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Suspected cervical facet joint instability, help!

SandraRSSandraR NetherlandsPosts: 8
edited 08/05/2016 - 4:53 AM in Neck Pain: Cervical
I live in the Netherlands and 10 years ago suffered neck trauma.

In the Netherlands cervical instability (and whiplash associated disorder) is not recognized. Therefore I have been searching for help and treatment since my traumatic accident. 

My symptoms include:

Pain in my extremities, starting with tingeling and numbness in my extremities that moves to my core and then results in pain. This was accompanied by lower back pain immediately. Pain on the right is worse than left. Some other symptoms include balance issues, fine motor issues, bladder and intestinal dysfunction (dysfunctional voiding), heart palpitations....these symptoms have progressed over time and resulted in a lack of meaningful recovery from the accident 10 years ago.

MRIs and X-rays have only been able to diagnose lower cervical bulging discs and degeneration of C4/C5/C6.  

After having read several articles and information on cervical instability I strongly believe that this is the source of my symptoms and issues. 

Unfortunately because cervical instability is not diagnosed, let alone treated, in the Netherlands I am looking for help and resources and assistance in my recovery.

I am specifically interested in what diagnostic techniques and treatments [edit] members have found useful.

Many thanks in advance for any information and help provided!   
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1

Comments

  • LizLiz Posts: 9,648
    edited 08/05/2016 - 4:55 AM
    Hello SandraR
    Please click on the link for useful information
    Welcome to Spine-Health

    Please note that no member is permitted to give recommendations of doctors or medical facilities either on the forum or by private messages.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • nutcase007nnutcase007 United StatesPosts: 862

    SandraR - Your story is very familiar.  I was in a rear end accident 38 years ago.  Shortly after the accident, I heard a "clicking noise in my neck.  It took 36 years to get diagnosed, only after my neurosurgeon ran a bone scan of my neck and he found a broken facet joint.  After 36 years of movement in my neck, my C3/C4 level developed massive bone spurs which are also known to NOT show up on MRIs and/or x-rays.  I my case, the broken facet left massive inflammation and the bone scan diagnosed my problem.  My neurosurgeon said that very seldom will "spine experts" use bone scans, but only bone scans will diagnose a broken facet joint.

    Maybe you don't have a broken facet joint, but I think it would be worth requesting.  Broken cervical facet joints are usually caused by whiplash.         

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  • SandraRSSandraR NetherlandsPosts: 8


    SandraR - Your story is very familiar.  I was in a rear end accident 38 years ago.  Shortly after the accident, I heard a "clicking noise in my neck.  It took 36 years to get diagnosed, only after my neurosurgeon ran a bone scan of my neck and he found a broken facet joint.  After 36 years of movement in my neck, my C3/C4 level developed massive bone spurs which are also known to NOT show up on MRIs and/or x-rays.  I my case, the broken facet left massive inflammation and the bone scan diagnosed my problem.  My neurosurgeon said that very seldom will "spine experts" use bone scans, but only bone scans will diagnose a broken facet joint.

    Maybe you don't have a broken facet joint, but I think it would be worth requesting.  Broken cervical facet joints are usually caused by whiplash.         


    Thank you so much for sharing your case with me, it means so much to me. I was wondering if you could share some more about your story, for example some of your symptoms, what type of specialist you have seen and what workup they had done to try to diagnose you and what caused the breakthrough which lead to a bone scan?
  • nutcase007nnutcase007 United StatesPosts: 862

    SandraR - You ask what was the breakthrough lead to me getting a bone scan?  My physical condition was continuing to deteriorate.  What started out as shocking down the ridge of my right clavicle became numbness down my right arm/hand, numbness down my right leg and at times "quadriplegic hours"  where I would lose feeling in both arms and both legs.  My pain management doctor at the time was certain that I was having some form of structural failure in my spine.  He mandated that I see a neurosurgeon (my current neurosurgeon) who has a sub-speciality in neurosurgery of complex spine conditions and head trauma.      

    On my first office, this neurosurgeon came into the exam room and requested me to tell him why I was there.  He was listening (very important) to get history and my thoughts as to what was going on in my neck.  Next he performed a physical exam and told me that my physical exam lined up with my story.  Then he looked at the MRI that was already shot and he ordered the bone scan at that point.  When I went back to discuss the results of the bone scan, he said that the broken facet joint "light up like a lightning bolt".  He showed me the bone scan and his description was right on.  He proceeded to tell me that MRIs are often not very helpful in whiplash cases, especially when there is a period of time (months or years) after the whiplash injury.     

    In whiplash cases (I have friends outside of this site) that have had severe whiplash injury with multiple surgeries.  You need to find a surgeon that has experience in complex spine issues and will listen to your story.  My neurosurgeon tells me that he is one of few neurosurgeons in the U.S. that use bone scans for spine diagnostics, but that he has found the bone scans to be very valuable, especially in facet joint issues. 

    I hope this helps and please continue to ask me more questions if I have not answered your questions.

      

  • SandraRSSandraR NetherlandsPosts: 8
    nutcase007 Yes, your sharing information about your case does help me a lot, thank you so much, and yes I do have a lot of questions but I wil try to put them in bite-size pieces.

    My numbness and tingeling began in the night -or  more specifically, when my big/ active muscles of my neck relaxed- when falling asleep,  the numbness started in my pinky and fingers, then went up my arms and later also in my legs starting in my toes. Right more than left. Did you also have symptoms during the night when 'relaxing' your  neck musculature, or did you have also symptoms when active? And where your symptoms intermittent? Did you also - like I do- have other symptoms like bladder/urination problems, or muscle loss, or headaches/ balance issues?

    Also I am curious, if you don' t mind me asking, have you currently fully recovered from all your symptoms?

    This makes me also curious about the treatment plan in your case; I am wondering if you had surgery, and what did they do, or if there were also less invasive options available, like for example Prolotherapy?

    Finally how did you find the doctor who helped you and listened to you?

    Thank you so much in advance, looking forward to hearing from you.
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  • SandraRSSandraR NetherlandsPosts: 8
    edited 08/24/2016 - 3:44 PM
    .
  • That is so interesting. Kind of aligns with my symptoms as well. 

    How can a facet joint account for lower extremities issues? What can be done if that is the issue?

    One thing that could be done is a Facet Joint injection. If the injection brings relief, that can be used as a diagnostic tool. 

    Keep us posted!
    Iskra
  • nutcase007nnutcase007 United StatesPosts: 862
    SandraR - Sorry that I missed your updated questions.  I'll try to answer your questions.  
    My numbness and shocking started in my right hard/arm/shoulder 19 years ago.  The whiplash accident that caused the problem was 38 years ago.  At first, the symptoms were symptoms intermittent.  Being at rest or active did not make much difference.  Over the years as the symptoms got worse, the pain became more consistent.  As the symptoms got worse, it included my right leg.  In hind sight, makes sense since I had a broken facet joint on the right side.  Yes, the last couple of years before surgery, I had bladder control problems, muscle loss and headaches.  My balance issue was related to my right knee being weak.
     
    Have I fully recovered from my C3/C4 fusion in March, 2014?  No.  The fusion procedure used a carbon fiber implant. I was fired 10 months ago because I missed too many days of work.  Here in the United States, that is legal.  The structural bone issues have "been fixed", but I'm still have soft tissue problems in my neck.  I've been through several specialists and none has really come up with an explanation.  The latest thinking is because I lived with the broken facet joint for 36 years.  I might not have anything close to a full recovery.        
     
    You asked about less invasive procedures.  It really depends on what is diagnosed, if anything is found.  I thought that artificial facet joints (if that is your problem) have been approved in Europe, I think at least in Germany.  I don't know the reciprocally, if any between Netherlands and Germany.  I have a friend that went to Germany for artificial disc surgery before they were approved here in the United States.   

    How did I get the neurosurgeon I have?  My pain management doctor that I was working with for years demanded that I us him.  His comment was that he was one of very few neurosurgeons in the United States that had a good track record with complex spine issues.
      
              
  • SandraRSSandraR NetherlandsPosts: 8
    Nutcase007,  thank you so much for your response. It makes me sad to hear that you lost your job because of this ordeal and that you haven't made a full recovery. Due to my circumstances I haven't been able to work for a few years now. I can understand how frustrating this is.
    I am curious about a few thing you wrote: Did your symptoms change/evolve from the time of your accident, if so how did they change? You also mentioned you have soft tissue problems in your neck still, could you tell more about that? Could you tell me about the experience of your friend in Germany? Did your neurosurgeon publish any research on complex spine issues? Where your doctors able to explain or clarify the link between your neck injury and the bladder symptoms?
    I hope you don't mind me asking all these questions, but I find your experiences and information very helpful. And thank you so much for sharing.
  • nutcase007nnutcase007 United StatesPosts: 862

    I'll try to answer your questions:

    1) Question - Did your symptoms change/evolve from the time of your accident, if so how did they change?  Reply - Yes, they did change/evolve.  For 19 years, I didn't have much impairment, except for a weak neck.  The pain started with intermittent shocking down the ridge of my right shoulder blade.  Then it was shocking/numbness down my right arm and pinky finger/pinky side of my right ring finder. Next, it included swelling/pain on the right side of my neck.  The neck swelling in my neck got so bad that I would lose all felling in both my arms and legs before my C3/C4 fusion 30 months ago    

    2) Question - You also mentioned you have soft tissue problems in your neck still, could you tell more about that?  Reply - As mentioned above, swelling on the right side of my neck, swallowing issues and swelling up into my right ear.

    3) Question - Could you tell me about the experience of your friend in Germany?  Reply - Please read my private message. 

    4) Question - Did your neurosurgeon publish any research on complex spine issues? Where your doctors able to explain or clarify the link between your neck injury and the bladder symptoms?  Reply - My neurosurgeon left teaching in a medical school 20 years ago and so I can't find a recent papers.  You can find a lot of papers referenced in Q3.  The only answer the neurosurgeon would give me concerning bladder control issues was it was a result of spinal cord impingement. 
     

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