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Early April Fools?

earth2robineearth2robin Posts: 51
edited 06/11/2012 - 9:01 AM in Neck Pain: Cervical
Hi! I am having an ACDF in 10 days on the C6/C7 level. I have other cervical levels with issues (please see profile) but none as bad as the C6/C7 level. My symptoms include numbness, weakness, clumsiness, shaky (like tremors), plus neck and arm pain. I went to several doctors and specialists with Medicaid and was "non"-diagnosed and sent home to live with the pain. Then Medicaid cancelled me X( and I got new insurance so I followed through with an orthopedic surgeon consultation I had previously set up where I was diagnosed with cervical myelopathy. He recommended surgery ASAP because he said after looking at my MRI images that my spinal cord was severely compressed. He ordered a myelogram the day before the surgery. The order also indicated potential ossification of the posterior longitudinal ligament.

Now a week and a half later, I have been having a good week. The pain has not been as bad, though the numbness has spread to new places (my face and tongue sometimes!). The weakness is the same as is the ringing in my ears. Because I am having a good week, I am also having this irrational (?) fear that after my myelogram next Tuesday, the doctor will come in to see me and say " April Fools! You don't need surgery now!"

So I guess my question is, based on everyone else's experiences, can a spinal cord decompress itself in a matter of a month? Do the symptoms of cervical myelopathy vary that much from day to day?

Even with the pain better this week, the other symptoms are still present so I would literally just die if I get told I should just manage the symptoms with injections again, which do nothing for my main symptoms! :S


  • My advice would be to get a second opinion. Spine surgery should be contemplated very seriously and [IMO] one should exhaust all other avenues for treatment/s before resorting to surgery, as there are no do overs and also no guarantees.

    It's fairly common for people awaiting surgery [& knowing their surgery date] will feel better once they know there is a possible solution in the near future for their pain, just to have the pain return upon rescheduling the appt. This is just a very personal decision.

    I have no idea if the spinal cord can decompress itself in a matter of a month, but I'm certain symptoms of cervical myelopathy can vary a lot individually [person to person].

  • I see that your profile mentions bony spurs and osteophytes.
    If that is what is compressing your cord, then they are not going to go away.
    If it is just your disc, and a soft disc not a calcified disc, then it may draw away from the cord.

    The fact that you have lots of degeneration, makes me think that it is 'hard stuff' that is causing you problems and that will not suddenly disappear.

    I have a similar degenerated neck and have been told that I will need to have surgery.
    My pain management consultant told me that steroid injections wouldn't help because my compression is from 'hard things', so won't be going anywhere.

    I must say that shortly before my lumbar surgery, I did have some improvement and wondered if things were going to go away. They didn't! I did get a lot of relief from the surgery though, and am glad that I had it.

    I do find that my cervical myelopathy symptoms do come and go and that some days are much better than others. I am always very pleased on those days!

    I wish you well with your surgery and will look forward to hearing how you are getting on.

  • Hi Jellyhall,

    In answer to your question, all of the above is pressing in on my spinal cord I believe. I was so flustered when the doctor told me I needed surgery that I forgot all the details; however, I know that my disc is compressing the spinal cord as well the osteophyte. There are bone spurs in there, I am just not sure if they are compressing the spinal cord at the C6/C7 level. In addition, on the order for the CT myelogram, the doctor indicated potential ossification of the posterior longitudinal ligament. I have a whole lot of questions prepared for my pre-op appointment next Tuesday! :S Also, the arm and neck pain is back today. I feel like I am going crazy with how different things are from day to day.

    After my lumbar surgery, I felt 100% better, until I was discharged and that night developed a headache that got really bad when I stood up. I had developed a CSF leak and required hospitalization with exploratory surgery and a lumbar drain, so 2 lumbar surgeries in a week. Now there is lots of scar tissue and a small bulge, but overall I will never regret that first surgery as I can actually sit down and sleep now. I expect that's how I will feel for my ACDF, too.

    What I am just terrified of is my doctor changing his mind, as mentioned in my first post. But really, this fear I think stems from how many doctors I went too with Medicaid who did not treat me nor diagnose me with anything. I went to 4 different doctors trying to get some treatment to no avail, so I think that is why I fear this. As soon as I changed insurance companies, I received a diagnoses with a treatment.

    I can't wait to be back to normal again when my whole life is not consumed by my back. Now I just have to convince my husband that I will not be an invalid the rest of my life. If Peyton Manning can return to the NFL after a 3 or 4 level ACDF, then I can ride my bicycle and eventually snowboard again after a one level ACDF. I understand that eventually my adjacent discs will complete the degeneration cycle and I will probably end up back where I am today, but I still have lots of life to live with my young kids. :)))

    9 days!
  • Hi Robin!

    I think you are right that I could be feeling better simply because I know the end is in sight. I know I am certainly looking forward to it, in fact I can tell you now there are only 9 days left until the scheduled surgery! ;)) Considering the pain has always returned in the past, it is just a matter of time. Today, the pain is actually close to the normal level. The change in the degree of symptoms from day to day is driving me crazy! :S

    Regarding the second opinion, this is actually my fifth opinion, considering my unanticipated change in insurance, the lack of treatment options, and lack of a diagnoses.

  • E2R, My symptoms were very similar to yours...after the sudden onset of my symptoms when they were very bad they slowly improved and by the time of my ACDF C5-C7 2/21/12 I also wondered if I could just live with my cervical myelopathy and maybe I could get away with not having my surgery because I was so scared of the whole situation. In my case my neurosurgeon explained to me that my neck was so bad and my MRI showed so much pressure on my spinal cord (I also had spurring) that my symptoms would eventually worsen and I had no alternative but to have the surgery. I did get a 2nd opinion and he agreed with the 1st neurosurgeon, and because I liked his less aggressive approach as to how many levels he would fuse I went with the 2nd opinion doctor to do my surgery. Both neurosurgeons also told me that I had absolutely NO cushion for my spinal cord and in the event I fell or was in a car wreck with jarring or injury to my neck I could end up with permanent paralysis possibly. At three weeks post-op my symptoms are gone and at this point I'm glad I had the surgery...time will tell. Just my experience but wanted to post a reply, everyone's situations are different. Hope you have success with whatever you decide but as far as your doctor changing his mind about you needing the surgery they go mostly by what the MRI shows I think, not on your symptoms. At least my doctor did.

  • It strikes me that if you have young kids, you must be very young to be suffering all this degeneration and problems with your neck (and lumbar spine).

    Have they given any ideas of why?
    Is it genetic?

    I am much oldeer than you (50s) and they have told me that I am young to be having so much degeneration throughout my spine. I was very double jointed as a child (a bit now too) and they say that could be part of the reason. I also have a small spinal canal that doesn't help.

    I hope that as you prepare for your surgery, you will gain a peace about it that will carry you through until after the surgery.

  • Hi jellyhall,

    Yes, I am in my early 30's withe 5 kids ranging in age from almost 10 years old to 18 months old. All girls :SS

    I have also wondered whether it is genetic; however, I did somewhat injure my neck and arm while playing high school sports which limited my range of motion in both for a couple weeks. The sports medicine trainer insisted it was just sprained so I never sought treatment with a doctor. Ever since then, my neck and shoulder area have always experienced spasms and pain which worsened over time. My lumbar issues appeared overnight in 2010 while pregnant with twins in my third trimester. I woke up one morning with a limp and extremely bad sciatica which developed into cauda equina syndrome within 9 months.

    Whether or not this is genetic is a question I want to ask my doctor next week. My father has back problems including DISH as well as all of my sisters (3 of them). My sisters do not have DISH, they have problems associated with injuries; however only one of the injuries really seemed severe enough to cause chronic back problems.

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    Post Edited by Authority Member Liz
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