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    Old 10-31-2006, 06:33 PM   #1
    Justoneofus
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    Possible Failed Fusion - "Terrifed"

    Sorry but this in a long one, grab a cup of coffee or tea first. I am just very scared right now and could use some tlc from all of you here.

    Well, I have been doing so well up until about 3 weeks ago. Heck I was even tiling my bathroom floor about 5 plus weeks ago and was still doing great. Two weeks ago I get an evaluation done at my physical therapist. IT was literally the most pain free day and healthy feeling day I've had in years!

    It went down hill from there. My PT was stepped up some to get me stronger in my weak areas, mostly my right lower back and butt muscles. A few of the muscles have been really slow in responding. So what do we do.. more rigorous therapy to work them better. I trust her and still do. But the darn stuff began to flare me up like it has before. This time we were hoping the flare up would subside and we could get "over the hump" so to speak.

    Well.. things have gotten progressively worse. Nerve pain has increased in my left leg, now also on the right leg, getting those "phantom nerve pains" like I had just after my fusion surgery all over the place. It's like im short circuiting back there or something. My feet go on fire at times, go numb at times in different places, my lower lumbar aches at the fusion area above and below and to the left and right at the l5/s1 and I am once again.. my own pain in the arse! My therapist and I spoke at length last night. I was her last patient. She thinks the hardware was stable and with her testing.. neuro seems okay and dural sac seems to be intact as well. But she is concerned with the pain and type I am having. We think maybe some serious swelling again.

    I call my surgeon this morning and I haven't seen, complained or spoken to him since July. I get a very prompt call back from his nurse. Explain what is going on. I mention could it be broken hardware, as my back just doesnt seem stiff and solid like it did before. She put me on hold, and comes back and says the surgeon wants you to come in today for an xray and will go from there.

    Well, that's where my being terrified began. They take the xrays and the PA comes in. She says she had my doctor look at the xrays and it could be possible "non union" or "failed back surgery". I think she saw the devestating look on my face. She quickly said.. well don't go there just yet. We viewed the xrays and she said.. well clearly there is something going on there and it could be fused, we just can't readily tell on these xrays. But a non union could explain my pain. CT scan will be ordered and they will let me know when that is to happen and we will know more then.

    I feel like I am having a bad dream or Im in the twilight zone. It feels like an out of body experience, but nothing pleasant about it. I have felt really really good up until really the last two weeks. It's just gotten steadily worse. My hips are aching on and off as well. This just sucks! I thought I was working my way to a successful fusion and boom! I have been a good girl too not overdoing things, especially since the extra workout stuff. It's made me so sore and then flared up.. really couldnt do much else.

    Well thank you for letting me take up your time and let me get this all out on here. I am doing alright with this mostly. I am scared and sad of the thought of this becomming serious again. I have bought the deluxe "pity party favors" made especially for me, in case I get the CT Scan results confirming "non union". I just hope I dont get to use them! lol.

    I will update you as I know more. You all take care. I dont know where I would be without the help of all of you on here. You have helped me learn so much and offer such wonderful support. Thank you. Tammy

    Oh boy!
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    Old 10-31-2006, 08:01 PM   #2
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    Re: Possible Failed Fusion - "Terrifed"

    Oh Tammy,
    How I feel your pain, i'm so so sorry that your going thru this. Boy wouldn't we be two good ones together, lol. At least we can lean on each other. it si so hard to look for the good at times like this. I wish we could give those warm caring hugs thru here some how. I wish I coudl help you and evryone else on here that is suffering so. Hang in there, as we have told each other at one tiem or another your mcuh stronger that you think you are right now.

    How I pray your not looking at a failed fusion, the CT will how you so much more detail. My last CT in july showed that the disc above the attempted fusion is starting to go bad on the right side, i'm havng pain problems there nnow too, anyway I'm on here to bring my trouble in but to help you. Like I said, the CT will help so much to understand whats going on.I will be praying and hugging till you get an update. I know it has to be good news, we pray too hard for bad news to occur.

    Good Luck & God Bless

    Carol
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    Old 10-31-2006, 09:32 PM   #3
    Justoneofus
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    Re: Possible Failed Fusion - "Terrifed"

    Thank you Carol for your kind words as always. When the therapist and I were chatting I was thinking either hardware or disc l3/4 which is of course is above my fusion at l4/5. Therapist is thinking maybe l5/s1. Heck, spin the roulette wheel and see where it lands it seems. It's such a crap shoot isnt it.

    Failed fusion or not, this pain and the nerve pain in the legs is coming from somewhere. Just now have to sleuth out where from. It's darn frustrating indeed. We are trying a medrol pak to see if it helps. Just started them tonite, so will see in the next day or so if it offers any relief.

    On to you, I was so sad when I read your post earlier, it actually made me cry. What do they do for you now? Does the hardware just stay? Logically you would think they could insert some hard indestructable plastic wedge of sorts to put there with hardware to keep everything properly spaced and aligned then hardware to keep it from shifting, etc.

    Something I may have mentioned to you earlier in the year was an Alchemist I stumbled onto. They work with doctors to help patients manage pain. The alchemist can make all sorts of "taylor made" concoctions to best help patients with medications. Many people can't or get to the point of not being able to tolerate certain meds or become too tolerant to meds. They mix a little of this RX with that RX. You get the idea, but they make them in different forms as well, such as ointments and creams that are then absorbed thru the skin. Something that you may want to explore. I will use this resource if I am faced with the same.

    I have a great pain management doctor but he is out of my insurance network. But I trust this guy totally. I think if I wind up there, I will be pleading with him to take me on with what my out of network fees will cover as I am to the point that I could not pay the high out of network costs anymore. He might be receptive to that. Worth a try if needed.

    But I will try not to jump too far ahead of myself just yet. Im still in the early stages of this and hopefully we will see union by CT Scan. Would this be done with dye I hope so we can see more of things? This is not something I discussed with the PA. I was still dumbstruck to ask her about this.

    Well A virtual hug back to you Carol. We will get through this stage hurdle too! You hang in there and I will do the same. Tammy
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    A Success, but still improving!

     
    Old 10-31-2006, 10:08 PM   #4
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    Re: Possible Failed Fusion - "Terrifed"

    It upsets me that noone can understand pain when it is your pain. Half the odcs think that 1faking it, or 2. they did a great surgery and how could they have done anything wrong. good luck and god bless you

     
    Old 10-31-2006, 11:25 PM   #5
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    Re: Possible Failed Fusion - "Terrifed"

    Dear Tammy, I am SO sorry to hear your news of new pain and possibility of non-union! After such positive recovery from your surgery, and all your hard work in PT-I can not imagine how hard this must be. You have been such a support to me and all the others on this board-know that we are all thinking of you and lifting you up no matter what happens. You are a very strong person, and I know you will get through this. Let us know how things are after the CT scan. I know how hard it is to wait for those tests, not knowing anything for sure. The waiting and not knowing is so much worse than just knowing what is going on. Know that I am thinking of you..Take care, Kera

     
    Old 11-01-2006, 06:45 AM   #6
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    Re: Possible Failed Fusion - "Terrifed"

    That really sucks Tammy ! Sorry again,. How many non-unions have you had ? I don't think I'm healing either by looking at films. Next time I need a revision , I'm going to demand the bone stimulator..You would think after the second non-union they would offer it ?

    Keep us posted on your CT results..Dang you were doing so well.

     
    Old 11-01-2006, 07:49 AM   #7
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    Re: Possible Failed Fusion - "Terrifed"

    Dear, dear Tammy,
    Many virtual hugs to you!!! I feel like I know you and was devastated to read your post. I'm so sorry you're going through such a huge set-back. I do hope you were able to sleep last night and that you're doing okay today. I'm praying for you, as are many!

    Try to focus on that one hopeful word: possible. Let's all keep praying that the CT scan will show growth that the xray didn't. Unfortunately, the waiting is the hardest part right now. The not-knowing is just nerve wracking. I hope that as you rest and the swelling comes under control, you'll feel better and better even before the CT appt. There's still room for a lot of hope here! They did say that the xray showed something going on, just not as much as they expected to see? But aren't you only six months out from surgery? That's still not very long. My understanding is it can take 6-18 months for a solid fusion. I know those three words are terrifying, but don't give in to despair. There's a very good chance that you'll still get good news after the CT scan.

    But if you don't, you have a lot of love and support, both here and in person. You'll get through this! You're in good health otherwise, went into this in great shape, and have the determination and muscle to work your way back. You'll do whatever you need to do, and you'll get there, even if you've had a backwards step now. Maybe use a couple of those pity party favors right now. Nothing wrong with some grieving and tears. We're grieving with you! But save most of 'em. I hope they aren't too personalized so that you can pass 'em on to someone else when you find out you don't need them after all! That's what we'll be praying for!

    Keep your faith!
    Much love,
    Emily

     
    Old 11-01-2006, 07:53 AM   #8
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    Re: Possible Failed Fusion - "Terrifed"

    Thank you so much for everyone's kind thoughts. It's really keeping me going, thank you!

    Shawley, this was my first back surgery. No micro d's before either. But yah, it does indeed suck right now. I just hope it's temporary but these symptoms I am feeling dont feel temporary unfortunately.

    After sleeping on things, and analyzing what went on yesterday, I'M OPTIMISTIC I AM FUSED! (Im gonna hold onto that.) I looked at my xrays pretty thoroughly and the fused disc looked just a cloudy as all my other discs did there. Umm, maybe I should rephrase that. It looked as opaque as the others, not less. Only I could see the edges of the cages there as well. (They did say before coming in after I mentioned could it be broken hardware, to come in for the xray.) So after putting two and two together.. Im more at ease this morning. It took me that long to put this all into a better prospective. The xray was nothing more than to see if the hardware looked intact. Duh, why I didnt figure that out yesterday is beyond me. But I was so stunned by the words "possible non union" that I hardly thought of anything else at the time and afterwords.

    They are just trying to figure out where my pain is coming from. My symptoms are different than before the fusion this time. And my pain centers above, at below and around the fusion, so it may be non-union or it could be another disc or maybe scar tissue broke off and is irritating a nerve. With the added nerve pain bonus if you wanna call it that. It's an irritating nuisance it is, and I can't take nerve meds, so I just have to deal with them.

    So I am VERY OPTIMISTIC TODAY, and all of you are part to thank in that as well! My spirits are high, and so am I! hahaha. Just kidding! I will let everyone know as soon as I hear when it's scheduled and as soon as I hear the results. Thinking of you all and wishing us all a pain free life! Tammy
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    L5/S1 bulging @ 18, now 46; still there (but no pain)
    Fusion at L4/L5 Apr -2006
    Solidly Fused Nov-2006
    A Success, but still improving!

     
    Old 11-01-2006, 08:08 AM   #9
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    Re: Possible Failed Fusion - "Terrifed"

    Thank you Emily! Very kind words. Surprisingly enough, I was so exhausted mentally from it and took a good first dose of the prednisone and my usual pain meds (just vicodin and skelaxin), I slept pretty darn good. Better than the last 3-4 nights actually! I have seen some "minor" decrease in the pain so the rhoids must be starting to kick in some. And I usually get what I call the "marlon brando voice" for a few days when I take the prednisone. My boyfriend was delighted the first time I took them years ago, as I lost my voice for about 3 days. He was in heaven! hahaha.

    I keepin the faith Im fused. In that disc space other than the cages, it looked just like the other discs did in cloudiness. So I am glad they are being cautious and checking all avenues to see what's happening with me. I have learned to not dwell too too much on "what ifs" though I did pull out one of the party favors and use it yesterday. Just one though! (And while they are taylor made for me, they are also readily interchangeable for others at a push of a button! hehehe.)

    Thanks again, and I will let you us all know as soon as I have some more information. Hugs to you! Tammy
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    L5/S1 bulging @ 18, now 46; still there (but no pain)
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    Solidly Fused Nov-2006
    A Success, but still improving!

     
    Old 11-01-2006, 04:21 PM   #10
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    Re: Possible Failed Fusion - "Terrifed"

    Hello,
    I dont remember how far out you are but I am 8.5 mos post L4-S1 and am experiencing the same as you. I was told at 12 weeks that I am fused. I have been getting a light dull ache down my left leg and my back is just very achy at my incission site.

    I also have very tight muscles in my back that I think is putting pressur on a nerve. Dont freak out yet. I am fused and started to have these flare ups at 6 months out. months 2-6 were great.
    Sheri
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    Old 11-01-2006, 06:37 PM   #11
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    Re: Possible Failed Fusion - "Terrifed"

    Thanks Sherri. I am 6.5 months.. 7 months on the 18th. Life has been great up til the last few weeks and it started with more agressive PT. But it really wasn't aggressive PT by average, just for me as it was going well but a bit slow. But it was all pretty positive up til now. I spoke with my therapist today cuz I was to have PT tomorrow. I told her what happened at the docs yesterday and the nasty phrase popped out "possible non-union". She said she didnt want to say anything but that was her thought as well, because of my lack of progress and being able to get past where I am at in PT. Ughh.. I didn't really like hearing it, but glad she was being open about it all. So we decided to see what the steroids might do and possibly continue with PT on monday. I also have a back muscle that is virtually unresponsive and just has been very very unwilling to work, in which my therapist was really working the last few weeks, which in turn brought on the beginning of all this new nerve pain down my legs, the ache in the lower spine all they way across, into my hips, etc. Just not been a fun ride the last few weeks, but I am hoping to get some good news some how.

    In some sick way, Im not so sure I wouldnt rather hear that my fusion failed then to tell me other discs are going. In my sick twisted thinking on that, then at least it's just a fluke it didn't take and a redo with different strategy will solve all my problems. As you can see, way overthinking here. hehehe.

    Well, I will indeed share my news with you when I find out what the CT says and where we go from there.

    I hope you are not having the same problems I seem to be embarking on. You hang in there too! Thank you for your kindness.

    Tammy
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    L5/S1 bulging @ 18, now 46; still there (but no pain)
    Fusion at L4/L5 Apr -2006
    Solidly Fused Nov-2006
    A Success, but still improving!

     
    Old 11-01-2006, 07:06 PM   #12
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    Re: Possible Failed Fusion - "Terrifed"

    Tammy,

    Sorry for what your going through. You are ONE of the biggest inspirations on this board. I know I don't post often, but please know that I do read all the stories on this board daily and follow you all. My prayers are always with each and everyone on this board. I have tears for you all, on your bad days.

    I hope that you will get good news with your ct. Your faith and strength will get you through this. Stay positive, as you do, and if for some reason, it's failed, then you will deal with that when the time comes.

    Glad that today has been better for you, and if/when you need to have a pity party, well it's well deserved.

    Here's to a good and peaceful nights rest for you. God Bless.
    Bernie

     
    Old 11-01-2006, 07:59 PM   #13
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    Re: Possible Failed Fusion - "Terrifed"

    Aww.. thank you Bernie for your kind words for me. I refuse to be a victum to this thing, it's done enough already.. so it's important to just keep fighting on. I have a wonderful boyfriend and supportive loving people all around me, with so much positive energy.. it's pretty easy to stay upbeat most of the time.

    We all deserve the pity party favors now and again. hehehe. Thank you for taking the time to post and I am so glad you did. It's good to hear from you and that you are doing okay.

    I wish for you a clear and fast road to wellness. Take care. Tammy
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    L5/S1 bulging @ 18, now 46; still there (but no pain)
    Fusion at L4/L5 Apr -2006
    Solidly Fused Nov-2006
    A Success, but still improving!

     
    Old 11-01-2006, 08:06 PM   #14
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    Re: Possible Failed Fusion - "Terrifed"

    HI Tammy,
    I'm so glad your in better spirits today. I started off my day wanting to stay in bed and just resign from life. I got on here and really felt if I did that I would be letting you all down and depriving me of the benefit of all of yours and others posts.

    So here I am, I had been enrolled in a Citizens Police Academy and tonight was graduation night, well I really didn't want to go but I did. It was so nice, 37 people including me & my hubby graduated. I had the commmander of our district come up to me and ask if I coudl help another woman start a block club on her street because ours has been so very successful. I guess God does put things in our lives when we need it.

    I am so grateful to all of you one here for the caring words. Tammy I have always felt that connection with you from the start, you eally seem to know how to reach out and make others feel so good. Thank you so much.

    I do hope & pray that you will not have to deal with what I am right now. I know with my failed fusions I never had the back pain you speak of, so maybe your having some major muscle thing going on now. I will be praying!!!

    God Bless

    Good Luck

    Carol
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    Old 11-01-2006, 09:16 PM   #15
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    Re: Possible Failed Fusion - "Terrifed"

    Hey Tammy!! I just caught up with the posts and I am so sorry you are having to deal with this! You are truly a lifeline and consistant source of knowledge and inspiration for everyone here. I am praying for you daily and want to know the results of your CT. I don't check posts at work (new job) but will start tomorrow so I can stay current.
    God has a plan and He has used you to help so many others already. I am praying peace and healing in your direction sister!
    Blessings,
    Michelle

     
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