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Does Central Cord Compression Always Need Surgery?

Hello,

 I'm a 35yo F diagnosed with 

1. scoliosis of the cervicothoracic spine at age 10 ; 

2. A retroflexed odontoid diagnosed after severe headaches at age 16-17 (~20 yrs ago) ; 

3. At age 26 (9 years ago), after a bout of bungee jumping (trying to impress my new boyfriend and just ended up with headaches and neck pain from hell): 

     A. Ehlers-Danlos Syndrome, "Type IV, probably"

     B. Occipital Neuralgia 

     C. the odontoid effacing the ventral thecal sac (but not abutting the cervicomedullary junction) with central canal narrowing (but not meeting the strict criteria for stenosis, measuring 10.8mm), 

     D. C2-C3:

         1. Mild spondylosis

         2.Uncovertebral Hypertrophy (mild)

         3. Bone spurs

         4. Foraminal narrowing leftward

         5. mild facet arthropathy

     E. C3-C4

         1. . Mild spondylosis

         2.   Uncovertebral Hypertrophy (mild)

         3.   mild facet arthropathy

     F. C4-C5

         1. Mild facet arthropathic changes

         2.   subtle, non-compressive mixed protrusion , without frank neural encroachment

     G. C5-C6

         1. minimal non-compressive protrusion, with very slight effacement of the ventral thecal sac.

         2. mild facet arthropathy

     H. C7-T1

         1.    Mild spondylosis

Pain meds, NSAIDs, muscle relaxers, and Facet joint injections were given, which helped a lot.

4. At age 31 (4 years ago), the pain came back with a vengeance after working flood jobs with my husband who owned a carpet cleaning business at the time. This time, I had them order an upright MRI to rule out Chiari and Tethered cord syndrome, both of which happen a lot with EDS.

     A. C2-C3

         1. similar mild osteophytic ridge combining with uncinate hypertrophy 

         2. similar mild, left neural foraminal narrowing "without significant spinal stenosis"

     B. C3-C4

         1. mildly increased disc osteophyte complex combining with increased uncinate hypertrophy 

         2. mildly increased neural foraminal narrowing, very mild on the right, and mild-moderate on the left, "without significant spinal stenosis"

     C. C4-C5

         1. similar small disc osteophyte complex combining with uncinate hypertrophy 

         2.  similar mild,bilateral neural foraminal narrowing "without significant spinal stenosis"

     D. C5-C6

         1. mildly increased disc osteophyte complex combining with increased uncinate hypertrophy 

         2. mildly increased neural foraminal narrowing mild on the right, and mild-moderate on the left, "without significant spinal stenosis"

     E. C6-C7

         1. mildly increased disc osteophyte complex combining with increased uncinate hypertrophy 

         2. "mild new, very mild bilateral neural foraminal narrowing without significant spinal stenosis" 

     F. C6-C7: No significant disc displacement

The spine surgeon said there was absolutely nothing that could be done for me, and we ended up moving to a new area, where I was able to use cannabis and other modalities to self-treat the pain and headaches.

5. Age 33 (2 years ago), neck pain and headaches became unmanageable again. PCP ordered an MRI:

     A. C2-C3

         1. Minimal posterior disc bulge does not indent the cord or cause canal stenosis

         2. mild to moderate bilateral uncovertebral hypertrophy is progressed

         3. mild to moderate left foraminal stenosis is noted, previously mild

         4. new mild right foraminal stenosis is seen

     B. C3-C4

         1. Minimal posterior disc bulge does not indent the cord or cause canal stenosis

     C. C4-C5

         1. Minimal posterior disc bulge does not indent the cord or cause canal stenosis

     D. C5-C6

         1. Minimal posterior disc bulge does not indent the cord or cause canal stenosis

     E. C6-C7

         1. Minimal posterior disc bulge does not indent the cord or cause canal stenosis

     F. C7-T1: Unremarkable

No treatment was offered, no referral to a specialist given.

6. Age 34 (last year): Had a SLAP tear of the right shoulder repaired, subacromial decompression and debridement via shoulder arthroscopy. Surgery was a success, although I fell down the stairs and onto my right elbow, which made the repair hurt, but also gave me a strange headache at the base of my skull for several days afterward. Since then, there have been two new partial rotator cuff tears diagnosed, but the pain radiates down the arm all the way now, when previously it was only to the elbow. Started feeling numbness, tingling in both arms and hands, dropping things constantly, retaining and leaking small amounts of urine constantly, and having constant or near-constant headaches (at the base of the skull and radiating to the rest of the head), all of which have gotten progressively worse since. Also, my hands and arms (moreso on the right than the left) are always getting cold for no reason, which resolves for a few minutes when I use my TENS unit.

7. After shoulder surgeon reviewed the C-spine MRI from 2016, suggested that I see a spinal surgeon because he thought he saw a syrinx somewhere in there. MRI ordered back in June, but ins. didn't approve until last month. Am also having to wait months to see the spinal surgeon, because my insurance changed last month and my new insurance doesn't take either surgeon anymore, so I've had to find new shoulder AND spine surgeons to take me on as a patient. I've been waiting 3 weeks for the MRI to arrive in the mail so that I can see the report, but received a call from the PCP last week and the nurse asked if I had an appointment scheduled with a spine surgeon, because:

     A. "The arthropathy has progressed."

     B. "There is a disc herniation that is compressing the central spinal cord." (She didn't tell me which disc it was).

Sorry to be so long, but does anyone else have any experience with central cord compression, and if so, is surgery usually necessary? I am back in pain management since August because it's been utterly excruciating, and I would like to get this fixed so that the pain will be relieved and I don't have to continue going to the pain management doc every 30 days and keep popping pills all the time to stay at least halfway functional.

If surgery is usually necessary for this kind of thing, how long is the recovery usually, and how long does it take to GET the surgery? Also, am I over-reacting by wanting to get in to see a surgeon and have this fixed quickly? I've had a dozen surgeries throughout my life, but have never had neck or back surgery, and never wanted to, until now. 

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Comments

  • LizLiz Posts: 2,265
    edited 07/23/2019 - 1:08 PM
  • If I were you I’d see a surgeon. 

    It’s too hard to provide much more information because everyone’s injuries vary and what methods are prudent and successful for one person may not work for the next person.

    Have you tried any physical therapy or injections?

    Usually doctors want to exhaust all conservative methods first. 

    But some people may have something significant enough on their MRI where surgery is recommended sooner rather than later.

    Good luck and please keep us posted.

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  • dawn83ddawn83 Posts: 2
    edited 12/03/2018 - 1:34 AM

    Thank you, L4-L5. I'm going to, I just wish I knew what to expect and whether or not they'll recommend surgery now, or a "watch and wait" approach.

     I've had 6 shoulder corticosteroid shots put in since 2015, with 5 from 2015-2016 (and after the 5th one failed completely, they finally did the SLAP repair), and then another one a few months ago, which also didn't work at all for any of the problems I'm having in my right shoulder/arm. 

    As far as the neck is concerned, my pain management doc in 2011 did facet joint injections (multiple levels), which were diagnostic AND they were meant to relieve pain, which they did both. Since then, however, I've had no injections in my spine whatsoever. My PM now is only using medication, although I've told her that I'm interested in doing any kind of injections that she thinks may help me.

    I've done several rounds of physical therapy for my C-Spine AND shoulder, from 2014-2016 (for neck) and 2015-2018 (for the shoulder), although PT only seems to have made the pain and nerve symptoms worse, not better. Massage therapy used to help, but since earlier this year, has only made the headaches and muscle spasm worse. Chiropractic therapy has helped somewhat with the mid and lower back pain (I have some bulging discs and facet arthropathy in the T2-T3, L2-L3, L3-L4, and L4-L5, along with a central mixed protrusion in the T7-T8 disc), but has never helped with the headaches or the neck/shoulder/arm pain.

    I'm just worried because I'm having difficulty swallowing and am drooling and choking on food and drinks a lot, etc. and with central cord compression and Medicaid insurance (I live in a Medicaid expansion state), I feel like they're going to blow me off until it's so bad that the damage is permanent, due to how low the payouts are to the neurosurgeon in question, vs. private health insurance through BCBS or United. 

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