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Chronic stiff neck turns lethal. I survived but it all remains a mystery.

BigenigmaBBigenigma Posts: 3
edited 12/19/2014 - 10:01 AM in New Member Introductions
Hi everyone! here is my miraculous and riveting story: Just over 1 month ago, I had an emergency cervical fusion of C1 and C2 due to an extreme subluxation of unknown cause. let me explain: 2 years ago I woke up with a stiff neck, which progressed over the next year. 1 year ago, it suddenly and mysteriously blew up, leaving me with a permanent horrible tension headache at the base of my skull, and a ROM of less than zero (my head was off to the right and couldn't even go straight). Any attempted movement, or elevation change brought terrible pain. a couple months later I finally had an MRI - which came back as non-remarkable. so we went the alternative route of chiropractics, physio, massage, yoga and relaxation, which helped my everyday functioning and ROM a bit. However, 2 months ago, I developed additional symptoms: both my hands were numb and tingly. I was advised to go to the ER, and I got another MRI done. the results came back as urgent, and we sent CD's of both my MRI's to a top NS who immediately instructed my to get check in at the ER and he'd do emergency surgery. When we met for the first time in my hospital room to discuss the surgery, he freaked out that I wasn't a bedridden vegetable. He had done 9000 spinal surgeries, and all other cases of 18 mm subluxations had been on dead people.
Only then did I realize what an unbelievable existence I was living. An otherwise healthy 20 year old enduring excruciating pain which everyone wrote off as stress - and I had gotten my Bachelors and started working full time in the meanwhile...
By the time I had the surgery one month had passed since the numbness had started. Over that month, the numbness had spread to my whole body. my legs were unbalanced, I could hardly write, and had warm, tingly, and sluggish sensations all over. I even had trouble urinating. All these symptoms were a result of my spinal chord being compressed into a space of 3 mm. Apparently my medulla was compressed as well. At that point, It was so dangerous that my NS said I was at risk for sudden death. He was very upset that the radiologist had overlooked the subluxation which was already serious on my first MRI. He said I should have had this surgery a year ago.
The surgery was very risky, since my neck was so unique and unpredictable, and C1 and C2 are so high up. It took about 5 hours. Thank G-d the outcome was the best case scenario.
I woke up from the surgery and all my pain and most of my numbness was gone (most of my head still remains quite numb). honestly, I don't consider any of the minor discomfort that i experienced post-op to be pain. I know this is not the case for most people, and I am very thankful.
Besides for a complication where I stopped breathing when my breathing tube was removed post op, my recovery has been incredible. I was in the mall a week after surgery, and was back to work full time after 1 month. I'm wearing a neck brace for another few weeks - thank G-d for scarves!
I'm thrilled with my new pain-free existence, but still have unanswered questions:
1) WHAT ON EARTH CAUSED THIS IN THE FIRST PLACE? any ideas of specialists i should see that could shed some light as to what cause this random stiff neck that turned lethal? (i will see a rheumatologist in a couple months)
2) Is it ok for me to jump/do light excercise - or should i be really gentle to allow my bones to fuse (surprisingly, im finding it hard to get guidance about this)
3) Can anyone else that had a neck brace tell me if its normal for it to constrict my throat and cause hoarseness? and how much physio ill need after - and expected ROM?
thank you for reading! Its so good to have discovered these spine related forums. makes me feel normal (even though my NS said this case is one in 5 million lol)
wishing everyone only health and happiness!
Noa Orr


  • LizLiz Posts: 7,832
    Nobody on the forum is medically qualified to advise on exercise I suggest you discuss this with your doctor
    Welcome Message

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • dilaurodilauro ConnecticutPosts: 9,842
    edited 12/19/2014 - 12:02 PM
    But the moment I read you went to see a chiropractor AFTER you had a fusion I stopped reading anymore! Consider yourself very very lucky . Without that luck you probably couldn't have any dexterity forget range of motion to even make this post!

    Chiropractors are NOT the type of medical folks you want to see ONCE you have been identified with a disc problem. Even worse, once you have had spinal surgery
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • are the reasons that we caution people about seeing a chiropractor without knowing the cause of sudden symptoms. Allowing adjustments WITHOUT knowing the cause of sudden symptoms and pain in your spine, can result and too often does result in manipulations of the vertebre that can lead to issues like yours.
    YOU are VERY, very lucky in that you are here, and still able to walk.... a sudden worsening of your symptoms may have been related to allowing a chiropractor to make adjustment to your neck.......
    While chiropractors have their place in the medical field, they should NOT under any circumstances simply make adjustments without the proper imaging done first, to ensure that there is not an issue with the discs or nerves or vertebra themselves.
    I am not saying that the chiropractor caused this, because I don't know that for sure, but vertebra don't typically slip out of alignment without some causing factor....especially, that much of a slippage.
    As far as your recovery goes, you need to discuss those questions with your surgeon, regarding excercise, what you can and can not do.......and whatever you do, do NOT ever allow another chiropractor to touch you or your neck again.
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