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Walking wounded.. lost cause???

virginiapvvirginiap Posts: 508
edited 06/11/2012 - 8:43 AM in Degenerative Disc Disease
Hi All, hoping for a little support.
Brief summary
NO specific trauma that started my pain. It all began 6 years ago. After a small car ride my left leg went numb... really numb, I could not even lift it to get out of the car. Once I did get out, I had severe pins & needle type sensation that went from my butt to my toes. This lasted about 30 mins or so. After that I was ok - went to bed that night and when I woke up I could not move. Severe lower back pain. The pain was so severe I was stuck in a spasam so bad my belly button had moved over a couple of inches my sides were completely crocked. When to pcp and he sent me for PT which did not help, gave me some muscle relaxers. Didnt work, gave me some pain killer, which eased the pain. Tried massage, chiro, accupunture. Still no releif finally was sent for MRI after 3 months. MRI revealed disc herniation l4-5, did some more PT. After several months the eposide ended. Continued with chiro care and was managing. Since then I have had several severe episodes of pain and spasm. In 2005 went to NS after Chiro said he could not help me. Had caudal epidural which was like a godsend! Was pain free for a year. Then again same thing. Another MRI now showing migration of disc with frament and another herniation at l3-4. Again, caudal epidural and it helped along with pain meds and muscle relaxers. After 3rd caudal NS said no more, he wanted to do surgery. My pain was radiating down my legs and i was suffering from sciatica. I found a phisiatrist to give me another caudal. this has been my cycle several months of being ok and then bam another episode. Late December I had another accute episode that was horrible. I am still suffering from this. Went back to original NS who gave me cadual. Mri at this point showed severe DDD l4-5 and L5-s1; herniation at l3-4 with annular tear and DDD as well as large herniation at l1-2. I didnt feel comfortable with my NS for many reasons as far as him doing surgery. He suggested a laminotomy with removal disc l12 and laminectomy with decompression at l4-5 with possible fussion l4-5. Shopped for new NS. Found one who was very qualified. He thought an XLIF might work for me on one level. He sent me for discogram. Wow that was awful. Discgram on 4 level and sorry to say I had pain in all 4 but much more pain and distress at l3-4, l4-5 and l5-s1. this bothered him. He said the only approach that would make sense is 3 level fusion but he did not want to do this as I am only 41 and in general good health. He sent for 2nd opinion to ortho with fellow in spinal surgery. 2nd opinon said same exact think. He added that I should just deal with my pain suggested SSI (which PM doc also suggested or IDET)2nd opinion also said that I should not search for another opinon that my discs are fusing on thier own and that he nor my referring doc do surgeries unles they feel it will be successful and with me it wont be.

Sorry this is so long, but I am at my wits end. I have beenn on vicodin, soma, valium and xanax for 5 month and it is doing a number on me. I am still working (missing a lot of time) but I was so disapointed to hear that basically i CAN NOT be Fixed! Dont get me wrong, I do not want to do a surgery either, that wont work but to say oh well, you just have to deal with it.... well, it was harsh and I had to almost run(it that was possible) out of there so they would not see me start balling, which I did. I feel like a lost caused.

Please can anyone empatize with this, have any of you been here.....

If anything thanks for listening.


  • Hello,
    It is a shock when perhaps we thought an operation would repair us back to normal and many can relate to being given a similar decision, you have a good attitude, in the you see that although surgery may have been an option it also carries some risk of failure. We are mandated to accept that risk when the function we did have is diminishing fast and it is seen as our last chance. You are doing well working and that has to be applauded and every effort taken to continue if possible with that working process, I too was told that even after my failed fusion additional invasive surgery was not recommended, the alternative is to keep attempting to find that illusive cure and who is to say, only you know when it is the right time to stop, could you live with the consequences good or bad.

    Some here rue the decision to have continuing surgery that leaves them distanced from the initial objective of a cure or at least reduced pain and improved quality of life. We must all be guided by medical recommendation, the doctor is thinking of you, nobody would be more pleased if a successful operation were possible and it takes guts to tell any patient the reasonable expectations they have are unattainable.

    I have had my pain many, many years and my advice would be to do your very best in managing it, pace well and do everything possible to optimise your lifestyle, if you can survive pain every day which you have been doing already, you have the capacity to manage it more effectively over time with improving tools and techniques.

    We all place faith, hope and expectation in medical intervention and our best chance now is us taking responsibility and empowering ourselves, this is not simple or easy, find what works for you and do more of that, pace well and never stop adapting.

    Take care and good luck. John
  • Hi I to was told there was nothing more they could do. So I talk to my PM DR about SCS. Well i had it done last Thur. Boy am I glad I did. I am able to walk now and sit and stand. I have walk a mile yesterday. Not bad before the SCS I couldn't even walk a block.

  • Jim,
    Thanks for your reply.
    that is what my PM suggested he called it a spinal stimulater implant and said it may help me through my pain. He said there is a trail I can do where the leads are sticking out and if I have good results we can do the implant. I looked this up and it seems so, i dont know bionic women like. I am glad to hear you are finding relief from this procedure. Can I ask you, how big of a surgery is it? How big of a scar? How often do you have to change battery, my PM said every 5 years or so, but what i saw online was more like 2 years.
    Who did the procedure, did they have to shave any part of your spine???
  • John, I love your quote in the your tag line.
    Thank you for taking the time to reply. I see you too have DDD. What a pain that is.

    You are right, I have been managing. Right now I have to admit I am so whacked out on pain meds, if I speak I slur, if I stand I wobble. But I have to manage some how. It is so frustrating and almost like a death to have realize this is it, there is no magic fix. I mean when a highly decorated ortho spinal surgeon tells you not to look around and find a surgeon that will cut you and leave you worse off it is pretty depressing - just as constant pain is depressing. When not havingn an eposide I am fun and outgoing, when my back is out, wow it is like the complete opposite.
    But again you are right the worst thing would be a 3 level failed fusion.

    Thank you again for your reply. I wish you many pain free days!
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