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Please help! Failed Spinal Fusion

debra1222ddebra1222 Posts: 8
edited 04/30/2013 - 5:09 AM in Chronic Pain
Hi all,

I had a posterior spinal fusion on my L5-S1 in 2009 for degenerated disc disease and never felt relief. Then in 2011 I became pregnant, had severe complications during labor and my pain has become even more unbearable since. I had a CT done by my primary Dr and the report findings show that I now have minimal diffuse disc bulge at L2-L3 and L3-L4. Mild diffuse disc bulge, Facet hypertrophy, mild central and subarticular stenosis and minimal foraminal narrowing at L4-L5.

In addition, L5-S1 only partially fused and shows indication of a screw loosening.

I have basically lost all hope. Can not handle the back and nerve pain anymore.I am hoping someone can give me some advise/encouragement.



  • by the way, it would help if you refrain from using the doctor speak. most of us do not understand this especially if we are not doctors. ask your doctors to explain in plain english what this means. you had a fusion in the l-5 and s-1, these are lower back next to the rear end and the upper spine next to the neck i believe. my standard response is 1/3 fusions get better, 1/3 get worse and 1/3 stay the same. it is a crap shoot for fusions but to have 2 in such far away places at the same time is different.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • LizLiz Posts: 7,832
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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Terror8396 - the L5-S1 is not lower back AND upper neck. It is all located in the same area = Lower Lumbar. I've had fusion to the L5-S1 (lower back) and multiple discs fused in the neck (C3 thru C7). Once you've had multiple surgeries and suffer from degenerative disc disease....you start to understand the lingo used :)
  • Jon a really good book to read is 'How to win friends and influence people' by Dale Carnegie. It's old but still holds true for many things. Dale Carnegie was a wise man.

    Hi had a really bad pain day yesterday - I felt sort of Ok the day before and over did it - which when I feel better I think I have only a short amount of time to get stuff done and do it without thinking of the consequences.

    One thing that has helped me is to stop twisting my spine so much which you can't help doing everyday. I find a magnetic underlay and hot packs are good also and my physio has just started taping me to make sure I remember not to twist.

    I have thoracic spine pain - now take meds to keep it a bit under control but found the painkillers didn't work until they were combined with a muscle relaxant, because my muscles were working so hard to protect my spine from the damage.

    Many times I have given up hope - but people are very strong and adaptable You have a baby to look after which is a challenge in itself, it is hard trying to cope when you need to lift - but try and ask for help - it took me years to do this until I called my sister in tears and said I couldn't cope and she came and did my housework for me for a while.

    If you have enough money try and get a house keeper even for a couple of hours. it takes a lot of the pressure off and you are not twisting your spine so much.

    Also if you can lie on the bed with your baby then you can use a heat pack on if it helps. Guess the the drs are reluctant to give you pain meds because of your little one - I hate bottle feeding but maybe it would give you a chance to have enough meds to enable you to cope with the pain.

    Every time I feel there is no hope I remember a friend of mine who topped herself and the incredible pain it caused to her children, family and friends which lasted for years. The people who are still alive really never get over it and it can end up destroying their lives as well. So I would never do it even though at times the pain is so unbearable it seems easier than living like this.

    My story is under this thoracic spine pain is insane in the upper back pain forum, if you want to read it. It does help me reading these forums so I know I'm not the only one but there is new research that has proved the more we concentrate on talking about an injury or problem - it can actually make it worse, which is interesting in itself.

    Stay strong - try and get meds that at least help a bit with the pain - it's not being a wimp and you shouldn't be made to feel guilty. Remember that u have lots to live for, the people around you need you. When I can't cope I try and take my mind off the pain by watching a movie even if it's from bed and distracting my mind in some other way.

    Just having a baby is so much work. Stay strong - there are a few good days, if you can call them good. Be kind to yourself - you can't do everything so try and rest with your baby next to you. Touching another human being is really important in coping with pain.
  • You have no idea how your kindness and compassion just touched me. I was in such a bad place and you pulled me back to hope. The frustation of feeling so alone and not understood has been tormenting me lately. I am beyond grateful for your response. You gave me the courage to reach out and I did. Thank you so much.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,369
    But I understood every word she wrote. Heck I'm not even a teacher either (anymore) but I do know how to use google or bing.
    Where is the love folks?? Can't we keep it light and non-snarkey??


    Spine-Health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!  (Click on Welcome to Spine-Health)

  • Its so hard to find a compassionate doctor who will understand and actually try to keep you comfortable (or at least not suffering). I'm on my 4th pain doctor soon ( haven't met him yet) but gave the last one the boot. I first went to my GP and told him he is referring me to people who suck lol. He then told me to try this new one.i told him I was looking for a doctor just like him, one who has not been jaded by drug addicts and who has compassion and will listen. You didn't mention having a problem with the doctor but I just wanted to say if you aren't getting what you deserve, fire him! Also if you search Facebook for groups, spine health has a site but also put in key words "back" and "pain" and you will find a great private group with support. This forum is usually good too but remember we are all in some form of pain and I guess once in a while can be grumpy (not excusing anyone)

    Grade 4 tear in l4/l5 was missed in first MRI so did injections for a year
    SI joints "messed up" not sure if I will get them fused at a later time
    Had Open PLIF L4/L5 5/28/13
    Woke up to permanent nerve damage in legs and feet.
  • I'm new to the site and didn't know the protocol. I appreciate your understanding, support and kindness.
  • debra1222ddebra1222 Posts: 8
    edited 04/30/2013 - 5:29 PM
    I appreciate your compassion and understanding. I was so discouraged by my past experience, feeling like a number. But thanks to the caring people that replied i did do a tremendous amount of research tonight and found a Dr that came highly recommended for his skills but also caring demeanor. I'm praying that when I reach out to his practice tomorrow they will live up to their reputation. Thanks for sharing and taking the time to reach out to me. Again, many thanks.
  • Welcome Debra! Feel free to ask lots of questions, as so many of us have been "around the block" so to speak.

    Absolutely boot your doctor if you're not happy. I am going to a new PCP starting tomorrow and I hope I will like her.....hopefully she will be supportive!

    I hope you can find some answers.........and find relief from pain! :-)

  • terror8396tterror8396 Posts: 1,831
    edited 05/01/2013 - 4:58 AM
    by the way, my name is jon not terror. i always sign my name and for your information i have had 4 fusions, a disectomey with a lasar, and laminectomy in the past 10 years so i think i do have some idea what is going on.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Secondtimesacharm said:
    The instructions on the site, explaining how to make a first post, say to give lots of details of your diagnosis. Even if they didn't, why the need to criticize the way she posted her injury?? We all deal and process all this in our our own way. It's incredibly hurtful to come to a site for support and be griped at after your first post. All of us need support and acceptance.
    Couldn't have said it better myself! No need to get mean or defensive. We are all here for the same reason.
  • HopeInBraceletsHHopeInBracelets Posts: 73
    edited 05/01/2013 - 11:58 AM
    I understand pain brings out a lot of meaness and frustration but you really should try harder to be nicer. Everyone is here for SUPPORT and understanding. If you are not going to be helpful, dont respond!

    I understood all the words used, as most of us would due to our conditions. Debra, you should really find a good neurosurgeon. Then you can work as a team in getting to your next step. You probably already realize you will need surgery again but with a good neuro and support system you can do anything! Besides,its better to get it done sooner than later so your pain can be " recovery pain"! :).

    I had a 2 level Anterior fusion (L3-L5) in 2007 and am 3 weeks post op from 2nd fusion on L5-S1. My first fusion was a horrific experience. Swore I would be i n a wheelchair before going under the knife again. Well here I am 3 weeks later and doing amazing! There is no reason why you cannot get what surgery you need and get on track to feeling amazing too! :)
    DDD 2 level ALIF L3-L5 in 2007. 4/11/13 posterior fusion w/decompression on L5-S1.
  • I agree with 'Hope In Bracelets".........I would also recommend a good Neurosurgeon. Was it a Neuro that did your initial fusion, or an Orthopedic surgeon? We all have our preferences, but I have had the same neurosurgeon for all my fusions--I totally trust him.

  • Thanks for the last two post. I am scared but thanks to all of the great advice and support I called a top Nuerosurgeon in my area this morning. He takes cases other Drs can't so I am hopeful. I don't think I would have done it without you guys. Thanks you so so much. I was in a very defeated frame of mind for months and you all helped me realize I'm not alone and worthy of getting quality of life back.
  • Please do not ever feel alone here at SH, I had a cervical fusion c4-c7 in May of 2010, I have had nothing but Constant Pain from the surgery. The one issue of the Left arm and hand Nerve Pain was gone Immediatly after surgery which I was very greatful for, However when I woke up after surgery I was in Hoffic Pain, and I was given no pain medicine, I had a family member present who spoke with the Nurse and A Pain Pump was brought to me. I did have a very soar throat as well and I had to communicate on a piece of paper, I was in the Hospital for 2 days trying to get my pain Under Control.

    I now have to look at my Options, as I have a non-union at c6&c7 and also a bone spur at c7 which will require more surgery. I will get Many Opinions from an Orthopdic Surgeon or Surgeons. My first experience was very bad, my afyer care was very poor. So this my plan.

    I cannot live the rest of my life in this type of pain, there is just no way. I do see a pain Dr. and he is the 4th pain dr. I have seen since my surgery. But I have finally come to the Understanding that I need to get this bone spur removed and get my c6&c7 Fused. I had no cadivear, or bone autograft. My surgeon was a nuero surgeon and I spoke with some of his other patients who He was able to help, but they were Lumbar Surgeries and they had A great outcome. For me this was in my eye's a horrible experience, But I must continue the fight and find a surgeon who can Help me with my on-going Issues.

    I think if you were not scared there would be a problem, I am terrified of having another Cervical Fusion, however at this time I am not getting any better infact I am getting worse.

    Please keep us posted, as Most people here at SH are very Understanding!!!! We are all here to Support one another!!!

    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • if i think someone needs constructive criticism i will give it. i don't understand the hostility with me suggesting not using doctor speak. this is one of the main problems with this site, it one does not hug and kiss and use constructive criticism one is chastised. as long as i abide by the rules i have every right to voice my opinion without being insulted. if one does not like my suggestions then go on and ignore it instead of insulting someone. support does not always mean hugs and kisses and support no matter what. so if you feel the need to criticize then one does not need to insult someone.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Jon,

    I think a lot of this is while you may be correct that you most certainly have every right to voice your opinions and thoughts like every other person here, so many people here are in absolute genuine pain and many are new to this and SCARED. People don't want to be constantly scolded and chastised when they are already in enough pain as it is. People DO come here for support and to learn and find things out about themselves. This is supposed to be a "support" group, so to speak.

    This is likely why criticism and somewhat condescending remarks are frowned upon by others. I know you're in pain, too.......it's very hard. So many of us, and you--me, have lived when chronic pain for many years. But to many, this is new to them and I can say that I would like to offer them positive insight as much as I can. I can be frank and honest about "the bad side" of things. It's a lot easier on them when it's presented in a more positive manner. All of us can work on things to communicate better.

  • boy are you clueless. i have never chastised or scolded anyone. i have made suggestions. this is another perfect example of someone who does not have a clue and refuses constructive criticism. i guarantee that most of the moderators are supportive of me. i have never been banned. so once again quit with the insults and focus on the reality of my suggestions. if you don't like what i have written, ignore it. it is a free country the last time i looked
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • The problem Jon is Debra didn't come here for constructive criticism, she specifically asked for "support and encouragement". Lighten up already, in MY opinion, the last few posts you've made have been nothing BUT you're "constructive criticism".

    You know, off topic, this site isn't as nice as it used to be, the constant so-called constructive criticism and the snarky comments are very unwelcoming, it's getting old reading about people who just need some support getting dumped on.
  • bye bye
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • charlie6017charlie6017 Posts: 412
    edited 05/05/2013 - 8:25 AM
    (I removed unnecessary comment--apologies)
  • charlie6017charlie6017 Posts: 412
    edited 05/05/2013 - 8:26 AM
    For everyone else who believes in kindness, personally I would be happy to SUPPORT people when they need it and be happy to offer insight from my own personal experiences--without being a TOOL like the one above!

    I would like to see this site be "what it used to be." Without condescending remarks.
    (edited to remove unnecessary comment--apologies)

  • Thank you for saying thank you.

    It's kind of you to give feed back and very polite of you to answer all the people who have posted.

    Would really like to know how things are going for you and if anything has helped.
  • RangerRRanger on da rangePosts: 805
    edited 05/03/2013 - 1:42 AM
    Don't be afraid to seek more than one opinion from other specialists, it took me several years to realize that which came from the help and support of others here. I also learned to be my own advocate and feel much more confident that I have a better understanding and know what direction I need to take to be the best I can be with what I have.
    We all have our times we feel that we can no longer cope, get some bad advice, or feel we have no support or understanding.
    But if we seek out the positives and not let the "terrorists" get us down we realize that we can rise above. From the reply's to your posting here, you have a lot of support and you too can gain a wealth of information such as I have.
    Keep us posted on your progress and be safe,
  • I have to say when I came to this site I was struggling emotionally and knew that I needed to reach out to people that knew what I was going through. I got a call back from the Dr that I called and they are mailing me forms out before deciding if the Dr will see me. They said my case is very complicated and aren't sure if he can help me. I don't know if it is because he doesn't want to fix another drs failed fusion or because I was honest with them and told them I suffer from depression. All I know is that all of yours support has made me stronger and helped me cope with the fears and frustratations. If this Dr won't take me then I'm calling a Hospital in the city of Chicago and make the trip. Again, thank you all so much!!!
  • charlie6017charlie6017 Posts: 412
    edited 05/03/2013 - 2:07 PM
    Hi Debra,

    It's unfortunately common for many doctors to not want to take on some cases to fix another doctor's surgery, whether it be due to screw-ups or whatever. Many surgeons are on the conservative side, and some are more aggressive, like the Neurosurgeon I go to. My advice is just to be comfortable with whichever surgeon you see--it's super important, in my opinion.

  • debra1222ddebra1222 Posts: 8
    edited 05/03/2013 - 2:17 PM
    Thanks for the great feedback. How did you decide on your Dr? I've done research online. I don't know anyone that has had back surgery besides myself.
  • You're welcome! :-)

    I actually was seeing a pain management doctor affiliated with the University of Rochester here in NY State and after he did a Discogram on me to determine that my L5-S1 was my culprit back in 2004, he referred my to my Neurosurgeon. I liked him right away and felt comfortable. I put off surgery for almost 2 years until I couldn't take it any further---He's done all 5 of my surgeries.

  • I'm so sorry you've been struggling that long and have had that many surgeries. Hope you are well!
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