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Has anyone else who has had a spinal fusion had this kind of problem so late after the fusion.

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Comments

  • Sorry to hear of your problems...but as the saying goes we all have something. 5 years after my first L5-S1 laminotomy when I went back to another surgeon who did a full body x-ray he asked what's that thing in your back...my husband and I looked at him like he was crazy but he wasn't. No wonder I suffered from severe back spasams for those 5 years. It turns out that when a nurse removed the drain tube from my back it broke and for 5 years I've had a 4 inch piece of tubing along side my spine that affected the muscles along my spine causing unbelievable muscle spasms that no one found until this x-ray. When I had another L3-L4 laminotomy in 2003 the Dr. said that the tube was so imbedded in scar tissue that it would be major surgery to remove it, so he didn't. I now have severe DDD and scoliosis and have to have PLIF from L2 to L5 in a few weeks as its becomming impossible to survive this way. I haven't told my husband but its now affecting my breathing so the surgery must be done. I'm afraid of how all of this will affect my mobility but am hoping that since all of the work is being done below my waist, it won't be too bad.

    My biggest problem is that I'll have to fly home one week after surgery with a brace on for 7-8 hours. How do I survive this? The Dr. said that with pain meds I'll be fine (really?) Any one have any ideas?

    I hope and pray that all of you who have your surgeries this month have an easy time of it with fast and full recovery.

    I'll keep reading nad posting as I get closer to surgery. Marsha

    BTW, my surgeon was with Cleveland Clinic for many years and I feel that he really will take good care of me.
  • Thanks Dave. I will keep all of that in mind. Honest I don't want more surgery and will avoid it if at all possible. (With the exception of this hardware.) I would be running for the table to have that removed. I have said for a long time. It Hurts! I can't get anyone to believe me. If It's not on fire it feels like someone is taking a knife and slicing me wide open or repeatedly stabbing. Just like you said ernurse.

    I know I have nerve pains and other issues but to be rid of what I have grown to blame on the hardware??????? Ahhhh...That would be like getting rid of my alien probe! LOL!

    I am thrilled to be getting the referral to Cleveland Clinic. "Yeah!" Is right Ernurse. I couldn't have said it better myself.

    Kylie, you are right. My doctor has really stuck by me. He continues to work on the perfect pain management and PT etc. but is still sending me off for this referral. I am sure many doctors would have given up by now.

    Thank you all. I'll be in touch.
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  • I haven't been in touch. I've been pouting! There is really not much to report.

    My referral didn't work out as well as I would have liked. Not from my lack of trying. I went with my hopes up high. I believe Forum rules strickly forbid us from discussing specifics, so let's just say it didn't work out.

    I am going in for another EMG Monday. I have requested an appointment with an Orthepedic Surgeon who works by Physician referral only. He's supposedly the best of the best. We shall see....

    Trying to keep the faith here and not give up. I'm hating the pain.

    Katmouse64. It's been awhile. How are you? What's going on? Catch me up if you can.
  • Sorry to hear it didn't go so well. I haven't been on here for a while either except the occasional comment.
    I too have been struggling and the term pouting seems to fit well.
    Now I hope this ortho can shed some light for you.
    Is the pain/numbness etc getting worse or is it the same?
    I just re-read your posts for a refresher and from your first post you said the hip surgeon thought the problem was from the level below the fusion correct? And an MRI showed a small bulge at that level yes?
    I'm thinking a discogram to check for annular tears at that level might just be warranted.
    I had a bulge at L5/S1 but no impingement etc, it wasn't until the discogram showed multiple annular tears that I was taken seriously and had a fusion.
    In any event a discogram wouldn't hurt (well ok it will hurt in the real sense but not in the bigger picture sense).
    Hang in there, i'm struggling to get help too and I know it sucks.
    Are you still seeing your original doctor, the nice one?
    Kylie
  • This is a little bit off topic, but Frog, I know you will appreciate it. I saw my neurologist on Friday morning. I had printed out a short radiology report from 2006 from a brain scan. The first line said "Atrophy, as above. This is greater than expected for patient's age."

    Well, there was nothing "above," so I figured if it was something important, the doctor would call me. He never did and I eventually forgot about it as my back problems overtook my headaches.

    But yesterday after we finished talking about the problems that brought me in again, I pulled the sheet out of my pocket and asked him about it. He couldn't find much of interest in his office notes, so he said we'd go look at the films. We went out in the hall where the light box was located, and he spent a great deal of time looking over 9 large sheets of film. He kept coming back to one and finally pointed out what he'd been studying. He rather quizzically said to himself "Hmmm, wonder what I was smoking that day...." Looking at the images in 2010 he found NOTHING of significance and could not figure out why he had written what he had in the report!

    I am going to repeat the brain MRI next week...as I said to him, just because it's been at least a month since I've had a MRI and the staff might be missing me.

    Anyway, when we have these types of experiences, it makes us realize that what a doctor sees one day, is not necessarily what he is going to find important again...and vice versa.
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  • Tell me about it Gwennie! It seems we are subject to their poor moods, prejudices, or, like he said, what ever they were smoking that day.

    I've lost count how many times I have had this type of experience.

    Good Luck! I am avoiding that MRI machine! I have been having big time neck problems. The nerve is definitely being pinched in someway. I know nerve pain. My left arm is a mess. We're working on it in PT. Hopefully I can get relief that way. My goal is to avoid that machine.

    Kylie,
    So sorry you are struggling. It's sometimes fun to pout though isn't it? You get caught up in a rut and then you talk yourself out of it for a while and then find yourself right back in it. It's definitely a Roller Coaster Ride and I'm not sure if I enjoy the uphill or downhill better. (Sarcasm intended.)

    I know deep down that something is not right in there. I keep thinking, "How can it be so hard to find?" I will have a few good hours and think maybe they are right maybe It is all in my head. Then I will do to much because of course I feel better and there you have it, back to square one.

    I started a new drug and I was getting some relief from some of the nerve pains in the legs. Not the back pains but the nerve pains. the neck started up but the legs were improving. Then a dark cloud took over and I found myself with this deep dark cloud overhead while struggling to avoid a deep dark hole below. It didn't take me long to realize it was the drug causing the dark depression. (Suicidal tendencies was one of it's side effects in a select few.) I went off the drug and the depression lifted. The pain returned with a vengeance.

    All in all the right leg is about the same the left is getting worse. Go Figure! You know what drives me crazy? My heel now is CONSTANTLY numb and tingling. That used to come and go. Now it is constant. It drives me nuts. I keep wanting to bang my foot on the ground to wake it up. LOL!

    Yes the good doctor that has so far refused to give up is my Physiatrist. He is the one doing my EMG tomorrow. I don't think anything has changed since the last one but we shall see. He handles my meds and has been the one to do all my referrals. No one has mentioned a discogram for me. I have heard horror stories about them. I will ask though! Grrrr.....

    I'll check in after tomorrow. (as long as I'm in the right frame of mind.)

    Anyone heard from Katmouse64?????? Maybe she started a new thread and I just missed it! I'm going to have to look around a bit more I guess!
  • Hi ErNurse,

    Truly thank you for your interest!

    I haven't posted an update because...well, it's just insane. I honestly can't believe it myself.

    I'm like so many others on here, got into this spine issue wanting answers right away. Of course you don't have to be on here long to see that it doesn't happen that way. It's a “hurry up and wait game.” But, I AM SOOO GLAD YOU ASKED CAUSE I NEED TO GET A LOAD OFF MY CHEST. Long Story-So if you feel like listening here goes.

    Go ahead get a refill on your coffee. (Or Drink of choice. You’ll need it.)

    Edited :(
    ..........
    ....two surgeons now that have gone in somewhere in my body after a previous surgery and had to fight scar tissue. My body obviously likes to make scar tissue.

    Fast Forward one week. I am sitting in my Physiatrist office. Yeah, I’m a little set off by the medical community in general.... I had had a particularly rough weekend. The weather was very wet, pain was off the hook, and the day after my stomach surgery I had developed vertigo. No way of knowing why, maybe the new med he had put me on. I was primed and ready. Looking back I feel a little bit sorry for him. I let him have it. (And I do really like this doctor. He’s the only one who has been understanding and caring and you get the picture.)
    The appointment went something like this.
    *The usual check up reflexes still bad, blah blah blah.
    *I want to move forward with the back. He agrees
    *We talk about the meds, and the fact that they wouldn’t give me anything for pain after my surgery because of the pain meds I am on. He states I should have called him. what I am on is for my base line pain.
    *I ask him about my exact diagnosis. He beats around the bush.
    *Do I have arthritis?
    *I ask him if I should take my myleogram disk to my original surgeon who did my fusion and ask him to take a look at the films. Can you really just trust the one radiologist who reads your films?
    *I heard about a surgeon that goes by physician referrals only, will he give me a referral?
    *I then explain to him what the Critical Care surgeon said about the adhesions in my stomach.
    *I explained that I had obtained the surgical notes from my back surgery as well. In those notes my back surgery was 3 hours longer than scheduled due to old scar tissue that was not anticipated. Could scar tissue be my problem now?

    Ok, poor guy probably couldn't get a word in edgewise so he just let me ramble then he went through my chart. Neither of the MRI’s I had done had been done with contrast and he admitted scar tissue was not something he had CLOSELY looked at.

    He didn’t answer really many of my questions. He said he would answer my questions including the ones about the surgeons after he saw the MRI with contrast and got the results. (I did have it done last Tuesday.) He stated. “If it is scar tissue, Something I have learned early in my career, we just don’t remove it. It just causes more problems.”

    So I wait for him to get the results from the MRI with contrast and then hear what he has to say.

    Again, I appreciate your interest I really do. With all of that update I have some questions for you. I do appreciate your post because I was making a list of questions for my doctor this weekend for when I called to get the results of my MRI. You probably have a few thousand for me. (Goodness knows if anything I typed here made sense.)

    First question. You said, “After EVERYTHING is addressed, after having someone qualified(not a physiatrist, in my opinion) determine if you have symptomatic adhesive arachnoiditis..." If it comes down to it, who would diagnose this symptomatic adhesive arachnoiditis? When would I know it is time to check for this diagnosis? Oh, I am so not ready to consider a spinal cord stim. So not ready! But....


    2nd Question You said, “In my opinion again, don't let anyone push you into a spinal cord stimulator until your potential underlying issues are addressed.” Can you tell me exactly what you mean by underlying issues? You also said, “I would try to get all mechanical abnormalities corrected that I could (except I would not do facet joint or rhyzotomies((sp?)” I guess I am wondering what you mean by mechanical abnormalities. Are you just talking about the herniated disc etc.?

    Last Question. MAYBE. Why do you not recommend the fact joint or rhyzotomies? (I did do 2 of the FJ injections with no noted improvements so I did no more.) I am so leery of anymore needles. (The cortisone makes me miserable too.) But if they recommend then again...

    Oh my! How long can one post be? How awful. If you are still reading, thank you. Aren’t you sorry you asked?

    PS. let me ALSO say that IT’S MY PHYSIATRIST that said he wishes he could find a surgeon willing to go in and take the hardware out and just have a “look see.” Even my PCP has said “there’s no test like the open body test.” Unfortunately I haven’t found a surgeon to do that. Every Image I have done shows the hardware looks great so no one is inclined to believe otherwise. I complain about a PINCHING-SHARP pain slightly to the left. Sometimes it will knock me to the ground, besides the normal back and nerve pain. Nope, don’t know what it is but your hardware looks good. Well, Okay then.
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