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need stories of others with cervical pseudoarthrosis and had posterior fusion

Would love to hear your stories of what lead you to that diagnosis, what you did along the way before having posterior fusion done, what your recovery was like, and what are you like now.

Julie

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1

Comments

  • joowee40joowee40 Mississippi Posts: 299

    well then I guess no one has this

  • Give it a little time Julie.  Most people don't check the forum everyday. Are you now considering posterior fusion?  I hope you are feeling better but I fear not.

    dmo

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  • memerainboltmemerainbolt IndianaPosts: 6,399

    Julie
    Were you diagnosed with cervical pseudoarthrosis?

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • joowee40joowee40 Mississippi Posts: 299

    Sandra-yup..unfortunately and also cervical radiculopathy. Dr told me last Thursday. He feels that its my 6/7 that didn't do right and feels that the 5/6 is good and fused.

    Dale...certainly not something I am considering but eventually it is going to have to happen Dr said. I am going to avoid it like the plague and will probably just say I will live with the pain forever rather than to go through with that hideousness and it not have helped.I am not going to rush believe me because I do not ever want to have this done..ever. Shoulder is feeling great and aches a bit here and there and I have almost full range of movement and the rest will come in time. Glad to have that group of pain gone and could see what was still hurting and from where. Before it was all over that whole right quadrant of my upper body so it was hard to tell what was shoulder or neck still. Now we know.  

    Doing myofacial release therapy and traction (this horrifies me because I have been told to never do this. My PT is horrified too and is only doing it gently manually and not putting me on the machine.) and a few other modalities (ultrasound, Estim (I get this all the time with shoulder PT now), etc) and passive and active mild stretching to see if that will help. It won't because I did this from June to Oct last year and I told him that but he said lets try now that your shoulder is fixed and it may allow everything to settle down and accept the myofacial treatment. They nor me hold out hope but I am trying anything and everything. Have to do this for 4 wks and follow up with Neuro first part of Dec. No clue what he will recommend after that. More wait and see and wait and see and wait and see just like other Dr group but at least these finally see the problem where the others didn't and said just deal with it.

    Life sucks!

     


  • Julie,

    What are your symptoms relative to your non-fusion?  Do you feel you can work full time and still deal with the pain?  Are you able to sleep at night?  Is your pm dr controlling your pain?  Are you ok with living this way the rest of your life? 

    I, as you know am no big fan of having another cervical surgery.  Unfortunately you may have no choice if the area in question is not stable.  Heaven help you if the hardware breaks due to movement.  As I still have pain post op, I would have the posterior fusion only for the reason you are considering it.  That is just my opinion.  What is your surgeon recommending?

    dmo

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  • memerainboltmemerainbolt IndianaPosts: 6,399

    Julie

    I am so sorry!! But I'm glad to know you are with a group of doctors that saw the problem. My least favorite words, just deal with it. I have heard that too many times.
    At least you are not giving up, I admire your spirit, keep trying.
    Good luck

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • joowee40joowee40 Mississippi Posts: 299

    It isn't non fusion...that is different. This is fused but it fused wrong and made a new joint and it has movement hence the term false joint. That is why no one ever saw it all this time because they saw fusion but until the CT, they could not see what was really going on. Surgeon wants to do all he can before surgery. I was literally pouring sweat when he started talking about posterior surgery and when he said we will do these other things first and I let out my breath, he chuckled and said you are safe for now and can stop sweating. I know I had to be pale as a ghost.

    Well you know most of my trials and tribulations but for others...still was hurting all the time in side and back of neck, neck pops loudly (to me it sounds like a shotgun in my head but to others they say it sounds like I am cracking my knuckles), head gets stuck after looking down for a while and I have to raise it up manually, feeling like I have a knife in my shoulder blade area all the time (this is the worse part of all of it) both hands still tingly and go to sleep, tip of index and ring finger on right hand completely numb.

    Working...well that is so much fun said no one ever with cervical pain. I do what I can and spend plenty of time in the floor with my tennis balls when I cannot hack it anymore and go home sometimes when its a bad day. I still have Norco pills from my shoulder surgery that I am piece milling out to myself and breaking them into 2 so that I have something for really bad days that Tylenol 3 doesn't touch. Still no pain mgt yet and this new surgeon didn't even ask if I needed anything but when I go back in Dec, I will be out of the Norco and I will ask for something at that point. I just don't want him to think I am a pill seeking person so I hesitate to ask for now.

    Sleep..it is interrupted every night. It has become my new norm and I don't even feel affected by it anymore unless I am up for hours and cannot get comfortable and have to take something.

    Am I ok with living my life like this? No but there may not be another choice. I have had 4 surgeries in 2 years and I am so sick of having to tell my work and family I have to have surgery again and go through all that recuperation. If nothing else works and I cannot hang anymore, I will accept that I need to do something but with my run of luck, it will be another worthless surgery.

    It just isn't fair. It isn't fair for any of us.

  • I am not sure I understand what "creating a new joint" means.  Non fusion is where you don't have a solid fused area and there is movement at the level operated on.  Where is this new joint at in relation to your surgical area?  Also what can your surgeon due to remove this new joint?  Injections or meds or whatever pm drs do will not remove this joint that I can see.  I am not being dense or contrary, just trying to understand.  I truly am sorry you have to go through this.  I never received good pain relief from my two level fusion.  The levels above the fused area are now not lined up like they should be.  I believe this is spondylolisthesis.  I am not willing to have another surgery to fix this unless my pain is beyond what I can treat or endure.  I also have a one level lumbar fusion in the works.

    Julie, I also think it would be wise to find a good pm dr.  You may have pain longer than you think.  Resolving your issues may take a while.  Also there is no need for you to be in pain until such time as you decide on a course of action.

    Sorry your surgery was not successful.  Let me know how you are doing and what you decide to do.

    dmo

  • Research, research, and more research your surgeons to find the best one you possibly can.  Don't settle, the surgeon makes as much difference as anything you can do for yourself.  Don't let any doctor tell you "I THINK this will work" or "Maybe this will work", ask questions until you are blue in the face. If any doctor is worth their salt they will welcome your questions and concerns as well as answer them until you are comfortable.  After all it is your body, your pain, and lastly your money you are paying him.   You should not have to continue this lifestyle. 

  • DMO - non-fusion just means the site did not fuse. The "false joint" is another way of saying "pseudoarthrosis" when cartilage forms (and keeps forming) causing severe pain that usually requires a revision surgery. Mine is scheduled June 4, 2019, after 23 months of agony where my first surgeon shrugged and said "hardware looks good to me" and DIDN'T LISTEN AT ALL to my message about continued and worsening pain. After 20 months finally found a surgeon who did a slice CT scan of my pelvis and saw the pseudoarthrosis ("ghost images") and knew exactly what to do. I hate the idea of going through this again - but I can't sit for more than 10 minutes, leg gives out and it will just get worse as more cartilage grows. He'll remove that, put donor bone in my SI joint followed by a BMP protein that stimulates bone growth. RJ


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