhaps a medication like gabapenton or muscle relaxers?  I asked for a script for meloxicam, which is an NSAID because that gave me some relief prior to surgery.  Good luck and keep us posted.  And, do not give up hope.


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  • Do you have imaging that shows complete fusion?  Have heard that fusion can still occur 1 -2 years after surgery and some surgeons won’t do imaging other than X-ray until after then.  I had C4-C7 almost 6 years ago. A year and a half ago I had a CT scan that showed the cadaver bone that was used at C6C7 was gone and a shadow was interpreted as partial fusion. The surgeon said he thought my continued symptoms were from carpel tunnel, which I did have but 6 months after carpel tunnel surgery the symptoms were actually worse. So a new CT scan, with out a shadow, and no fusion what so ever at C6 C7. As I understand the only way to have positive confirmation of fusion bone growth is with  CT scan. Also understand that C6/C7 is the most difficult to fuse as it has the most movement.  Hopefully you will get some relief from pain management and that it’s just nerves regenerating. 

  • Hi, I'm 3yrs post op. ACDF C5-7 and recently started feeling grinding and crunching which sometimes is painful.  I am now feeling  more pain and tightness in neck and cannot look up or reach upward without causing more pain and generating a headache.  

    Trying to get in to see new doc as my surgeon left area and unfortunately work comp issue. Finding new doc a bit difficult. 

    Has anyone experienced similar?

  • Hello wornoutinCA.  I did have more pain and tightness in back and neck.  I went back to doc last week (actually, went to urgent care clinic at first of week and then Primary Care at end of week).  Apparently, I started having muscle spasms with my back/shoulder being rock hard.  The PCP prescribed a muscle relaxer, which helped that generalized back pain.  Now, I just have the underlying arm/shoulder pain.  It is much more specific and is what I started with about 4 weeks ago.  And, as for the headaches, I have had more of them.  But, I explained to someone else that my migraine doc calls the "migraine brain" a "sensitive brain".  So, when things are amiss in the body (like having pain in your arm, neck or back), it can trigger headaches.  So, at least for me, I feel like the increased headaches are indirectly related to the arm/shoulder pain in that my body senses something is amiss, so my brain reacts with a headache.  I absolutely hate this waiting game while you are in pain, just trying to get from one day to the next.  I am worried, too, because I have noticed stupid things like dropping a glass, tripping on my own two feet, weakness in my left side (where the pain is).  Part of me worries that something serious is wrong, or maybe I am just making this all up in my head as a hypochondriac.  I kind of vacillate between the two extremes.  Maybe the pain and lack of sleep makes you crazy.  Then sometimes, like this weekend, I get mad and tell myself that my body is not going to betray me.  So, I push beyond.  I worked on my daughter's bike, changing the tires and chain.  It took me a lot longer than it should have and was extremely frustrating and my arm and shoulder just hurt.  But it was like, "To heck with you, body, I am going to do what I want to do and should be able to do."  When I was finished, I was worn out.  My left arm was trembling, and my pain was at a 6.  I sometimes feel like the mental side is going downhill as I wait out this time to see my surgeon.  And, the sad thing is that I will then have to wait out having any imaging studies (beyond the xrays).  Sorry to sound down.

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  • stiffneck7sstiffneck7 Posts: 109
    edited 08/27/2019 - 1:33 PM
    dreadhead86 - I've had and still have similar symptoms to what you describe in your post in this thread.  I'm also an ACDF veteran.
     In my situation, I followed the advice to see a pain management doctor after my ACDF and did the dance for years at PM.  Pain management doctors do many times have their place, but in my situation, I had a second cervical condition that could only be treated by a second ACDF that the surgeon of my first ACDF had missed.
     If I were in your shoes, I'd be seeking a second opinion from a neurosurgeon from a highly nationally rated hospital in complex spine conditions.  If you want more specifics, please private message me.

  • Hi Kand-sorry I'm just seeing your response. I'm so sorry u are going through so much. You are not crazy. The pain and not knowing and waiting takes a toll on us all. I fi ally had xrays today showing narrowing above and below fusion  will be waiting for mri now. Hang in there.

  • Hey wormoutinCA,

    Did you see new doc? What did he/she day?  Are symptoms worse, better, or same?

    My journey had been long. Had cT myelogram in Sept that showed mild disc protrusion above/below fusion, mild boney foraminal encroachment at left c7 nerve root, left c7 screw coming loose, and tiny area of possible fusion at c6/7 but remaining disc space unfused.  Doc said I could still fuse in yr2 and said I stretched a nerve and prescribed PT.  At end of Oct, had 2 types of nerve testing.  It identified mild ulnar nerve problems and chronic left c7 nerve damage.  Neurologist prescribed elbow brace for 6 weeks, which made pain worse.  Went back to sine doc who refused to do anything until ulnar nerve was fixed.  Went to hand surgeon.  Steroid did nothing for elbow.  Went back again and new steroid shot helped where ulnar nerve goes through outer wrist.  So, scheduled surgery.

    2.5 weeks ago, fell onto top of my head from a free fall of 5'.  Technically, I was sitting on tall bed.  Lightening pain down spine. Went to ER and they did regular ct.  They noted existing left srm weakness and new left leg weakness.  Ct summary was 1 sentence long and said hardware intact and no osseous abnormalities identified.  The report in Sept was 2 pages long and detailed with findings.  A week later, I slippes and fell on rear.  Since1st fall, pain was at 6 to 7 from meck throughout entire back. Then I developed sciatica.  Neck burned, thoracic carried a hatchet, and lower back had radiating pain.  I moved my followup apt up by 2 weeks.  Saw spine surgeon last week who told me a fall put of a bed is not a significant fall and said I did not really hurt anything.  He prescribed heat/icr, tens, accupuncture, chiropractor. PT, and gabapentin. He examined my arm strength and reflexes, ignored my lower extremities, but chsstised me for falling again.  Said ulnar surgery was only thing that would fix me.

    Had ulnar surgery yesterday.



      

  • Still waiting for MRI then hopefully a new specialist.  So crazy what u are dealing with. I hope you have a speedy and successful recovery with this latest surgery.  Hang in there.

  • Sorry for so many misspelled words.  Wrist went as expected.  There was a lot wrong with elbow...doc told hubby it was the worst he had ever seen.It was so bad that steroids did not even have impact on it.  So, I am glad it is fixed and hopeful to see dramatic improvement in hand. Doc said I would be so happy with results that I will be scheduling right elbow soon.

    I saw a chiropractor after spine doc dismissed me last week.  Chiropractor ordered cervical mri which I am having today.  Depending on results, I may be getting a second opinion from a new spine doc (chiro suggested I get 2nd opinion, but I want to see what post surgical mri shows).  Chiro thinks I have an L5 pinched nerve from fall, but we will be addressing that later.  I do not expect docs to have all the answers, but I hate it when they do not listen to you.  It is nice to have someone validate you.  Good luck on your journey to healing and do not give up!

  • Kand so glad the ulnar surgery wen well. I would definitely get 2nd opinion on neck and see ortho about back. With the back a lot of times PT and PM can help if injury is not too bad. Make sure to ice a lot...ice saved prior to my low back surgery in '96. It took 3 years and 3 docs before I finally had doc due mylegram. MRI was not showing significant problem. Mylegram did and surgery was a success.  Hang in there. I gotta go for now. At hospital with my mom.

    Jenn

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