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Desperate question - to cut or not to cut? Nearly asymptomatic severe cord stenosis.

spineanxioussspineanxious Posts: 21
edited 06/22/2017 - 7:48 PM in Back Surgery and Neck Surgery
Nearly asymptomatic severe spinal cord compression at C6-7 here. I'm so torn on what to do! Looks like my choices have narrowed down to a single level fusion or... living with the condition until the symptoms become troublesome (or pending an accident, i guess :#)

Currently I can barely notice any symptoms.
  • I do have hyperreflexia, which I have been told may be the remainder from my last spinal cord compression issue.
  • In no pain whatsoever.
  • Experience muscle twitching that comes and goes all over my body.
  • Constant buzzing in my feet and random numb patches that come and go.
  • I have an occasional heavy feeling in forearms and legs that doesn't stick around for a while either.
  • At times feel a little tremor in hands, but that's fast passing. 
All of the above seem so minor when compared to my last experience (loss of dexterity and weakness that resolved after my first ACDF) or when put against the risk of the surgery and long term effects of yet another fusion. All surgeons I've consulted have a different take on the timeline. Some suggest immediate intervention while others think it makes sense to wait and see. 

Has anyone on this board experienced similar dilemma? Did you choose to go with a surgery or wait for your symptoms to develop? Were you happy with your choice? 
Please, any words of experience or opinion are welcome. 


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Comments

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Spinal cord compression is one of the hardest things to predict.  I know stories like yours where pain started after removing compression and others who lost function permanently from letting compression go to long.  All I can say spinal cord compression or injury can have effects that are very far reaching triggering other health issues.  

    I always say faced with a decision of this magnitude , a teaching hospital familiar with worst cases and outcomes is best .  You live with the outcome, no doctor does so this is always going to be a tough choice. Just know all the risks, put yourself in best doctors hands and educate yourself on issues, then whatever decision you make you can stand behind.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • memerainboltmemerainbolt IndianaPosts: 5,170
    spineanxious

    As Aaron said, this is a tough choice. And to me, with no pain, makes it even harder.
    Evidently you have talked this over with your doctors/surgeons but it seems you are getting different answers.
    I agree with Aaron, he said it best, educate yourself, find the best doctors and you make the decision.
    Good luck and please keep us posted.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • spineanxioussspineanxious Posts: 21
    edited 06/23/2017 - 12:23 PM
    Dear Aaron and Sandra, 
    Thank you so very much for taking time to reply.

    You are so right, there really is no way to predict anything and it's a decision one makes that they can get behind and feel good about. 

    @Aaron, I've seen three doctors different teaching institutions and they are the ones who offer a more aggressive advise (e.g. surgery and soon). The other two (from non-teaching hospitals) seem to lean more towards a conservative wait-and-see approach. 

    I feel that i'm fairly well educated on the subject at this point, but it's the risk assessment i'm having difficulty with. Unfortunately no doctor can tell me with any degree of certainty about the likelihood of progression in symptoms or hypothetical accidents impact...However, they are much clearer on the ASD predictions (with another fused level, making it 3 - very likely). That is my most pressing argument against going into surgery. But then again, what's another herniated disk as opposed to loss of mobility? 

    @Sandra, yes the lack of pain should be a blessing but in this case very counterproductive. Last time I had no pain at all as well. It was my function that started to go. This time, even less so. 

    I'm feeling a bit pressed for time with the whole "July curse" medical residents rotation and summer being a convenient time to recuperate. I'm currently scheduled to go under the knife next week (!) and feel like a deer in headlights. 

    I welcome additional comments and thoughts. 


  • I would consider that the longer you have symptoms, the less likely they are to improve once repaired.  You may not mind the minor issues now, but you may be kicking yourself later when they step up a notch and then they're permanent.  I certainly wish I didn't have hyperreflexia (mine is pretty extreme when I'm unmedicated, and I'm quite uncomfortable then too) and that surgery was an option for me earlier.


    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • I am curious re: what you decided to do since I am in similar situation. Since you mentioned your surgery was to take place in a week, and you've not posted since, I suspect you are indeed post-op now. I too am nearly asymptomatic, making the necessity of surgery (not to mention the risks of secondary issues) a really difficult thing to weigh or accept.

    I have cord compression throughout my cervical spine but it is severe at c5-c6. I have severe congenital stenosis that was worsened at that level with retrolisthesis of c5...its totally of out alignment, and appears headed out back of my neck! For 8 to 10 weeks I had numbness, parasthesias and pain to r arm, and r scapular area. I had PT twice weekly for 6 wks and those symptoms resolved completely. (My orthopedist thought perhaps the herniated disc getting reabsorbed was reason for relief). I have r arm weakness that will be permanent if surgery not done, but doesn't restrict me much. Slight balance issues, feet want to go sideways at times. Thats it. I am very active, chase grandkids, workout and spend weekends at beach. After finding out the perilious condition my cspine in I am a less aggressive driver, but decided that not doing my usual things based on fear of accident is excessive compared to risk.

    At symptom onset I had an inital mri, ct and flex/ext films. The recommendation then was for c5-c6 acdf followed 12-24 mos later by posterior c2-c7 fusion. On repeat mri+final neurosurgical consult he is recommending a c456 acdf, as 3 level fusion is needed to get the c5 retrolisthesis back in alignment. He then wants to follow with a posterior fusion at same locations 3-6 mos later because I have severe asthma and periodically need steroids, so I am at real risk of non-fusion. After the first 2 surgeries he will re-eval the others levels of cord compression and if still present he wants to fuse c2-t2 posteriorly. This is a local or suburban NS, but is very highly recommended by all the periop nurses I encountered getting a mri under sedation (claustrophobic), and by my orthopedist...she said he+his partner are the only 2 local NS she'd have work on her own cspine. Nonetheless, I am going to very highly ranked-nationally university neurosurgical clinic for 2nd opinion, since I am at high risk for non-fusion, and have fairly radical surgeries proposed for severe cervical spine issues.

    I work in healthcare, so  am particularly aware of some of the risks or common complications. I am, like you, debating the risks of allowing cord compression with mild-mod effects to continue while I have good quality of life, vs having surgery to stabilize cspine and relieve compression...only to have pain and lose that quality of life for a long while or forever.

    My orthopedist did say she would, if she had neurosurgery at teaching university, ask that an attending vs resident either perform surg or be in the OR at all times. 

    If you are feeling up to it several weeks out,  post what you had done finally, and how you are doing.

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  • Hi, I can totally relate to this.  I'm in no pain but have numbness and tingling in my arms and feet at times, and buzzing feeling throughout my whole body.  I've been diagnosed with severe stenosis and have some spinal cord bruising at c1.  It's been recommended that I get c1 -7 fusion.  I'm not looking forward to the pain and recovery from that, as it seems much worse than I what I'm currently feeling.  But at the same time, I do not want my symptoms to progressively get worse and lose function/mobility and cause further spinal cord damage.  Fortunately I'm in the early stages so hopefully that means the prognosis will be good following surgery. 

    Please write back soon and let us know how you're doing, spineanxious. 

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