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Do you watch for signs?

Cath111CCath111 Posts: 3,702
edited 06/11/2012 - 8:49 AM in Chronic Pain
This post is for those that have already had surgery and aren't on the road to another one at this time, although you do or might have additional spine problems.

As you can see by my signature, I've had two surgeries, one lumbar and one cervical. My cervical is and has always been my biggest problem and an MRI and CT scan in July confirmed more problems above my fusion, at C2/3 and worst at C3/4. It also shows another osteophyte that's grown since surgery at C5/6 indenting the dural sac, but not a concern according to my surgeon as it's not close to the spinal cord. Luckily, my fusion and hardware are solid.

My question is this: Do you wince at some things that seem like signs things might be getting worse? For instance, I worry when I lose my balance unexpectedly for no reason (I don't fall, just kind of get a bit tippy and recover quickly), when I drop a plate in the kitchen without apparent reason or drop my brush when blowdrying my hair.

I think this is one of the things I hate most about being a spiney - that, at least for me, I'm always keeping watch if I drop something, get a little momentarily off-balance, or if I run into the wall turning the corner - I don't look at these things like non-spineys do. They're all just little things and are probably nonsymptomatic of my additional cervical problems, but it bugs me because those around me think I'm clumsy and to me it's always in my mind that it's a possibility it's more than that. Probably not, but it's something I'll probably always carry in the back of my mind.

So, I'm just curious - do you do the same thing? Do you wonder every time something happens out of the ordinary, even if it's just dropping a brush or losing your balance momentarily? Or do you even just stop everything for a moment and concentrate on your arms and/or legs to see if they're tingling, even a little?



  • Cath, I totally agree.

    I have only had a lumbar fusion, but am having other pains and symptoms from my thoracic problems and, although not diagnosed with cervical symptoms from my MRI yet, I have been told by my surgeon and at least 4 other doctors that my symptoms indicate that there are problems at various levels in my neck.

    I would definately say my lumbar fusion has been very successful, as the terrible sciatic pain in both legs and a lot of my lower back pain has gone.

    I do still have all sorts of pains, cramps, twitches, tingles and numbness in my toes, feet and legs that make me wonder what is going on. I have been told that they could come from my neck problems. (My physiotherapist also thinks that I may have a Morton's Neuroma.)

    In my hands, arms, shoulders and neck, I have pains, tingles, numbness and twitching. Also I get regular headaches, dizziness and occassional tingles and itching on my face and back of my head.

    Having ignored various symptoms from my spondylolisthesis for many years, and then finding out a couple of years ago that I had a back problem, and that it had caused very severe stenosis compressing my cord and nerve roots, I now wonder if the various things I experience are things getting worse at the other levels, and that they could be serious.

    I try to ignore them and just get on with my life! I know that my family think that my surgery has 'sorted out' my back problems, and are not keen to hear me mention other problems. I try not to talk about it, but when you keep feeling the symptoms and particularly pain, it is hard to not mention it. That is why I love coming here, and continue to do so. People understand and don't get fed up hearing about our problems. They 'get it'!

    Cath, I hope that you enjoy the run up to Christmas and that it distracts you from thinking about your various spine problems. That is what I am trying to do and don't want to think about my back until at least the New Year.

    I am even trying to keep up with the news, so that I have something else to talk about other than my back!!!

    HAPPY CHRISTMAS and a painless new Year.
    >:D< >:D< >:D<
  • You pose an excellent question. When I received my SCS, it was with the knowledge that there are unresolved issues in my neck. Today's technology just hasn't quite reached a point where it's worth the risk. So I decided that as long as I am able, I will press ahead with life as if there's nothing else wrong and deal with it if and when it ever becomes a show-stopper. I likened it to the billions of people who if given a spinal MRI, would have many issues that are non-symptomatic. They go along with life in a state of ignorance in regards to what dwells just beneath the surface of their skin. They enjoy life in their ignorance.

    I'm not saying I go around totally ignoring any symptoms, but I do my best to dismiss them or to defer them to another time in the future. I'm smart enough to know when something should not or can not be ignored, and in that case I would contact the doc and proceed from there. Until such time though, I refuse to walk on egg shells or set aside my life on the premise that I have a disaster waiting to happen.

    Hope that makes sense.


  • I like your illustration of people who have things wrong on an MRI scan, but aren't feeling symptoms. That is helpful to visualise while trying to dismiss symptoms.

    I assume that if there is anything that does need medical attention, it will get worse and scream louder at me, and then I will call for a doctor's appointment.

    I am waiting for the results of my MRI scan, and have an appointment with the neurosurgeon in March next year. I assume that unless he calls me in before then, that it is a good sign that there is nothing serious going on.

    Meanwhile, I am concentrating on my Christmas preparations. :D
    I must go and do some present wrapping.

  • This thought pops up in my mind because of what I read on this site. As for me, if a problem doesn't persist for a reasonable period of time, I right it off as part of aging. Should I cry wolf every time my back is a mess in the morning? Does the guy next door do that or write it off as sleeping wrong? Think about it, if you've been fused, you're flexibility is diminished, hence it's possible and likely to be achy and hurt in the morning. It's just not worth it to wonder about every little ache and pain I might have in life. I have enough problems to deal with on a daily basis.

    Oh, and no I do not stop to see if I'm tingling in my legs. They do their thing 24/7 already and it takes everything I got to try and ignore them. Concentrating on the problem is counterproductive.

  • dilaurodilauro ConnecticutPosts: 9,858
    In my younger days after my first couple of surgeries, I sort of played Russian Roulette. I did watch for signs of something brewing (ie Sharp pains down the leg), but when I was feeling fine, I would do things I should never had done (ie Lifting/Moving big rocks in the garden)

    Nowadays, when something crops up, and something almost always crops up, I wait a bit, dont get anxious. For me, if anything lasts more than 10 days without changes, then its something to look into.

    But, also realize, when it comes to my spine, I am at the point, that even IF something big happened, I would not go on for surgery. All my doctors agree with this, unless it was something very major and there were not any options.

    Maybe, its because of all the years in dealing with this, I tend to shrug things off. But that is just me.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Yes, Cathie, all the time I think: was that pain or spaz (or memory loss!! lol) due to my many spine problems? Is it getting worse? I don't obsess over it, wouldn't do me any good anyway, but it is there in the back of my mind.

    Lately my memory has really taken a turn for the worse. Its probaby a combination of my meds, the holidays, 2 kids, 3 dogs (1 is a foster) and whatever other excuse I can't come up with right now due to my horrible memory!!!

    Already I can find my mind wandering......

  • I wouldn't go thru yet another surgery anyway, nor is there one available that would help, so I just deal with it. Sometimes I whine to my doctor (not whine) but tell her new and fabulous things that are occuring, but other than that - it is what it is and it all sucks. I'm getting pretty negatory about it all once again and need a swift kick from ya'all... I just get so sick of it...
  • I'm pretty bad about this watching! My damage is all across my lower back and the left leg and foot are numb. So when I go off balance I ponder. Since I put most of my weight on my right side when the hip or knee feel like they are shredding with every step, I ponder. The use of the cane is helping some and they are getting ready to have me start using a crutch instead, this is supposed to help some. I guess because I'm so new into this life, a little less than 2 years, that I wonder if and how much worse this will get.

    Even though I watch I try hard to distract myself, to keep a smile on and not worry too much. I think the stress is just as damaging as what has happened to my back and my lifestyle. So I'm not sure that the watching and pondering will ever go away, but I'm trying hard to keep it under some form of control.

  • I don't necessarily "watch" for signs, but I do take notice when something happens out of the ordinary, especially if it continues to happen.

    I never stop and check to see if my arms and legs are tingly, actually, it's the times that they're not, or when there's little to no pain, that I notice. Then I do a little "spiney" jig (that would be a mental one) LOL. I had to laugh when you mentioned hitting the wall when turning the corner, I tend to hit the corners more often than not, and am usually covered in bruises from it. Just that little momentary lapse in equilibrium or something, it's weird.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • from me not because of my MRI (I've always known there are problems), it's just because I seem to be more clumsy lately. I've dropped a plate, almost tipped over turning on a lamp, stupid stuff like that. That's what makes me wonder. Then that got me to wonder about other spineys, and if and when they look for those signs we usually know so well.

    But like you all, I tend to blow it off too - I'll know when it's time, serious time, to see my surgeon for something other than a checkup.

    I also seem to be getting bad shooting spasms in my back lately, one that kept me in my recliner the entire next day. I think it's pretty far out from surgery to be having these shooting spasms, but I have medications when I need them and there's nothing I can do about it anyway.

    Kelly, you have a good point that when there ISN'T any pain is when I really notice.

    Anyway, it's nice to see how others deal with strange and changing body mechanics.

  • I'm a little hypersensitive. That's just the way I am and not likely to change after living with this for so long, but I have learned to relax knowing why I am the way that I am. It's kind of like the new nurse or Dr. who thinks that they have every disease that they are researching in the beginning of their medical training I think. OMG, I have that!!
  • Cathie,

    I am one that looks at signs and too pauses to see "is that a change, is something getting worse?" Because of the neuropathy I developed, I take notice if I see a muscle looks different (wasting), or notice a bit off balance but not light headed - are the protrusions growing?

    Dropping things, or weakness opening a bottle top. New sensations in my "good" arm - is the neck degrading more now? Yes Cathie, some of us do watch for signs.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Oh, I didn't mean my comment to sound rude..it's just because I have been dealing with this for sooo long, that I don't get as nervous as I once did, but I still "listen" to my body. I think it's a wise person to understand their bodies and know when something needs attention.. ;))
  • Robin, I don't think you sounded rude at all. I think that the amount of time we've been dealing with this stuff does have something to do with what and how much we're aware of with regards to what our bodies are doing.

    I'm just into my spiney issues 2.5 years, with one cervical and one lumbar surgery. So, I think I tend to be more aware of the little things with my arms because I don't want another cervical surgery, yet I know I have more problems there.

    I'm not so sensitive with anything attached to my lumbar, as I don't have any more issues that I know of and have really been getting steadily better since surgery.

    I'll just never forget how quickly my arm symptoms came on, developed and declined, as well as dropping things and running into walls, that I suppose I'm a little hypersensitive to it. By the time I got in to see my surgeon before my ACDF, after my surgeon looked at my films, he kept asking if I was sure I wasn't having bladder and bowel problems. That's how much I'd let symptoms go before I saw him, and looking back after that appointment, I'd realized I had been dropping things and running into walls, thinking I was just clumsy but now I tend to wonder.

    But back then I was so ignorant to all of this - so now maybe I'm in a hypersensitive state, like I said, because of both the past and the present.

    Brenda, are you in the Christmas spirit? Your "Yes Cathie, some of us do watch for signs," reminded me a lot of "Yes Virginia, there is a Santa Claus." LOL

    Thanks again for your feedback.
  • I also believe that forums like this and just the Internet in general can create an additional problem of an ala carte line of symptoms and problems. Information is important, Knowledge is power, but too much of a good thing can ruin a person's life. The best line I ever heard to describe this, is "paralysis through analysis".

  • Cathie,

    It's funny because I almost listed "Yes Virginia, if it's posted in the Sun, it is true" as a paradigm. I'm sort of in the mood - not today though, wrapping yesterday pretty well kept me in bed all day! Yeah, I never live and learn! (G)

    I've been dealing with neck or back pain since I crashed, but most of that until 2002 was in the "acute" box, as I was able to manage it pretty well. So been CP mode for about 8 years. The right arm is getting worse, and now since I've "possibly" reherniated twice now to the left, I am getting wasting in my left arm, and at times it (really the hand) feels odd for lack of a better term. The wasting is of concern as it is the radial, so that tells me *still* the vertebra is moving at the crack. Not freaking over it, as there isn't much I can do until I see my Neurologist. :)

    In closing, honestly part of me really doesn't want to know if things are getting worse. Odd huh...(G)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Cath,
    It is always difficult not to surmise that the things we feel and changes that we all experience are not here for the longer term, pain amplifies all changes even those disassociated with our pain or our condition itself, so all others things seem worse by association.

    The key is to keep these changes in perspective and worry on the long term is emotionally challenging it is difficult dealing with reality rather than letting our emotional state project us into potential, rather than real issues. This is a part of the management process and “catastophizing” at the start of our journey is a trait we need to manage more effectively.

    It we live too far into the future, we do not live for the now and adapting to our new everyday normal is not easy or simple. It may well be that our daily fragilities reminds us of simpler times when we could do these things without thinking or being “constantly aware” all the time.

    Although we have similar conditions our capability is very individual and those who have had surgery where it has failed, understandably see things from a differing viewpoint of experience. If we live a little life we have to see those aspects that are of our making, as well as sadness of the things we can no longer and perhaps will never do, we should not envisage our potential to do alternative things, I do try not to live down to the norms of disability only hold more tightly the things I still can do and how I have evaluated adapted and accepted.

    I too cannot remember how it feels not to have pain, C is right to say that information can sometimes focus just on the us, can we change all that things that happen, trying to change reality is not living in the real world, it is an ideal of how we would like things to be, nobody here want to be living this existence and being permanently sad a syndrome in itself if we let it.

    I watch for signs and symptoms of a flare up and the best remedy is not to increase that propensity for it to happen, so I pace well, try to do and think the right things and keep under the radar.

    URL Removed

    Take care and keep positive.



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  • :) Hi Cath, I have been reading about people who seem to have trouble with their balance including yourself. Unless I walk with a stick I feel sure that I would have a nasty fall. I also drop items out of my left hand which has developed a shake I cannot control. The joys of spinal surgery I guess. The injections I had on 10 December 2010 to L3/4/5 and S1 have to date had very little effect. I only hope they have reduced the swelling in the areas above. The ACDF operation I had on 18 September 2010 has taken away a lot of the neck pain but unfortunately I am getting shoulder pain again. By the way it is now 2 years since my PLIF + rebuild operation. Doesn't time fly. I hope that 2011 is more kind to us all.Looks like my hope to play golf again has gone out the window! Never mind I say just keep smiling.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    or loosing balance is worrisome to me. I do know that I have permanent nerve damage. And have researched all meds I take and their possible side effects. But sometimes I just chalk it up to getting older and nerve damage.
    The only thing that really bothers me is loosing my balance. And that is because I would tend to wonder that even though I've been on the same meds for years and don't abuse them. That maybe if others see me loosing my balance. They would probably be quick to assume that I'm abusing drugs. Or at least taking to much. When in fact I take less than prescribed. Maybe I just worry to much about what others might think. :?
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • There was one time my back pain got so bad, and I absolutely thought I was going to die!! It was almost more than I could handle. So I tried taking it easy, using ice, taking more breakthru meds, etc. I thought that if I continued for long, I would have to go to the doctor. However, once I passed the kidney stone, it all went back to the same old pain.........so you just never know!!!!!

    haha (the kidney stone had shown up on a follow up xray for my fusion, but the pain management doc didn't mention it until I told him about how bad the pain had been for several days between our monthly visits. He checked the xray, and told me that they had noticed a kidney stone in the left kidney. He did a follow up xray, and it was gone)

    So now, everytime I experience something strange, I wonder if it is from my back, or my meds, or if I have a strange new problem......It is enough to make a person crazy!! You never know if you need to have it checked out, of if it is something your PCP will just blame on your back problems or your back meds, or what will happen.
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