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too much damage

flowerfflower Posts: 460
edited 06/11/2012 - 8:51 AM in Back Surgery and Neck Surgery
too many levels

can go in there and try to clean up the mess , cervical and lumbar

but that doesnt stop the deteriotion

im devastated , i have times when im in denial, then other times i no my spine is crumbling away

picked up MRI results, cord is flattened, with just trace of CSF

rang my GP, he is away for a week, my app with NS took 6 mnths to get, i go i think mid april

just update where im at



  • They can do really amazing things these days. Keep your chin up until you see your NS. I wish you the best.
  • for your kind words woodyman, but its progessive , there is no cure

  • my sympathies go out to you.

    I know that is devasting news, but keep your chin up, and see what the NS has to say.
    Keep us posted, as we are all hoping for the best for ya.
  • i picked up the scans yesterday and it just makes it so real again , plus the further damage, think im in shock

    i was too upset to post last nite , ive had a sleep and now im still in shock

  • Sorry to hear about your getting the test results back and things are worse. I hope your Surgeon's appointment is at the beginning of April or I would call them and and let them know your condition has worsened. If you're having more pain or a change in your condition you should be seen by a Dr. while yours is away. I'm praying you can get through this. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • when i need to see my GP, hes allways on a break, he takes them regularly every few weeks, ive left a message with miss reception at my NS for him to call me

    she said hes busy, he is busy i no that, so hopefully he will ring back, told her how worried i am and if he could discuss my MRI, which will also bring it to his attention as it may be sitting in his in tray

    my NS app is 4 weeks away, ive made app with my GP for when he gets back

    im freaking out here, would really like to talk to NS,
    i mean how/what can i be functioing when the CSF is only a thin trace

    this would probably now make sense as to why im having the headaches and pain on coughing in the head and staggering/falling sideways

    really need some reassurance as to what this means

    thanks charry for your support, really need it at the mo


  • Flower,

    While I know your scared and it is hard to deal with. But, if your cord is in jeopardy with the scans being that bad, possibly you should consider going to the ER. There are a few of us floating around with cord damage. While yes it bites, we do get better. In my case the results are living with myelopathy. But Neck of steel has some pretty severe cord damage and maybe she could give you some insights. Sometimes you can have pressure on the cord and no damage is done. Once they do surgery and release the pressure the damage stops. I am not sure at what level you have issues at, but it does matter. But if your cord is that bad then I would seek immediate help, as the spinal cord is a emergency. Keep in mind the dura that surrounds the cord is very very strong. So while your cord may have pressure on it, the cord itself could be protected. Let us know how it goes.
  • ive rung back my GP and getting fitted in with another GP in a couple hrs.

    OA at C1_ C2, advanced degeneration down to T1, worse from C3-C4, C4-C5, C5-C6, C6-C7

    Large osteophytes complexes on those 4 levels have been digging into my cord for at least 2 yrs (last scan, prior to this one)

    mutilevel canal stenosis for years,mutilevel several lateral nerve root impingments bilaterally impinging nerve roots, for years,mutilevel bilateral foraminal narrowing,, mutilevel exit foraminal narrowing bilaterally with osteophytes compressing nerve roots bilaterally , scelerosis of articular margins and facet joints multi level, narrowing of all disc spaces, altered marrow changes, straitenening of lordosis, only thin trace of CSF anterior and posteror @ with cord flattening @ 4-5 and 5-6
    also probs at T1

    then sever probs at mutilevel lumbar and SJ, also thoracic T5-T6 paracentral discovertrebal bar indents thecal sac( thoracic scan old, so there be more detwrioation now)

    what i ment before was i have advanced degengerative disease , early aquired in mid teens, even with surgey to fix this mess , its progressive degeneration
    very symtomatic , quality of life very dimished now

    tam i appreciate your input and help , off to drs soon , will see what he says

  • to the GP with scans, receptionist said dr was doing clinic , so i explained how i had rung b4 and was told to come down and he see me , well in the end i left my scans and asked the receptionist to ask the dr to look them over and phone me

    well he didnt , the receptioist just called to let me no i dont have a tumour and to see my GP when he gets back

    really !!!! of course i dont have a tumour

    moral of the story........ you really need expert spinal specialist...... so hopefully my NS will ring tommorow

    flower (waiting, waiting for some answers)
  • Ms. Flower,

    Sorry for your "not good" changing report. I went through similar with my EMG studies - "progressive, prognosis, poor." Yeah, that made for a great day, NOT. Please try to wait until your doctor puts the full interpretation before you get totally bummed. I know, it is hard (been there, done that), but you can't change what is going on, so try and "de-stress" until you truly know what is going on. Okay? More *HUGZ* for you woman!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • If this falling sideways or headaches get worse you should go to the ER where that Neurosurgeon works but if you're stable I hope the Neurosurgeon calls you back. I'm sorry your back is in rough shape and if symptoms are worse I would get help. I'm sorry you're going through this. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • i took a chill pill :) but its wearing off now

    brenda the hard thing to cope with is the damage allready done and the progressive deterioation, its allready advanced in most of my spine, as it started when i was very young

    i knew the MRI would be more damage , but i didnt expect the blockage of the CSF

    yes i need to try wait it out the 4 weeks to see NS, its just ya no....

    brenda thanks for the support n hugs

    charry, yeah the staggering/falling sideways , if it gets worse , well cant go to NS ER coz its too far away, so ill ring NS again if he doesnt ring me and also tell him about the headaches and cough headache/pain
    Can you beleive it , "you dont have a tumour"

    no i just have an large osteophyte complex"s flattening my cord and obstructing the CSF

    for goodness sake

    thanks charry for your advice and support
  • Ms. Flower,

    The hard part is the "waiting" for what is going on. Looking over a report is NOT the final. You really have to wait (stinks I know) to see what the spine specialist has to say. Okay? I've been bumped by my Neurologist, and NO it did not sit well, but "patience is a virtue" sadly...

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • well yes need surgery, otherwise it will progress to quadraplegia

    i have COPD, so that is a problem as me being a risk with general anasthesia, he said ive have to sign a death wavier or decide which way i wanted to go

    he sending me off for chest x ray of lungs and a spiromitry, to see how MY COPD has progressed to give an idea re the aneasthesia

    i have 2 1/2 weeks now to go to see NS

    What would you do? risk the surgery or no the other will happen
  • Flower,

    I would take the tests first to see *if* the level of COPD is in fact an issue. I always get a copy of my GP's exam notes, and she put that I had it, but never told *me* that! And too, none of the Anesthesiologists have had issue either. After you know what the status is, a decision for surgery or not really can't be made fairly.

    I know that if I had to sign a death waiver, I would be beyond creeped out! "Death risk" (all surgeries have that), or quadriplegic - tough one. Not sure if I could deal with being a quadriplegic, not sure.

    Hopefully the chest x-rays, breathing evaluations and such go in your favor. Please let us know. Oh, and a GP is telling you that you will become quadriplegic, or a spine specialist is telling you that? Sorry, I love my GP, but she is not skilled in the spine...

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • creeps me out too, thats for sure, brenda, but thats the reality, some surgeons wont operate if they consider the risks too high re death

    my GP said that it would happen as it would progress...

    will be good to speak with NS and get his input, i await anxiously

    and also for the results of lung function tests, i was diagnosed with moderate COPD 3 years ago


  • Flower,

    So I am gathering that this death waiver is in addition to what we normally sign for surgical risks before we go under?

    I think the reason my GP put COPD in my record is since I smoke, BCBS has certain things that have to be in my records, and certain steps completed before they allow most of the cessation medications like Chantix. My lungs are clear, so dunno. Sorry you've been diagnosed with it. Still, I will keep my fingers crossed that your respiratory pre op testing is okay.

    Nodding with you. I would wait and see what the actual surgeon has to say. As for the more likely doctor to turn you down, I would vote on the Anesthesiologist, as he is the one that has to keep you under, *and* breathing. I get a feeling that position carries a higher stake in the 'yes/no' acceptance decision.

    On my last surgery the Anesthesiologist was totally pissed that my GP didn't have me go for lung function testing. He wasn't a pleasant man to begin with, so I blew his attitude off! (G) He saw my last 4 surgeries a year prior "Brenda tolerated the anesthesia well" in the surgical remarks. His closing remarks to me (IV hooked up and all) "Oh, the hell with it, we don't have time. Lets get her ready for the OR." And with that he stomped off in a huff. My NS wasn't thrilled with that attitude either...sigh.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You poor thing!
    I sat on my mri report which I interpreted as bad and had to wait a month for NS to review film and for me his interpretation was worse then radiologist so I know what you are going through.
    My GP who is a DO read the report in front of me & said do nothing! Just stretch, yeah right like that will help a spinal cord injury!

    I know its hard but you need to keep pressing NS for an appointment ASAP! call every morning & late afternoon to see if there is a cancellation. You need the expert to review your films!
    4 more weeks is too long!
    I'm so sorry this is happening to you! NOT FAIR! I know. I get it. Someone mentioned ER, you may want to seriously contemplate that option.
    I have been stumbling too, like leaning to the left, which i have been blaming my leg weakness on my sciatica. .... that may not be the case. I'm getting headaches too deep tension into scalp and radiating into my shoulders hot tight pain, the oxy wont even touch it.
    I feel so bad for you and want to wish you the best possible outcome but you NEED to be seen by a NS. Like Tamtam said cord injury is serious and I'm getting a crash course presently.
    Flower to you have a pain mgmt doc? Mine had been a godsend after seeing NS Friday afternoon, I called him today and he scheduled me for epidural tomorrow actually I guess today, seeing its Tuesday already. The waiting game stinks like Brenda said. I know my epidural wont fix my cord injury but perhaps it will stop inflammation while I get myself prepared for what lies ahead.
    maybe the PA can see you at NS office or maybe NS could at least review your films, does he have cd or prints? If not have radiologist send them or perhaps you can drop them off. He needs to know how serious your situation has become. You need to make sure of this.
    I will pray for you and I hope your pulmonary work up comes up in good standing so you can proceed with correcting your issues.

    Try and stay positive and keep your pain under control. I know its extremely hard to remain focused & positive in this situation but you have to try! Don't let depression take over, you hear me. When it creeps up on me i cry it out and then count my blessings. You need to do this too. As bad as you are there are so many others dealing with so much devastation so pray and give thanks and ask God to place his healing hand on you, from your head to toe.

    Please keep us updated! If you have to go to ER you go!

  • death wavier from what my GP was saying , is an extra thing, sorta saying that i no there are extra risks than just the surgery, due to my COPD and the anasthesia

    so i would be absolving them of any responsibility, as i would be agreeing to a surgery against the anathesiaolgists jugdement of it reasonably safe

    however, i havnt done or got the lung results yet, i have for a few years take a daily inhaler for my COPD

    yes, it would be the anasthesiologist who would make the call on it
    thanks for your well wishes on my lung function tests

    ive waited 6 months for NS app, now its down to 2 1/2 weeks to go, but still it cant come soom enough

    if things take a drastic turn beforehand, ill call an ambulance, trouble is they will take me to local hospital, where they do not have NS

    no i dont have PM dr , my GP sees to my pain meds etc, he said today there was no point in doing an injection

    thankyou for your kind thoughts and words , i hope your ESI helps reduce the inflammation, we no it wont fix the prob , but it can actually do some good, reduce the irritation

    "just stretch" oh dear, i no what u mean, sometimes the things that are said, oh my
    makes you wanna scream
    take care yourself
  • Flower,

    This waiver is interesting to say the least. Nope, wouldn't thrill me, but as we know, we have to weigh our odds on *any* surgery that puts us under regardless. Even though I could never be in their shoes, I guess in retrospect, I can understand them having a waiver like this.

    I sort of understand part of your frustration in that my Neurologist (been spot on with my issues over the years)...to get an appointment was over 4 months. Okay I decide I want to stay with his expertise, but what happens the day before my appointment? I get canceled and bumped another month - to April 1st of all days! If I get bumped again this week, good or not, I will seek a new Neurologist, as to me 5+ months is ridiculous!!

    I know it's hard, but try and stay as positive as you can. There still is light at the end of the proverbial tunnel as they say! Please don't give up woman!!! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I don't know if this will help you but here goes. I too have a chronic condition just as you have. My spine will continue to degenerate and get worse as time goes by. Do not give up! there is still help and hope for your condition. My spinal cord in my neck and lower back was being smashed just as you suggested that yours is, after my GP looked at my MRI I was scheduled for my fourth back and neck surgery one week later. My spinal cord in my neck looked like it was being pinched in half and I had bone spurs sticking out all over the place. I too have severe spinal stenosis, DDD, Facet disease, Arachnoiditis, and all of the other good stuff that goes along with it. The surgeon did a laminectomy which allows for more room for you spinal cord, removed the disc, removed all of the bone spurs, placed a cadaver bone in place of the disc and then installed a titanium plate and four screws for stability. I do feel a lot better than I did but I still have a lot of pain and discomfort in my right arm. My last fusion was done on 12-29-2011. I have had my C4-C5-C6-C7 and L3-L4-L5-S1 fused already and due to the chronic condition I now have disc herniation's at C7-T1 and L2-L3 and will have to have more surgeries in the near future. I know your condition is chronic just as mine is and there are still many options out there for you in the future to help you with your pain and suffering. My Doctors sent me back to work last week and I am not fairing very well with it yet, I will take one day at a time and try to work through all of my problems and make the very best of my situation that I can. I will be praying for you and I wish the very best outcome that you can have in your situation. Please let me know how you are doing with your future appointments.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    One of my cervical disks C3-C4 (above all my hardware) has an area of severe stenosis that is (like you) completely showing no signs of CSF being present on the anterior and posterior aspect of the MRI.(looks like its being pinched from the front and the back) My neuro said that that is bad BUT there is still the ability for CSF to flow via the laterial (sides) of the canal.

    Just wanted to mention that and maybe let you know that yes the situation is not good ... That the fluid is not hopefully fully restricted from flowing entirely.

    My thoughts and prayers are with you,

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • thanks for sharing your spine issues and kind thoughts, it does help
    i feel for you having to work with your spinal probs, doesnt sound like a good situation to be in

    all this deterioation is scary stuff, along with lots of multi level fusions

    again thanks for your kind words and i do hope your situation with work somehow resolves

  • thanks for your post , that makes me feel a bit better about the lateral flow, still trying to come to terms with this

    but the lateral flow is hopefull

    thanks for your kind thoughts and prayers and im sorry your having further probs too above your allready fused cervical, sucks big time


    oh want to ask you, do you get severe headaches , not like any other headache, and i also get instant severe head pain when i cough, have you experienced that, and also when you move your head/neck , like looking down , can feel severe pain like pressure
  • Hi, and i wish i had words of wisdom for you, but i dont.

    Just wanna let you know i'm thinking about ya, and wishing you the very best of luck.
    Stay optimistic, and try your best not to let this get you down.
    Tho i know it's easier said then done.

    My best to you.
  • Just wanna say hi and see how are you doing???
    I'm thinking of you :-)

  • Unfortunately I don't have any words of wisdom for you either because I haven't been through what you're going through.

    I heard back from my friend, whose father had the 5 or 6 level fusion, and she didn't really say any more except that he was recovering and now able to work in his orchard for an hour each day and look after his wife who's frail. She said her father was tough but was still on painkillers, and probably would be for quite a while. His surgery was in September last year.

    Sending you >:D< >:D< >:D<


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • thanks blazer for your kind words and thinking of me

    virginia, still got another 10 days to see the NS, and go the respiority unit at the hospital for lung function testing
    this is certainaly on my mind a lot, trying not to dwell on it , but its hard to get it out of my mind...
    thanks for thinking of me
    i still feel the same as my initial thoughts on the matter and that one of the options isnt for me

    trish, thanks for the hugs
    your friends father sounds like hes doing reasonably ok, but unfortunatly still on painkillers, thanks for letting me no

    hugs to to all
  • thanks for your advice, much appreciated

    ive been having a meltdown today/tonite, reality of all this and i was getting really scared and freaked

    was doing some research and i have a SCI, which i guess ive allready stated before

    anyway looking at the research makes me feel extremly vunerable, more so than i have been prior, even knowing my cervical in serious condtion

    think im rambling now, just very worried, and anxios to speak with NS, my head hurts nearly all the time an i have bad nausea , i really hate nausea

    caution is right, if i hyperextend my neck or have a little fall, that could prove disaster, and time just itself, with the damage its allready doing

    GP"s dont no enough about spine, really need to talk with NS, appoitment getting closer, wish it was tommorow
    anyway thankyou metalneck for your kind and thoughtfull words
    oh yeah , i have had migraines since i was in my late teens, but thses headaches are nothing like a migraine and it hurts my head so much when i cough , its scary
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    To answer your headache question ... No ... fortunately I don't get heeadaches (just about every other ache possible) but not headaches. I used to get migraine but the seemed to have stopped .... about the same time I stopped drinking alcohol of any kind.

    Hopeing for the best for you! Keep us posted and am glad that we maybe have helped in some form or fashion.

    Again, please keep in mind that we are not doctors and anything we may say or possibly suggest should ALWAYS be confirmed with your treating physicians before starting, stopping, or putting much credit into our responses. At best we share our experience that maybe similar to yours - or not.

    Take care and caution,

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

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