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Seeking friends with Congenital Cervical Stenosis

 Good morning and thank you for welcoming me to this group! My name is Bethany and this week I was diagnosed with congenital cervical spine stenosis from C3/C4 to C6/C7.   The MRI also notes degenerative disc disease and disc protrusion of 4 vertebrae indenting the ventral thecal sac and cord (cord in C5/6 only).   I am currently waiting on an appointment with the neurosurgeon and am quite anxious.

 The thing is, I am only 34 years old and I am very physically active. I have new onset of numbness in my left hand and forearm as well as down my face and had tremors for over 10 years.   I have also been progressively losing my once excellent vision (blurriness and intermittent exotropia) the last two months but I’m unsure if it is related to the stenosis.  Lastly, the daily head/neck aches are exhausting.

 I guess I am looking for anybody else who at a young age was diagnosed with this disease. Do you have any advice or suggestions for managing the discomfort and what, if any treatment did you find successful for your condition? 


Thank you so much in advance and take care!!

Bethany

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Comments

  • challengercchallenger Posts: 1,209
    edited 07/18/2019 - 2:32 PM

    Bethany


    Welcome to the Veritas Health Forum

    Learn How to Use the Forum - Take the System Tutorial


    Sorry you are dealing with this especially at a relatively young age, I am 20 years your senior now, but I started this spine journey at 23, so I somewhat understand, mine was lumbar, the neck did not come to years later, I had ACDF C4-C7 IN 2018 and did very well with it although I still have moderate to severe spinal stenosis, after my disc problems were taken care of I have been satisfied with the results so far, I am not pain free at the moment, but it is liveable, hopefully the neurosurgeon will have a treatment plan for you that will happen fairly quickly.
    Take care and keep us posted

    Chip
  • Thank you so very much Chip and my prayers are with you as you continue to fight the good battle.  Did they ever discuss laminoplasty with you to treat the stenosis?

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  • So far I have not discussed anything as far as treatments go, my major cervical issue along with the stenosis is 3 large bone spurs that are compressing the cord, at this time surgeon wants to wait and see, he says that they should reabsorb if given time now that the instability is gone after surgery, if it doesn't mean surgery, i am for that.

    Have they mentioned any treatment plan for you so far?

    Take care and keep us posted

    Chip 

  • Not yet, the clinic is still awaiting copies of my MRI before they will schedule me... here's what the MRI notes (I have no idea what to expect at all)...

    C3-C4: Disc osteophyte complex with central/left paracentral disc protrusion indents the ventral thecal sac and contacts the ventral cord. No significant spinal canal stenosis. Mild facet arthrosis without neural foraminal narrowing.


    C4-C5: Disc osteophyte complex with central/left paracentral disc protrusion indenting the ventral thecal sac and contacting the ventral cord with mild spinal canal stenosis. Uncovertebral and mild facet arthrosis with moderate left neural foraminal 
    narrowing. The right neural foramen is patent.


    C5-C6: Disc osteophyte complex with left paracentral disc protrusion indents the ventral thecal sac and left ventral cord with mild spinal canal stenosis. Facet and uncovertebral arthrosis with mild-moderate left neural foraminal narrowing. Mild right 
    neural foraminal narrowing.


    C6-C7: Disc osteophyte complex with central disc protrusion indenting the ventral thecal sac and contacts the ventral cord with mild spinal canal stenosis. Facet arthrosis. Mild-moderate left neural foraminal narrowing. Mild right neural foraminal 
    narrowing.


    C7-T1: Facet arthrosis without spinal canal stenosis or neural foraminal narrowing.

  • L4_L5LL4_L5 Posts: 1,416
    edited 05/13/2019 - 12:50 PM

    Hopefully you don’t need surgery and this can be treated conservatively. I noticed the word “mild” nine times in the MRI report and the word “moderate” three times.

    My lumbar MRI has wording on it like “herniated disc impresses the thecal sac.” Every medical doctor I’ve seen has said impression on the thecal sac isn’t a big deal. It’s like gently pressing your finger into the side of a water balloon they tell me.

    However, I did see a chiropractor who said in his opinion impression on the thecal sac can cause pain and neurological symptoms. 

    Therefore I’m unsure which is correct.

    Have you tried any conservative treatments with little to no success?

    My MRI mentions mild stenosis at multiple levels as well and I’m not a candidate for surgery. Therefore hopefully you can find conservative treatment that helps especially since you’re in the first half of your 30s still.

    Good luck and please keep us updated.

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  • challengercchallenger Posts: 1,209
    edited 07/18/2019 - 2:36 PM

    By the forum rules we are not allowed to interpret any diagnostic test, even if we did your surgeon would see thing's that we could not, they may even have a different opinion than the radiologist,

    Hopefully when you see the surgeon they will have a treatment plan to get you back where you need to be.

    Keep us posted

    Chip  

  • This is super helpful!  I didn't at all intend to break rules, I was just hoping to have somebody to talk to (like you) who can help me understand the extent based on their own history.  This is incredibly helpful and I reallllly appreciate the time you've taken to help walk me through this process.  Thank you again and take care, God bless!

    Bethany

  • challengercchallenger Posts: 1,209
    edited 07/18/2019 - 2:36 PM

    Bethany

    You did not break any rule by posting your results, we just can't comment on them, what I said about your surgeon looking at your scans and coming up with something different is true, I will use my own case as an example, I had a scan on my cervical, radiologist report said severe spinal stenosis at 3 levels, which obviously had me worried, surgeon looked at scans and said that he did not think it was nearly as bad as the report stated, he indicated that it is something we need to keep a check on, but right now we didn't need to do anything about the stenosis.

    I hope your appointment is soon, the waiting and wondering is terrible on you I am sure, if I can be of any assistance, do not hesitate to ask.

    Take care and keep us posted

    Chip

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