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What would you do? I really need advise!

sbarnettssbarnett Posts: 16
edited 06/11/2012 - 7:57 AM in Back Surgery and Neck Surgery
I had the ALIF PLIF surgery on 4 discs multilevel fusion. I am in more pain now than ever in my life. I thought I hurt before surgery but now is unbearable pain......

I had this surgery Oct 2010 and in March 2011 he removed the back side hardware, the screws had all came loose. I was still in pain! He has put me off since March, just saying come see me in 3 more months all through this year, wanting to maybe implant a stimulator in my back.....at this point I got a second opinion and the new Dr told me, the only time multilevel surgeries are done is if you have tumors or some disease and have no other option than surgery. This was not my case! yes, I hurt but now I cannot work or even socialize anymore!

New Dr told me now the hardware in the front of my back (through the stomach) have all come loose. He has done extensive research with fellow partners and half say yeah it can be fixed and half say no it can't be fixed, he is befuddled.

I have been given 3 options, go in the back and put new hardware in and forget about loose screws through my front side.....or redo both front and back, or do nothing.

What would you do?????
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Comments

  • Hi. You say tumor or disease of the spine was not the reason for your multi fusion?
    What was the reason then for the multi level fusion to begin with?

    What levels was fused? And why?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • hi sharon,
    So sorry first off for all your pain.
    I only had one level and I had same thing happen with screws. I am hearing more and more of this and it's very scary.
    I fused kinda fast and was fused before my doc removed my loose screws.
    Did your last surgeon even tell you if you were healing enough to remove them.
    It's for sure a huge decision and if it were me I would get another opinion as many as you can till your comfortable with a doctor and have a few saying all the same thing.
    Sounds like needs to be fixed but i'm not a doctor, and it's been only a year since your last surgery and and 7 months since the other removal.
    In my opinion your body has been thru so very much and needs time to heal. I would get another and another doctors opinion, another surgery could do so much more damage.
    As I stated i'm not a doctor.
    In my case I was fused before my surgeon went in and removed the hardware and I thought long before I let him go back in. For me I was in such pain just like 2 knives were in place of screws and that was what happened to me.

    It's so very scary how often this is happening to a lot of people were the hardware is faulty and I think it's time these surgeons find better hardware to use.
    I'm sorry to hear of all your suffering and I'm glad you found sh it's great forum of knowledge and support.
    I hope you find a good surgeon that can advise you as what can be done to fix this.
    Please Please think long and hard and do a lot of research before having another surgery
    tc
    keep us posted
    mary
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • no tumor or disease! It has only been my post sugery research that I have found this out, which my new Dr told me to begin with.

    I had L2345 S1 all fused.

    My new Dr seems very compassionate and he really wants to help me, he is very (befuddeled), for lack of a better word, he doesn't know what to do.

    Dr says my case is very complicated, and I feel like he will do anything in his power to help me.

    I think yes, another opinion should be in line, but I wonder now if others aren't in it for the money just like my original surgeon, (not my new one)!

    My new surgeon told me my old surgeon has a very very beautiful home! (sounds like he is in it for the money)(old Dr)

    Thank you so much for responding to my plea for help!
  • Hi Mary,

    The Dr told me my back should have been fused it had been 6 months, but it hadn't.(He didn't tell me that)

    My new Dr told me when I had first operation on the 12th through the stomach my records showed I was in line in my back. Then when they went through the back on the 14th records showed I was no longer lined up. (my spine that is)so just laying in hospital bed my surgery failed before the second part had even taken place.

    I don't know if this is all due to the Dr or my own fault. He told me though, (Old Dr) that he could fix me! No big deal the reason other Drs would not help me was because I had one more disc that needed surgery.

    I only wish I knew then what I know now! Hindsight is 20/20!!
  • Sorry that you are going thru so much pain.

    K now you didnt say were your doctors Neuro, or Ortho?
    I would do like mary said and get at least 2 more opinions. I f you have been seeing a neuro, then get 2nd and 3rd opinions from a ortho.

    Dont tell the doctor that it might be your fault, then they have an easy cop-out.
    Another thing is who is paying the bills?
    As you will need to consider that when making your decisions.

    We got a chicago connection going here,
    Keep us informed on your progress.

    My best to ya.
  • I am sorry but i still did not understand what was the reason for your 1 st surgery on all those levels'. ? What was the condition of those levels?


    Also the other dr has a nice house, So its probably all about the money for the other dr?

    You show me 1 dr that dont have a nice house! Especialy a specialist who does surgery, They all make good money in there line of work, So that realy dont say nothing about how good they are or is not a reason that for them its all about the money,

    I would be more worried if he dont have a nice house and he is living in a trailer down by the river, Because that would mean he gambling his money away and drinking it away and would do surgery when not needed just to suport his bad habit,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • You are right I was trying to tell a long story in just a couple paragraphs.

    The pain in my back started in 2000. I had been a hairdresser for 35 years and standing on my feet all those years had taken a toll on my back, It was getting worse and worse with every year passing. Finally I went to 2 different Drs in 2007 that said they could do nothing for me, I didn't really understand why at the time, if they told me I didn't comprehend what they meant.

    2010, my friend found this Dr that had an MRI machine that took pictures of your back in an upright position, I thought wow, maybe this new machine could zero in on my problem. I thought this machine would show what other MRI could not.

    That is when the Neurosurgeon (old Dr) said oh, I know now why other Drs refused to help you, you have one more disc that needs to be replaced, its no big deal it is only one more disc. (talk about feeling stupid right now)......(me)!!

    I did not do my homework, I took him for his word! I had no idea how extensive my surgery would be! I could not walk without a walker for 3 months, and had excruciating pain whenever I did.

    Then in March 2011 old Dr decided the screws were loose in my back and he would take them out. Still no relief, that brings me to today, NEW Dr, another opinion (Neurosurgeon). It is now that I have discovered this old Dr never ever should have done the surgery he did on me.

    My new Dr is researching what or if he can help me at all. He has contacted many other specialist and that is why I consider him a wonderful Dr. He also told me that the old Dr never had MRI or other tests read by a radiologist, which is usually never done.
    He said Drs should always have another eye read tests if nothing else as a backup.

    Have I clarified any of this, I am so sorry I am not good with medical terms again, I feel so stupid!

    Thanks to all for commenting! I am really torn!



  • My insurance is picking up the bill, I have met my out of pocket 2400 dollars so if I am going to have anything else done, it won't cost me anything if it is done before the end of this year.

    This makes it hard to make a decision (the time frame) I am still paying on the out of pocket for this year, if I wait til next year It will start all over again with meeting the out of pocket...2,400.00.

    My old Dr charges me 50.00 a pop everytime I need my records sent to someone (social security, disability insurance and etc.). Insurance will not pay that charge. Also, I have to hound old Drs office to get my records to others, at one point my insurance got canceled because they did not get my records to short term long term disability in a timely manner, but just a week later I received a 41,000 dollars bill from his office. It didn't take anytime for them to bill me when my insurance was canceled!!

    I have since got that all straighted out and they did go back and pay original charges to Dr. That also brings up another red flag, why won't they turn loose my records?!?!

    Currently (I have applied for SSD) they just sent me a letter that they have not received my records from old Dr, I have to call and hound them again!!

    Sorry, I have rambled on again!
  • I'm worried here for you because my L1-S1 are all showing multiple tears and degeneration to the point that a discogram about killed me at every level except L3-4 and they werent sure why that one didnt because it was just as "blown out" as the others. Dr decided to only fuse L5-S1 because he felt that fusing more than one level would just transfer the stress to the surrounding levels sooner. He said "I will do one and it may help or may not, but whatever it does, you'll be back within a year begging me to do more levels and it will begin a series of failed surgeries which will take a mental toll on you that is more harm than good" "do no harm is our oath".
    FF to today and I didnt get my year off from the crippling pain! I'm still hoping for recovery.
    I hate that you didnt have an honest opinion as it sounds like the majority of dr's wouldnt have done all L levels fusion without a very good reason.
  • Thank you so much for your reply......yeah, I kinda figured out it was my stupidity for not doing more research.....thats what I get for trusting a Dr.

    I was just so thrilled to hear someone say " Oh, yeah, I can fix that, no problem" It was music to my ears after years of suffering (no comparison to now though)He said I would eventually wind up in a wheelchair if I didn't have it done, well, I am on my way to a wheelchair now, for sure!

    I am so sorry for you as well, sounds like we are in the same boat! Difference is you did your research first.

    I turned 61 in May I thought thats OK cause 60 is the new 40, right? LOL I feel like I have just graduated to 80 now.

    Do you have any future plans concerning your back or are you just going to learn to live with it?

    I don't know what to do!!!!
  • Look up this members user name - Aviatrix36440 (real name Brenda). I am almost sure she had 2 surgeries like your new Dr is talking about for you. I know she had 2 surgeries - 1 day apart but not sure if it is the same issue as you are facing.

    She is very informative and is a kind person. If you post to her she may take a few days or so to respond as she just got home a few days ago from having her 2 surgeries.

    If not her that can help you - keep asking around. Someone here I am sure can help you out :)

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Well, I am 52 and I hope to not end up in a wheelchair but it beats the alternative of pushing up daisies!
    I am just along for the ride at the moment. I truly believe that everything happens for a reason and my higher power must have a clue. I see so many stories on here of people having somewhat successful multiple level fusions that I think there must be something out there to help. Of course, we see more of the disasters than the successes here because people generally would rather bitch than praise!
    I see the doc on the 4th to discuss the progress and on the 10th for 6 week post op visit.
    I'll keep you posted to progress.

    At the moment I just went back to work this past monday and I have some issues in my charlotte office which have and will require a lot of visits. I will be driving and staying in hotels for the remainder of the month in different cities too. It is difficult but I just stop every 30 minutes and walk around for a few. The right foot and leg make driving a bit of a pain but I'm pretty good at left foot driving too. I figure if I get nabbed for for my speeding tendency I can always tell him I was trying to stomp out the fire in my foot :)
    A little levity with the constant pain helps.....
  • Thank you so much....I have read many posts she has made here, (Avitrix36440)she certainly does sound like a kind caring person and also has experienced back pain as well as the rest of us.

    I will see if I can contact her....Thank you again.
  • LOL that is too cute! Keep up the humor it will take you a lot farther!

    I know what you mean about the burning, numbing, going dead foot syndrome, makes it very difficult to drive. I too have had to learn to use left foot. Thank goodness I have my husband to do most of driving.

    How on earth could you return to work?!?! Bless your heart, I assume your doing what ya gotta do.

    I have been considering doing some volunteer work, I really need something to do besides sit around and groan, but I am afraid no one will want to be around me......I was laid off during my recouperation, back in March....I figured they just didn't want to wait on me any longer.

    Please do keep us updated on your situation, also, I may steal your stomping out the fire in your foot excuse my self...LOL
  • I have made a decision to go forward with corrective surgery.

    My surgeon has confirmed with others that it is too risky to go in the front again to remove loose screws, so he is gonna go in through the back and try to correct me from the back. He is reasonably sure he will make me at least 25% better. At this point I will take any thing I can get, with colder weather setting in I am really hurting dull ache just sitting is almost more than I can bear.

    November 21 cannot come to quick for me. Although I really dread going through post operative pain all over again. 3rd times a charm though! (I hope)

    Doc also said they will need to keep eye on the loose screws in the front for years to come because the loose screws could corrode into my intestines or other organs making it a necessary risk at that point to go into the front to remove screws.
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