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this is where part of me is at

flowerfflower Posts: 460
edited 06/11/2012 - 8:53 AM in Neck Pain: Cervical
im copying some text to help expain, though in my case im not elderly, my disease degeneration started late teens (not the norm, nor is it common to get to this late stage this early in life) its usually happens to small % of elderly, where they are going to be departing soon

Myelopathy is a term that means that there is something wrong with the spinal cord itself. This is usually a later stage of cervical spine disease, and is often first detected as difficulty walking due to generalized weakness or problems with balance and coordination. This type of process occurs most commonly in the elderly, who can have many reasons for having trouble walking or problems with gait and balance. However, one of the more worrisome reasons that these symptoms are occurring is that bone spurs and other degenerative changes in the cervical spine are squeezing the spinal cord. Myelopathy affects the entire spinal cord, and is very different from isolated points of pressure on the individual nerve roots.

Myelopathy is most commonly caused by spinal stenosis, which is a progressive narrowing of the spinal canal. In the later stages of spinal degeneration, bone spurs and arthritic changes make the space available for the spinal cord within the spinal canal much smaller. The bone spurs may begin to press on the spinal cord and the nerve roots, and that pressure starts to interfere with how the nerves function normally.

Determining the amount of weakness that is present according to a standardized system can be used to assess the severity of each case of myelopathy. For example, according to the system of Nurick, myelopathy is graded from 0 to 5, with 5 being the most severe. The characteristic changes that occur at each different grade are as follows

i dont think there are many here with this, but if anyone has /knows or can give me some hope, insight, anything, i would be gratefull

i also have C1-C3 with severe nerve compressoin causing hell on earth nerve pain and inflammation throughout one side of head from bae of skull up head abd over to tempral regions, current episode, 3 1/2 weeks

is there anyone who has gone on to surgical intervention for this, or anything else

so, its C1- T1 severe advanced, this is anightmare scenario

any hope, insight, experience welcomed please

due to the headpain my other stuff been put aside for the mo as i cant even do daily ADL;s



  • Blauvelt, Carolyn Taliaferro and Nelson, Fred R. T., MD, FAAOS. A Manual of Orthopaedic Terminology. 6th ed. (St. Louis: Mosby, 1998) 282.

    2 Blauvelt, Carolyn Taliaferro and Nelson, Fred R. T., MD, FAAOS. A Manual of Orthopaedic Terminology. 6th ed. (St. Louis: Mosby, 1998) 283.

    here are the references for the section i copied


  • as you know I have also been told that I have mild to moderate myelopathy. I also get the headaches, but not as long lasting or as severe as yours.

    All in all, I am not as advanced as you. From things I read, the condition is likely to continue, probably getting worse in steps, with periods in between where things stay about the same.

    Flower, I really hope that your headache improves and eases very soon.
    What is your doctor's plan for you?

    My doctor is planning to review my case in October, after viewing flexion and extension x-rays and a full spine MRI scan. Meanwhile I am trying to get back to my life as much as I can. I am just grateful that my pain isn't nearly as bad as the pain that led to my lumbar fusion.

    Sorry I can't be more helpful.
    I do feel for you are am hear to support you.

    >:D< >:D< >:D<
  • thankyou so much for your support, i have been not able to function with these headpains, there 24/7 and so excruciating painfull, truely i have it severly

    the bad news in cases like this is the varied treatments have very limited sucess, its very difficult to get to the upper cervical nerve roots, huge major surgery , cutting open the dura to expose cord where the nerves come o

    ff and cut them

    there are less invasive treatments they can try, but they are typically not succesfull and short lived if they help

    as if i need this on top of the myelopathy, was trying to get my head around that, then this started

    one could just about handle a few days, but weeks of this is truely unbearable

    last visit with NS he was sending me a referral for NCS, and that was weeks ago, well i still havnt got it

    been in too much pain to care about that for now

    im going back to my GP this week, he wants to have a talk with me,

    thats really good news about the full MRI, and flex-ext your going to get,at least your going to have a thourough exam, and get a better idea whats what

    you will be in the tunnel for awhile with the full spine , will you cope with that ok?

    my eye is drooping from the pain as i get it from base of skull up head and to temporal region and eye,even my hair hurts and scalf is very tender and inlammed bone pain and arteries

    thats great your not having pain, makes it easier to think,plan,have some life

    i think i read in a post of yours when your saw that last dr, you had hyper-reflexia, was that leg or arm, unilateral or bilateral?

    hugs to you jelly
  • No Myelopathy here, but issues (complex of osteophytes and 9mm bulging disk) here, but C2/3. Thanks to the issues at that level, I go through similar headaches to which you describe, and they run in groups. E.g., a few days to a few weeks. They always start behind and slightly below my left ear, then wrap around the base of my skull, and if in a bad way, will extend into a full skull cap like headache. I have Imitrex for when they get going full speed. When I have them, I don't even think about getting out of bed short of hitting the "litter box", and then with caution.

    I'm so sorry you're going through all this. I wouldn't wish these damn headaches on my worst enemy. Unless something changes, so far they aren't going to do any intervention at the C2/3 level...yet.

    Just keep after your doctors to find a solution. Nerve pain is bad enough, couple that with ridiculously painful headaches, and many of us hit our limits. I hope it gets better soon for you Ms. Flower. Big *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I hope that your GP will really listen to you and will think of a way to help (or at least refer you on).

    When having my MRI, hopefully I will be able to listen to music. Last time I had one, I could hardly hear the music above all the clonking and banging. It does help me to relax to listen to music. When in lots of pain, I find lying down and quietly listening to Christian music really helps me. The scanner they will use on 2nd June is slightly bigger tunnel than the mobile one I had my first lumbar MRI scan with. I will close my eyes and try to focus on something else.

    I have thought for a long while that they should just scan the whole spine to see what is going on. I'm pleased that at last someone agrees with me. It is 2 years since the first lumbar scan showed three herniated discs in my thoracic spine, with one mildly compressing my cord. I wonder if that has got worse now. I am certainly having more symptoms from that part of my spine now. The report then said that it was a shame that the scan didn't go up higher.

    My hyperflexia was in both arms. It was strange the way he tested my leg reflexes, so not sure how accurate that was. I was lying down with my leg in the air?? The exam was started by a student who was very unsure what he was doing so the doctor took over.

    I try to think each day, that I am still alive, still walking and not in as much pain as I used to be, so life must be good! (I don't always manage to stay so positive, but I try.)

    I'll be thinking of you flower, and particularly that your headaches will fade and that you will be more comfortable. Do you get pain in your ears with them? When my headaches are bad, I get a terrible throbbing in both ears with it.

    Keep well >:D< >:D< >:D<
  • I am almost 3 weeks post 4 level ACDF (C3-7). I had myelopathy at C3-4 and moderate - severe stenosis at C5-7. I had radiating pain down the arms and legs, hyper-reflexes in arms and legs and some test where they "flicked" my finger tips. I think I am recovering as well as could be expected - really tired. It's still too early to tell about how much pain or other issues may be relieved, but my surgeon said the main purpose of the surgery is to prevent the situation from getting worse.

    I hope that you all find relief soon.

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Has your doc tried you on any combination of anti-seizure meds at all? I may have missed you mentioning it somewhere, so forgive me if you have already.

    Surgery at C1-C2 is no joke and is the first surgery I made certain I discussed advanced directives and arrangements with my husband and NS before the surgery. Recovery from the posterior approach used, is far worse than any of the lumbar surgeries I have gone through. Of course the wonderful thing about the human brain, is we can forget a large amount of that pain once it is past us.

    I'd be curious to see what your GP has to say. Have any of your docs recommended a trial for an occipital nerve stimulator?

  • my head pain is from the occipital nerve, i cant even wash my hair as head,scalp,is like so inlammed ,tender which extends to eyes forehead and now down side of face

    im glad the limitrex helps you

    as far as wishing thses excruciating headaches on worst enemy, i can think of 1 evil person i would give mine too, that may sound bad ,but really .....

    why cant the evils of this world get this,that would stop them doing more harm

    think this pain is really effecting me, emotionally too

    thankyou brenda for your support
    hugs g/f


    i said the same ages ago in a thread, when you have probs , at cervical,thoracic and lumbar and S1, (which i do), a full spinal scan is needed coz the whole damn spine is connected,

    im angry bout my last MRI was cervical, NS wrote left out some levels on referral, so i rang radiology place and asked ,will you do all cervical levels,they assured me they would,then on arrival i ask tech who was performing scan,he said yes

    well he didnt,left out C1-C2, where i have long standing verified scan results of ostephytes and degeneration

    now that area needed scanning, and esp now as that is where the occipital nerve is trapped

    that could have helped shed some light

    like you,ive sure had some bungled stuff ,that could have been handled so much better

    re the tunnel, my,ive never bin in a mobile MRI, on a lighter note, im a bit weired,as those really loud thumping and odd noises made me laugh the first MRI i had,and all i could think of was it sounded like that terrible kids music, lol

    the only thing i would find difficult having full scan at once is laying in one position that long, so i would ask to break up the areas,possibly,an hour apart or similiar

    re your leg in air relex test, sounds strangedid they tap your pattaller with leg in air?

    sounds more like a straight leg rasing test

    thankyou jelly for thinking of me, yes its easier when the pain is not severe,so hoping this will stop,its 4 weeks now

    hoping your scan goes well, and once again good your getting the full spinal

  • yes,the goal of surgery is to prevent more damage,and karen, i so hope you will get improvement

    it is early days yet after your surgery,all those nerves and insides need time to adjust and calm down

    was your compression to cord from your discs? is so,once they removed ,well they cant come back to get you , lol

    the trouble with the osteophytes in my case is there flattening my cord,its a dangerous risky business to remove,due to may damageing cord when removed

    the finger flicking test is a clinical test done to elicit a sign which helps in the diagnosis of myelopathy

    karen thanks for your support and hope you continue healing well
  • Thanks! So far it seems that my hyper reflexes in my legs are from my upper and lower lumbar spine. My revision and back surgeries (like you) will be to prevent further damage. From my neck I've lost a lot to the right, and won't (most likely) get much if any of it back, but just knowing it won't get worse, works for me at this stage!

    I hope your recovery continues to show improvement. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Me and Joydancer compare notes a lot of the times, and she too has C2/3 issues as I do, though slightly different. The Occipital nerve issues arise from the C1/2/3 areas. They almost always start at the base of the skull (and with burning) and spread from there.

    When my headaches have gotten really bad - bad to the point even my hair seems to hurt? I don't even bother getting into the shower, as I know just the added pressure on my head from washing my hair, and too the movement will make it even worse. Sorry you're going through that.

    As far as "wishing them" on your worst enemy, (head down in shame), sadly I can think of 2 I would gladly give them too as well! (insert evil grin here).

    I had a fluke event (I hope its a fluke) yesterday morning after taking my Lyrica. I have a bad gag reflex, and as usual gagged a bit taking my Lyrica. Within seconds of gagging, I had burning behind and below my left ear, and then it wrapped around my head, and within a minute of so,"skull cap" to just above my eye brows. The pain got so bad I almost ended up on the floor, and when I was this > < close to calling my hubby to take me to the ER, it started backing off. A low grade headache is still there, but just on the annoying mode. That was creepy.

    I hope you're feeling better soon girlfriend. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • unfortunatly for me, the seizure meds are contraindicated with some of my illnesses and meds

    this is the trouble when you have multiple illnesses and take meds for other medical conditions

    its sucks that they might help and i cant take them

    c, i fully understand why you made the advance directive, i have also over the past few weeks been thinking of this also, its worrying me re my future and the surgery at this level is so terrifying

    c, you have been to hell and back and endured so much, i am truly sorry, the surgery, the impications of what can happen and what surgical intervention is required for this truly excruciating,disabling illness is truely horrendous

    i am almost too scared to have my dr visit, but i will

  • the gag relex thing is scarey, i get some occasionally, pretty sure its coming from upper cervical, hell you think your going to choke to death

    you no that probably set off the head pain you had, its all so inter-connected, glad it didnt last long for you

    yes, occipital nerve is C1-C3, my dr confirmed this, as was able to feel and trace the painfull nerve, plus my symptoms, gave me a occipital steroid/lidocaine block, but it didnt help much and didnt do anything for where it reaches my temporal area

    yes, movement makes it worse, so bin in bed, and im getting all this pressure too in my head and ears

    brenda, my head is so inflammed ans tender, and my eyes, i not thinking so straight, so i cant remember what issues you have with C2-C3, i no your other cervical

    thanks for support and hugs g/f

  • Howdy Flower,

    Off to bed shortly. I was within a minute or so of calling the hubby in from outside to take me to the ER when it suddenly started to back off.

    As for my issues, just click my name above my picture - I've updated. At my C2/3 I have a moderate to severe osteophyte complex that is causing a 9mm posterlateral bulge of my disk at that level - about 2-3 mm from the cord. The left exit nerve is marked with stenosis due to the osteophytes. Due to all that, I get headaches, have most of my neck numb, and get ringing (occasionally) in my ears. The headaches are the worst from the C2/3.

    I have opted out from the shots as they have not helped me in the past, and I'm no longer willing to go through the cost for no effect.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • thankgoodness it backed off enough, so you didnt have to go ER, i hate the thought of sitting in ER waiting room, can take hours to be seen and when in such pain,last place you wanna be ,uncomfortable chairs,strangers,noise etc

    can put with, but its the long waiting times, not sure how it is where you are,but here can take like 5-10 hrs

    so ,im glad for you you didnt have to go, of course if you do well you do

    hope you feel better in the morning, take things easy

    your C2-C3, not good, damn those osteopyhtes, i do no about your other issues and have been following those as you no, just had a mental blank on your C2-C3

    rest well

  • Do you know how long a full spine MRI scan will take?

    Made me giggle, thinking about the knee reflex test with my leg in the air. I just don't know what they were thinking!! Always before, I have been seated with one knee crossed on the other. This time, I was lying on my back on the couch, and they tapped my knee while my leg was in the air! I though it was strange, but assumed that it must be another way to do it. Now I am not sure!!

    I'll keep thinking of you and hoping that the constant headache will fade away. I wish I knew a wonderful technique to get rid of it for you.

    I have a lumbar scan in 2 weeks, but the full spine scan will have to be later, because they want to leave me 6 months (4 now) and then check to see how much worse things have got. I am glad that MRI scans don't harm us - I seem to be having plenty of them!

  • "Mental Blank"..lol, I wish I could have a mental blank for my spine! (G)

    We have 2 particular hospitals "of the many" that if you are in obvious distress they will move you to the front of the line - sent to like a quick triage type thing. My hubby and I do the 45 minute drive to the first one as they were great with me when I had a strangulating tumor that I didn't know about!

    Oh, and those same two hospitals? They have billboards all over South Florida with 'real time' ER time wait status! Pretty neat huh?

    I hope you're feeling better today Flower.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Jelly,

    If it helps - just went through mine. If you have contrast (with and without) expect to be in the tube between 2.5 and 3 hours! They don't just do a sweeping scan over your whole spine, they still do it in their respective segments. They did each segment on me (no contrast, then added the dye and rescanned me and I was done. On my CD, Lumbar, Thoracic and Cervical are still separate programs.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • brenda those real time wait times billboards ,how cool and helpfull!

    we wouldnt get those here, would be too much of an embarresment to advertise the long wait times

    its a big problem here

    jelly, there you go, brenda has had the full one,
    and given you the info, i guess if your not having the contrast it would be a little under half that time

    before the MRI was invented and introduced here, i have over the years had loads of exposure to radiation fron x-rays and CT scans for my spinal probs, bit of a worry, but needed, even with the intro of MRI, x-rays and CT still neede and way less expensive

    where i live, you have to be referred to a specialist to order one

    hope all shows well in your upcoming lumbar MRI

    thankyou both for your well wishes
  • Flower,

    They use to be awful down here too! One of the big things most hospitals do now is post treatment surveys. Once those started coming back, and too the "no buck, no Buck Rogers" rubber meets the road for profit, they started cleaning their acts up but fast! (G)

    One hospital they found was sneaky and affecting a 'time to wait' bulletin board stat. They would bring everyone in to the receiving desk within minutes of arrival (name, insurance, issue etc.) and counting that as time to 'be seen.' That crap stopped fast too, and was now recorded as "seen by a physician." Rofla!!!

    Off to bed shortly. I hope your day went better than those of late Ms. Flower! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.

  • With your total spine MRI scan done in sections, were you able to get out for loo stops, or at least move about a bit?

    3 hours lying in the same position is not going to be at all easy. Even 1 1/2 hours without moving will be a challenge.

    Even during the night, I have to completely change my position and rearrange my pillows every 2 hours as the pain starts to build.

    Oh well, I am sure that I won't be the first person to find it hard.

    Hope you are all having a good day. :-)

  • Jellyhall,

    All I needed to do was wiggle around and stretch between the segments. Most MRI techs I have had are very supportive. I will gather if you relay to them that you will need breaks, they can and will put that into the imaging process. Once they do the contrast though, they need you to stay still so the area being looked at matches the area they sliced without contrast.

    Even though we talked before the MRI, my technicians verified on each segment if I was okay to continue, or needed a break. :) They also brought me water a few times with a long sippy straw. *wink*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.

  • With my first MRI, the lady who was operating it had a very bad 'bedside manner'. I asked her what I had to do if I needed to move and she told me in no uncertain terms that I must not move. She said that if I did, she would have to start again, and that I MUST lie still and if she saw other problems, she would scan more of my spine. Her manner talking to me was horrible! I remember saying ok then, I will try not to move, and thinking to myself that she needed to work on her communication skills, especially since she must deal with anxious patients (I was one!)

    A different lady took me into the room where the tube was, and quietly spoke to me as she settled me in, giving me the panic button and told me not to worry what the other lady said. If I needed to move, just push the button and they would come and help me. It would be fine to start again if necessary. She was very reassuring.

    I think I should be ok this time. My back is not nearly as bad as it was before my fusion.

    I can imagine getting thirsty. It can get hot in there.

  • still in much pain , have to go drs looking so bad,cant fix hair,too painfull, eyes drooping down

    oh well, nothing i can do about it, last time i went couldnt even get dressed went in pj's

  • Jellyhall,

    Unfortunately, those kinds of people are out there!! The MRI this time had a cool breeze going through the tube - it was weird, but nice at the same time. Hopefully they will do your scan in segments like mine, and you can wiggle around as needed. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • So sorry you're not seeing improvement Flower. When my C5/6 was doing its nasty, I too could not pull my hair into a pony tail. To wash it I had to use one hand. Never had to go in PJ's though. C6/7 the arm was too weak.

    Do you have calls into the doctor, or better yet an appointment (soon) scheduled? I get the feeling that my surgeon has "special" holes in his schedule for the occasional emergency needs of a patient; other times it's a week or two to get in.

    *HUGZ* Hang in there woman, we are here for you.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • brenda they have done audits/investigations into the wait times, lots of stuff in the media about it

    its a huge political football
    really it comes down to big population and not enough facilities/drs and nurses


    you may not even have the contrast, if you do, let them no you need a break inbetween in advance, they could do another patient inbeteen, or you could scedule on 2 diff days

    like brenda said you will have an oppoetunity to move a bit between sections, just tell them

    and you can press the button to let u out if need

    they can work with you on this, but let them no your conceens

    im sure it will be fine really

    brenda, cool breezes and sips of water, im moving to florida , lol

  • Flower,

    We have plenty of hospitals that have ridiculous waiting times. Most of those are the same hospitals that will take everyone regardless of insurance status. Non profit mainly, the 'for profit' hospitals can turn people away (short of serious harm or life threatening) that don't have insurance. That helped stop some of those folks from using the ER as a clinic!!

    The center I usually get my MRI's at (positional) just keeps the room really cool, and lets you via blankets get comfy. I am still not thrilled just having the recumbent MRI, as I feel too much is missed with my spine not under load. The images are just as good if not better from my experience.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.

  • I think I will be fine. I have a lumbar and thoracic spine scan on 2nd June as a practice!

    flower, I have been thinking of you and hoping that your headache was improving. Doesn't sound like it is! I have had a headache the last 3 days and it doesn't improve until the afternoon. This morning woke up with a really pounding head - like a pulsing pain, with throbbing pain in both ears too. Luckily the pain meds made it not so bad. I can't imagine having it for as long as you have suffered flower. What did your doctor say?

    Wishing you all a better day. :-)

  • from end stage degeneration of my spine, ive mentioned before how it is in the advanced stage and has been for a few years

    now this, its constant, and i dont no how i can live like this, also the trigemieal nerve is involved as well as greater and lesser occipital

    dr says no surgery for this,too risky,they wont attempt it

    so painkillers,which dont do much and anti-inflammortoires

    as a last desperate effort going to physio, limited as to wat they can do to me as i have to be extremely carefull with the compression on the cord by the osteophytes, as you can imagine

    this head/neck pain is dramatically reducing my quality of life,i really cant do very much at all,cant get comfortable ;its constant with severe episodes lasting hours

    what i have is not common to get to this stage,so for anyone reading this dont freak out

    as ive said before thers no cure and its progessive and this is a complication

    thanks for your support brenda and jelly
    flower feeling very unhopefull

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