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Itsalongwalk - More Complications

AnonymousUserAAnonymousUser Posts: 49,670
edited 06/11/2012 - 8:28 AM in Back Surgery and Neck Surgery

I haven't posted for a while. I have been in a state of shock and denial.

My story in brief -
Unstable spondylolisthesis L5 on S1. Fused 2 years ago S1 and dynesys S1-L4. 16 weeks of bliss. :)
Then increasing pain on increasing mobility. This carried on to 12 months post op, delayed fusion and instability remained. So operation 2, fusion L5/L4 with BMP and fixed rods used.
This was very painful really from the off..I assumed it was the BMP and whole revision thing. I awoke with a numb right leg which no body took seriously so nor did I. I couldn't walk straight either, but again no-one was worried.
Pain continues and so did the symptoms in my right leg, until CT scan 6 months post fusion showed the BMP filled cage had slipped nearly 1cm into my spinal canal.
Well, at least now I knew I wasn't going mad and the pain was there for a reason.
6 months ago I had the cages at L5 removed. Severe nerve inflammation was reported.
Pain in back was controlled on 3 sets of pain meds for about 8 weeks and then slowly but surely returned. Pain is still cranking up, day by day.
Leg still numb, some weakness and pain in top of thighs (new)and pain in soles of feet (new)

So I go back and say "somethings wrong" have another scan that shows L5 pedicle screw has breached vertebra wall and is on nerves and that there is bone growth around the BMP cage placement in the spine canal. Almost a perfect square! but seriously, 2 bone spurs at 7mm and 5mm poking into my spinal canal and L5 nerve root.

So what to do??

Plan is that I attend pain clinic =)) and attend spinal injuries rehab. =)) Problem is, the more I move the worse this pain gets.
Oh and maybe remove the hardware in the future, but not now.
Doc thinks most of my problems are coming from the L5 nerve irritation from the slipped cage.

I am have now doubled all my opiate medication. Madness.
I am still in pain. I use heat but it is just not HOT enough.

I am actually worried that this bone spur thingy is going to keep growing and increase my pain!

I am actually really worried. I want to throw scolding water over my back to relive the pain and it scares me.
I jsut want to cry!!

Any input or thoughts would be appreciated as well as hugs!!



  • I am so sorry to hear that you pain is getting worse instead of better...unbeliveable! You have been so supportive to so many of us spineys, so now its our turn to encourage and support you. I don't know much about bone spurs, but perhaps as the nerve calms down, the pain will subside. I know that lots of people have bone spurs in their feet, but don't have any pain from them unless something else is going on (i.e., plantarfasisomething).

    Don't you dare give up or give in to this thing! Perhaps a period of lessened activity would give things a time to ease up.

    My prayers are with you...you were so helpful and supportive to me when I first discovered this site last June and I want you to know how much I appreciate you!

    Take care and let us know how things go for you, ok?
  • Your kind words are so appeciated.

    They are excessive bone growths poking into my spinal canal - where a disc herniation would be.

    You suggest resting - lol! If only you knew, I am more housebound now than I was pre-surgery number one!! (and that was not taking any pain meds!) I really don't do much before I flare my pain. It is really horrible.

    Never mind!


  • You are really having a terrible time, I feel for you! It will sure take some time for that nerve pain to go down. I sincerely hope that spinal rehab and the pain clinic will help you. But can that screw stay on the nerve without causing damage? How are you getting around, are you using a cane? I know how hard being housebound is, are you able to drive at all? I'm in recovery and just starting to get out a bit, I know it's tough. I know you are really worried and if you need to cry, you should do just that. I'll say a prayer for you.
    Faith M
  • Hi itsalongwalk,

    Poor you >:D< !!! and a big one too! (hug that is lol) I'm so sorry to hear that things are spiralling downwards for you. You've just got to hang in there... the thought... second opinion comes to mind! There certainly isn't an easy answer... stay the way you are and give PM clinic a go.... or pursue the possibility of another surgery to sort the spurs and screw... that poor L5 nerve is not getting any breaks!! In situations like this, sometimes you just have to go with your gut!! If your gut says avoid surgery, then do everything you can to avoid it; but if your gut says that surgery will improve your situation... then chase it! I was thinking too about when you said the pain was still cranking up day by day... some of that (as you probably know)may be linked to your perception of pain (as opposed to actual pain) given what you've been going through and for how long. If your perception of pain has been worn down + all the meds - then the PM clinic may be helpful. Haven't a clue if this last part applies to your situation... just thought i'd mention it. In the mean time... HANG IN THERE!! And come here for all the hugs you need :D

    >:D< >:D< >:D<
    L4-L5 fusion 1998; ACDF C4-6 2008; DDD
  • I agree after time percetions can get a bit wry, if that is the right way to say it.
    When I reflect on how bad is the pain really? My answer is this...
    About day 3 of my fusion surgery, just off the morphine pump, watching the clock for the meds, sore when you move but darn expect that at day 3 post op!
    Obviously I am not raw from surgery but deep sore yes and god knows all sorts of other pains / aches etc.

    Some i can cope with and sort of expect after everything. I beleive I am realistic on my longer term prognosis, never really gonna be rid of back troubles but to be almost house bound is crazy.

    I walk with a cane, I am very unsteady. I laugh itff but it isn't funny really. However, I could live with that. The ongoing pain in th eback is what really grinds me down.

    I can drive for 20-30 mins max then I feel myback really ache and pay for it 2-3 hours later.
    I can't do shopping crowds, trolleys, bags. All recipe for trouble later in day.
    I can sit for 20-30 minutes and again, feel the deep ache and pay later...really sore, deep aches, pains, buzzing, spasm etc in my lower central back. Pain awakens me at night. I am lucky to get 5 hours unbroken sleep.
    I need hot hot heat to help relieve the pain to get moving on top of all my meds.

    Keep moving, gentle steady is good, so that is what I do, pottering around, bit of this and that and not too much of anything!

    I think I am in focus. My guts say "help - something is wrong!" to be in so much pain is insane. But then so are these nerves once they have been irritated!

  • sitting here with permanent S1 nerve damage, I cannot figure out how you are going to get better in any regard with a screw sitting on your nerve. I think THE FIRST thing I would be doing right now is getting at least one other opinion. Just for peace of mind.

    I'm so sorry this is happening....Many gentle ( ( HUGS ) ) my friend,

  • This sounds so painful. I'm sorry this all went down and I hope the doctors fix you up and get you out of this terrible pain. Please keep us updated, take care
  • Itsalongwalk....

    From watching my husband live through 2 failed spine surgeries and wondering what is next, I know you are living through a nightmare. I hope that you find relief soon.

  • I am so sorry you are having such pain and complications. It has to be unbelievably frustrating, stressful and depressing. I know I often feel all of the above and I am not dealing with anything like what you are.

    Perhaps I should know this from reading your previous posts but I don't recall - have you gotten other opinions? Goodness knows, my knowledge level about all this is dismal but it does not sound sensible to me that the problems with the placement of the screw and cage are not significantly contributing to your pain.

    As for the pain clinic idea - I have never been to one but I have a friend who felt the one she attended helped a great deal. I know the pain clinic she attended was something like 8 hours a day every day for weeks. I believe she did this after her 2nd fusion and enabled her to be relatively active for several years until she finally had to have a 3rd fusion. So, maybe it would be helpful to you.

    My thoughts are with you.

  • Have you tried TENs or another massage machine. I also have my infrared platinum heating pad on whenever I sit so heat is comforting. I've had 4 epis and my leg pain is much better. I'm not sure it would help you though. I hope you're feeling better and wish you the best and review your meds and see if some nerve pain meds can help. Wishing you healing thoughts. Take care and wish you weren't having so much pain. 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
  • lol, =)) that I have been refused a trail of Lyrica!

    Thank you for your kind words.

    I have tried Tens, Accupuncture, Ultrasound (I like) heat - I use all the time problem is I can't get it hot enough. I wonder if that is because my actual back skin has altered sensation now due to the surgery. I read somewhere that the retractors that the surgeon use can cause damage to those muscles.

    I am seeking a second opionon - I have been patient with my treatment all the way through but do wonder how the cage was missed. Perhaps I was never really "heard" when I advised about my symptoms. Anyway, just want some consensus that the plan I have is logical and as Cherish says, leaving the offending screw won't cause me EVEN more problems.

    I do understand it is a risk / benefit gamble when they operate and intervene but I would like to know my choices.
    As it stands right now I feels completely stuffed.

    My symptoms are slowly getting worse, how bad are they supposed to get I wonder? Then what?

    Thanks for listening all. >:D<
  • It's good that you're getting a second opinion, and hopefully soon. If your symptom's are getting worse it's time to take action. If you wait too long you could end up with permanent nerve damage. Go with your gut especailly if it's screaming "help me"! Good luck.

    Faith M
  • >:D< I feel your frustration and can relate as well as far as staying home alot, unfortunately alot of us do I'm sure.

    I am so glad you're getting a second opinion, I think anytime there is a new onset of neurological symptoms it should be taken seriously. Period. You clearly had changes weeks after your 1st surgery and it was warranted. The next time you tell them about new changes and this time they listen sooner and there are again reasons for your symptoms. So like everyone said follow your gut...

    I'm not to sure what the rationale would be for rehab at this point w/bone spurs poking at your cord and a screw sitting on the nerve. The bone isn't going to fix itself I don't think and the screw? I guess it depends on how it's situated as far as what to do with it. Would rehab at this point make it worse? Which I think you already said most movements hurt let alone rehab?? Maybe either way if you're not already set up w/pain docs it might be good to get set up w/pain mgmt.

    My experience w/it has been I have still been able to have surgery w/another doc but long term have the pain mgmt help along the way. Going as a solution though?? I don't understand, did your doc tell you why he thinks rehab and pain mgmt is the solution right now while you have acute/new problems??

    You have helped so many of us and I hope you find some relief.
    Take Care lots of hugs your way >:D< >:D<
  • I'm sure that you feel like you're fighting an uphill battle with all that you have going on...try to stay positive and hopefully you'll find some form of relief soon
  • I've been thinking about you and just wanted to tell you that. I know it's a tough, tough battle you're fighting, but you're strong and will make it through this.

    Take care of yourself.

  • I know you mentioned not being able to get enough heat - and I don't know if this would be recommended, but I know that sometimes ice helps me more than heat.

    At one point I was doing too much ice; starving the muscles of blood supply so that they could not heal well.

    For now I alternate heat and stim, stretches, then ice afterwards. Although I can't imagine you being told to do any exercises when it hurts you SO much!

    Wishing you the very very best
  • I don't know what to say. Life is sure not fair. But please, hang on there. The idea of a second opinion sounds good, try to do some research, talk to people, and try to find the best surgeon you can.

    Please keep your Spiney friends informed.

    Thinking of you and wishing you the best,

  • I have found a good second opinion and one who is known to a professional friend of mine. I can't do names on here but needless to say, where I am located he is one of the best.
    I figured that I am beyond the usual scenarios now in post fusion care and need that expertise of a review.

    Regards managment, I agree...My guts don't think it is much of a plan really, pain managment and rehab. Lets face it, I stopped PT in Dec because it was aggirvating my pain.
    I am quite mobile,flexible, maybe too much, I don't know, but with movement comes pain.
    I also feel my back click (I know others do too) and have felt that some of my problems are positional, except I have no control on it...can't click it back out to be less painful.

    I am not sure if I have been given the run around or not. Hopefully the next doc will shed some light on the current plan. I am not in a hurry for more surgery at all but I do want to know what my prognosis is going to be. All seems a bit hit and miss. I also know that my case is now difficult and the risk / benefit ratio that the doctors consider comes into play but again, I think I should be referred to a more senior guy if I am beyond my own docs level of skill...

    ah well, what can you do. You trust these guys don't you but I live the pain, day in / out.

    Thanks again. Will keep you posted.
  • It seems like getting more opinions is the way to go. It's hard to ck. these guys out when you are in pain. I WAS able to google the list of Dr.'s getting kickbacks from Medtronic- can't say they are not great docs but I wouldn't want them working on me.I'm afraid they would use the product they got paid to push.I hope you find someone you can connect with who really listens and cares about your pain.
  • And I don't have any stellar advice (I certainly agree with the option of 2nd opinion) I do hope and pray you can find resolution and move forward. Sending warm & healing thoughts your way.
  • My GP is fully behind my reasons for wishing to seek another opinion.

    I need to wait a few weeks but Mid April shall cast another set of eyes over the problems.

    I just need some reassurance that they way I am going, or the place that I find myself in is in fact the right place to be.

    I do believe in tomorrow, and I thank you for your prayers.
    Let us all walk together!!
    I will keep you posted.
    Hugs my friends.
  • I'm glad you are getting another opinion. Most docs are fairly set in their ways...used to looking at things a certain way, etc. It doesn't sound like you're going to get anywhere with the doc that did your surgery. A new pair of eyes should be helpful. And if that doesn't work out, there are other specialists out there. It may take some legwork to find the right person, but there is help for you out there.

    I hope the first one will work out and you will be able to find some relief. You already have been more than patient!
  • Please keep in touch, let us know how your appt. goes in April. You just have to hang on for 5 weeks, I hope all goes well with your new Dr. And I hope you get some answers so you can feel better soon.
    Keep Hope,
    Faith M
  • That's what I did this time. I didn't bother with my first surgery because the doctor said "paralysis" and I said, "Fix It!" This time it's nerve pain and it's different. I have some time but I know the clock is ticking and I don't want this to become permanent. I would be most happy to hear that they are going to do something about your hardware. To be honest I was shocked at their response to it. PT????? None of us want to live on pain meds the rest of our lives. All we're asking for is to get some semblance of our lives back.
    I wish you all the best with your second opinion and hopefully a much better plan!
  • Yesterday I had a nerve block and epidural by my orginal surgeon who by all accounts is a lovely man.
    Apparently I found it all very uncomfortable and they were concerned t=regards my pain post procedure.

    Pain is all normal...bit sorer here and there as you'd expect for a few days...but hopefully will give me some releif.

    I have secured my second opinion and have to wait a few weeks. Just wat to see really if waiting on my current clinical picture will be the best long term outcome. After all it is me who feels the pain, no one else. And as someone said to me recently, I suffer my pain well, don't make much fuss and that goes against me...I am not communicating how awful I feel and so am left struggling.
    pOint taken.

    Problem is, when I have to live this pain, day and night I will not give in to it and so mentally I have my own war going on. I am scared if I give in and acknowldge the pain levels "really"...I am scared of that place because of the things that I think. I know this will make sense to some of you.
    So it is onwards...but I do need to learn to communicate better.

    Thank you for all your prayers.
  • I hope you are having some relief from the nerve blocks. Did you get your 2nd opinion? How did it go?

    Faith M
  • OK, update report and hopefully some positive thoughts for you you all.

    I had nerve blocks and epidul injection last month. I also sought a second opinion.

    Outcome - Well injections = I had five days of bliss. Defined as pain free periods after taking analgesia. wow!
    I also had several really horrible days (I refer to these as flare days, which I always seem to get after injections) and my gait has improved. My walk is unsteady and that goes from bad to really drunk (LOL!) but surprisingly this has calmed righ down.
    Pain now is bette than it was pre-injections but pain killers doses are slowly creeping up again. Not sure how long it will all last.

    Second opinion - He was worth every cent and minute. He carefully reviewed my case and I felt totally validated. He also explained how really unlucky I had been to suffer from these unusual complications and that normally pateints would loose their motor function worse than I have so I felt lucky. He also said wait and see is the best approach right now. I have had lots of interventions and it all needs time to settle.
    He explained that the fusion site where the BMP was has fused at front but not at the back of the vertebrae and that due to the removal of the spacers the spine was now not well aligned and was stressing, most likely cause of the pain. This all makes perfect sense.
    He said to sit tight for now and re-investigate if any big changes or in 6-9 months time if things fail to improve.

    This all made huge sense to me and gave me peace of mind. That was worth every cent and minute of my time. I wish I had done it sooner...and it was handled discreetly, something I was worried about!

    It helps so much to understand a cause for pain, or perhaps it is just me!!

  • I'm so sorry to hear of what you are going through. 6-9 months seems so long to wait in pain. I too have to wait 9 months to see if the bone growth stimulator is going to work. I just seems so far away when you are in so much pain. At times I want instant answers, instant pain releif etc but I know this is not practical in my position.
  • is only just around the next corner....!
  • It's good you had the 2nd opinion. I hope the nerve blocks and epidural have helped. I've had 5 injections in 14 months and I'm feeling better. I hope it's not just for a few days though. I wish you all the best and think of you at times and remember you in my prayers. 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
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