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Seeking support and guidance

theresettherese Posts: 13
edited 06/11/2012 - 8:56 AM in Neck Pain: Cervical
I've been having such severe pain in my neck, upper back, and arms. My MRI says I have spinal cord compression at c4-c5 but none of the doctors I have seen seem to think it's a big deal. I don't know what to do. I'm not getting better. I'm only 18 and I can't even go to college right now because of how much pain I'm in. And I had to be homeschooled the last 2 months of my senior year as well because of this.

I feel like I am having symptoms of myelopathy. I drop things all the time and I'm constantly bumping into things. I have so many bruises from how many times I bump into things. My arms feel stiff and heavy and my finger and hand movements feel spastic and jerky. My legs are even starting to feel this way now.

I am scared and don't know what to do. I've only seen one spine surgeon and he basically brushed me off. My neck muscles are beyond tight. The muscles on the right side of my neck spasm when I move into certain positions. I feel like I am having upper motor neuron problems like spasticity, hyperreflexes, and hyperactive stretch reflexes.

I am sorry to vent like this but don't know where to turn. I don't know what doctor to see that will take me seriously even though I'm young. Anyone who has been diagnosed with myelopathy from spinal cord compression, what were your symptoms and did you have surgery? If so, how long did you have symptoms before surgery?

I know I have started posts numerous times, but I feel like my life is on hold until I can get treatment for this pain. Anyone who can offer any information or suggestions, it is greatly appreciated. -Theresa


  • Welcome to Spine Health :H

    I am sorry that at only 18 you are suffering so much with your spine.

    I understand that having compression on your spinal cord in your neck is very worrying, especially when you start to read about it and realise that it can be dangerous.

    When did you last see your spine surgeon, and when will you next see him? If he is not taking you seriously then perhaps you could see a different surgeon for another opinion.

    To try to put your mind to rest, I also have C3/4 and C4/5 compressing my spinal cord and have cervical spondylosis throughout the rest of my neck. I am having all sorts of pains and symptoms in my neck, shoulders, arms, abdomen and legs.

    My surgeon has decided to wait and watch me for 6 months to see how much things progress. Although I do have spactic spasms in both legs and around my abdomen, because I don't have Babinski reflex, he doesn't think that I need to have surgery yet and wants to try conservative treatment to see if that will help.

    I had EMG and nerve conduction studies a couple of weeks ago and am waiting for the results, although the neurologist did say that I definately do have compression in my neck.

    Hopefully that will reassure you that cervical cord compression isn't always a reason for immediate surgery. I do think however, that a second opinion might put your mind at rest. Also, you need a medically trained spine specialist to decide what needs to be done. (None of us are medically trained and can only give you our own experiences.)

    I hope that you will get some help and reassurance soon. Do let us know how you get on. :-)

  • Thank you for replying. I don't really have a spine surgeon. I have seen only one and he was only in there for 10 minutes and told me disc herniations were a normal part of spine degeneration. I do not agree with this because I am only 18 and never had any neck problems in my life until 2 years ago after a blow to the head.

    I don't understand why none of the doctors I have seen are taking me seriously... Not one doctor has allowed me any pain medication so I basically just suffer all day in horrible pain.

    I don't know if it is just the doctors in my area, but I have seen at least 3 doctors, a spine surgeon, a neurologist, and a pain managment specialist(who would not treat me and told me that I needed to do some yoga).

    They all refuse to entertain the possibility that this disc which on my MRI report says it is flattening the ventral spinal cord, is causing me any problems. I have recently begun having trouble breathing and am now worried the spinal cord compression has something to do with this.

    Anyone who has read this that has cervical issues, have you had an Upright MRI and did that show any difference in the condition of your disc problem compared to the laying down MRI. I am considering asking my doctor for an Upright or Dynamic MRI as I only have pain when I am upright.

    Once again sorry to rant and for the bitter tone of this post. Just frustrated and scared. I think I will try to see a neurosurgeon. Thank you for your response once again.
  • Hi therese. Very good question about upright mri and regular laying down flat mri.

    This was also my question to my last neurosurgen! But his answer was there is no diference at all. That it will show the same space within the disc as the regular mri.

    I have disputed this now with a few dr,s but they all claim no upright mri wont make no diference. I am not cervical so sorry not sure i can have too much input here,

    But very sorry you dealing with this at such young age. I know dr,s will avoid surgery at all cost untill they see you have done every alternative treatment because the risk involved in a surgery. One you have done all the alternative treatments the recomend then when you go back to see them yes they have to take you serious.

    There are a lot of other here i am sure that will have more input that might help you more. Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Wow, I am so sorry you are going through this. I know your pain... literally. I am 24 and mine started about your age. My issue was also with c4-5. It is not a common disc to injure, my surgeon said I am the youngest he has ever seen with a herniated cervical disc in that area.

    The shoulder and neck pain was the worst area, and I know exactly what you are talking about with the spasming muscles. It would feel like my muscle would spasm so bad and it would pull on something in my neck causing the worst pain ever. The pain became more and more frequent until it was constant. I also had weakness in my left arm and was also always dropping things with my left hand.

    You MUST find a different neurosurgen. I am not sure where you live.. PM me and if you are anywhere near me I will give you the name of mine.

    I had a cervical discectomy and fusion and I am doing so much better... I still have pain but I feel like I have my life back. Please keep me updated and keep in touch.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • P90X got me (during the recovery week of all things). I blew the disks between C4/C5 and C5/C6 into my cord and had cervical spinal stenosis with myelopathy to the point where it was restricting the blood flow in my spinal cord. I was 31 at the time.

    I waited two days before my wife made me see the doc, and those days were really painful. I'm just glad I didn't go to a chiropractor because that was my original plan.

    As for symptoms, each morning I woke up both my arms would be numb. I had pain and tightness in my neck and traps. It felt like I had to pop my neck like you would crack your back and it felt (rightfully so) that my bones were rubbing together. The thing that forced my doctor into ordering the MRI was that I had occasional pains down both arms, which he obviously stated could be something pressing on my spine.

    My primary care physician is a doctor of internal medicine and he basically told me I didn't have a choice for physical therapy and lined me up with a top notch neurosurgeon and within 48 hours I was under the knife. They both were actually surprised I was as functional as I was given the extent of the damage on the MRI. I wasn't given anything for the pain because they feared me damaging the spine in a drugged up state. They scared the living crap out of me when they stated I couldn't sneeze for fear of turning into a para.

    If your primary care physician recommends this course of action, I would follow it. If your MRI shows you can have pain relief from physical therapy/weight decompression, I would seriously consider that. If you are going to surgeons and they are not concerned, that is extremely odd because they usually recommend cutting before all else.

    As for the surgery itself (ACDF), it is a lot easier to recover from than lower back surgeries. Recovery for me was relatively quick and while I don't suffer pain today, I still have weird muscle spasms from time to time in my left arm. Honestly, worst part (other than the gallon of milk rule) was the constipation that followed from the opiates.
  • Welcome to spine health. I am so glad that you found this site. There are many people on here dealing with cervical issues that can relate to you.

    I agree that you need to keep looking and try to find a spine fellowship trained orthopedic or neurosurgeon to help you. It does not matter if you are 18 or 58, you are in pain and need help.I hate when doctor's dismiss people because of their age.

    Please keep at it, and keep coming here for support. We are here for you.

    Wishing you all the best!

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Hi. Thank you everyone for responding.

    alexhurting- I don't get why doctors are so reluctant about the upright MRI. It is only logical to assume that the discs would be under more load when you are vertical.. Gravity? Especially because I have zero pain when I am lying down. If the disc is flattening my spinal cord when I'm laying down with no pain, I don't want to even imagine what it's doing when i'm upright... Thanks for responding nonetheless.

    donnabe- Thanks for responding and I sent you a PM!

    dbutter- I am wondering how you knew that you 'blew your discs'. Did you immediatly get an MRI? Also did your MRI say that you had myelopathy. Because mine doesn't but it says the disc is flattening the cord so I am confused as to what constitutes myelopathy. As for your symptoms, that is exactly what I experience on a daily basis for the PAST 5 MONTHS NOW. I do not understand why these doctors don't get how much pain I'm in. I always feel like I have to crack my neck but I don't because I know it's not good to do so. And my traps are so tight that the only comfortable position is with my shoulders raised really high. As for arm pain, I have it everyday in both arms... SIGH. I am scared I am going to have irreversible damage. I am glad for you that you were able to get surgery and out of pain.

    ouch2- Thanks for responding! I only wish that the doctors in my area would realize that just because i'm young doesn't mean I can't be in this much pain and need surgery.
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