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Failed ACDF x 3 and failed PCDF x 1, now what??

hitchedin76hhitchedin76 Posts: 5
edited 04/21/2014 - 9:09 AM in Neck Pain: Cervical
I have had three ACDF's that were all failures and now I'm afraid that my PCDF is also a failure. Following 13 +/- years of neck pain I was finally diagnosed with two herniated disks. I underwent my first surgery in December of 2010 and was elated that after a short recovery time, I felt great. Then just over a year later (Feb. 2012) I was rear ended as I was stopped in traffic by a driver going approx. 30 mph. Within two weeks of the crash, I began experiencing the same old symptoms. I made an appt. and saw my surgeon and a CT was ordered. When the results came back, it was clear that one of the two allografts had "cracked" all the way across and was impinging on neck tissue/nerves. Second surgery with an autograft went well for over a year. Again I was pretty much pain free. Then last March {2013) I began having the symptoms again. In case anyone wonders, you do get to where you just know when something is not right in there. I waited eight weeks before calling my Dr., thinking that I must have "done something". Finally, the symptoms were so bad that I had no choice but to go back to the surgeon. During that visit, I was told that autografts NEVER fail and was offered a CT where a dye is injected into the spinal fluid but by the end of the very brief visit, that had been taken off of the table and I instead was given a script for PT. I went home feeling a little down about the whole visit. PT had never helped it before so why would it be any different this time. After much thought, I called the Dr. and requested the CT. My request was met with some hesitation but again I was scheduled. I had the test on a Monday and on Wednesday I got a call from the nurse. She advised that the results were back and the Dr didn't like what he saw. I was asked to come in the NEXT day. When I got there, both the nursing staff as well as the Dr himself had a whole different attitude, almost sheepish. When he came in to the room, he apologized profusely and said that in his experience, the autograft had never failed and he assumed mine hadn't either. By the end of the visit, I was scheduled for my third ACDF. I didn't have it until October of 2013. When he got into the neck apparently it was a mess. In fact, in his words "all he could do was damage control", The graft had in fact "grown" but it had grown incorrectly and was smooshed out the sides of the vertebral disk space. Following that surgery, I was in a collar 24 hours a day, literally, for stability. In December, I had a PCDF, which was so much more painful than the ACDF. I was completely unprepared for the difference. So now it's just over four months post op and the pain is back with a vengeance. By the end of the day I'm wearing my collar and the pain level is between seven and ten with a lot of radiating pain and spasms. I'm taking large amounts of extra strength Tylenol during the day with a muscle relaxer for bedtime. If anyone has had a similar experience I would love to hear what you did. I keep hearing from friends and family that it's time for a second opinion. I like my surgeon but I'm really wondering!!!
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Comments

  • Was there bmp used in your cervical fusion by any chance? BMP is not supposed to be used in the cervical area because of too much bony overgrowth in an area that does not have the room for that .
    It might be worthwhile to see another surgeon for a consult, but just so you are aware, most surgeons don't want to deal with another surgeon's work, so you may find that you have to visit with several surgeons to find one willing.
    Do you live near a large city or teaching hospital? If you do, I would try there, since they tend to deal with the more complex cases and far more often than those in smaller cities and towns.

    Find a physician, Spine Center
    http://www.spine-health.com/doctor/find-a-physician
    http://www.spine-health.com/doctor/spine-center
  • I don't know what BMP is??
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  • LizLiz Posts: 9,447

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • After looking at the link you provided (thanks very much) I'm pretty sure that's exactly what was put in in October. The doc referred to it as a "cage". I hope this hasn't contributed to what I'm sure is another failure. I just know that I haven't had a single day since the Dec. 11th surgery without pain. I thought that once I was past the surgical pain, I would have at least a time of being pain free like I had with surgery one and 2. The 3rd surgery I was in a collar (one for daily/nightly use and another for bath/shower time so I have no way of knowing if I was ever pain free or even reduced. This is really starting to affect every aspect of my life!!
  • Has anyone else developed pretty significant headaches following surgery.  I'm over three years out from the last of my four surgeries and 
    while I've had headaches intermittently, I'm going on two weeks of nonstop headaches that start on the right side, at the base of the skull and radiate up the back of the head and settles right on the top just right of midline of the skull.  The area is probably about three inches in diameter and is always in the same place. Sometimes it feels like it's also directly behind my right eye. This particular headache situation started at the same time that I had increased right side neck pain as well as a sharp decrease in range of motion.  
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  • Thought I'd join in as I am in a similar situation as am 5 months post double ACDF C5/C6 and C6/C7.I do not know the cause of my herniated disks but did have a C4 distectomy 16 years ago.My surgeon says its just bad luck.I have been struggling with pain post surgery mainly burning pain down the back of my neck and left shoulder pain down the thoracic musle.I am also experiencing severe headaches and insomnia.My surgeon keeps telling me this will come good with time and I have been hopeful until now but am now wondering if I need to accept I am chronic pain sufferer. I wish I had a solution to my fellow sufferers but it seems there is no magic formula.I did have trigger point injections 2 weeks ago and have had a couple of days where i felt 'OK' so hopefully that's a sign that things can get better .I have scheduled more injections for 30 May as really don't want to give up .Its very difficult to maintain a positive attitude .I find now that people are not sympathetic as I don't have an arm or limb hanging off and look ok .I am going to physio  but find that doesn't help at all and the neck excercises just hurt me.It really is life changing .I am sorry I cannot offer any solution but hope everyone get some relief soon. 
  • I am with Marie on this situation.  I have the worst headaches post-op.  I also had bad headaches pre-op.  I had a two month window where everything was feeling good but at the three month mark it all started coming back.  I also had C5-C7 fusion done.  People initially care about your situation but if you continue complaining to them they just harden to it.  It is natural I suppose. 

    Hitch, my advise to you if you have not already, is to find a good PM doctor.  Sounds like you are just like the rest of us, a chronic pain patient.  Sorry, wish I had better new.  I am having a hard time but am adjusting to this a best I can. 

  • mlsmmls MarylandPosts: 11
    My post op headaches seemed to be referred pain from my neck. I didn't have headaches before my c5-7 fusion surgery in 2005, but after the surgery, the myofascial pain that I developed (likely largely due to the trauma of the surgery) caused terrible neck pain that spread down my upper back (trapezius) and up to my head as both burning and pressure pain. Felt like my head was dipped in hot wax and a vise was squeezing the sides of my head.

    Then when I got rear-ended 3.5 years later, the pain got more intense in my head, but sort of more on the top of my head. Felt like my brains were going to explode out the top of my skull. 

    I still have daily pain but it is FAR FAR less than it was. I no longer want to be dead. Myofascial release therapy (by those trained by John Barnes) and reading books by Barnes, Peter Levine, John Sarno, and Steven Ozanich were instrumental in my recovery. I no longer use medication, although I have modified my life as I'm still working on healing.

    When I realized that sometimes I felt ok, like after a trigger point injection, then I figured it couldn't be a true structural problem. My muscles and surrounding tissue (fascia) were the culprits, and they can heal. (But they can also be very stubborn.)

    It hasn't been a simple one pill or one shot or one day (or even a few weeks) of a certain treatment, but over time I have made remarkable progress after being in pain for years. (Details of my story and all the things I've tried--things that worked and things that didnt--and what I've learned while on this journey are on my website that I created in hopes of helping others suffering like I was--see the URL in my signature line.)

    Best of luck and never give up!
    HealingFromChronicPain
    (if you want to read about my story and what I've done to reduce my chronic pain, see my personal website: http://www.healingfromchronicpain.com)
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