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Frustrated, Scared and Confused

lizzyboollizzyboo Posts: 24
edited 06/11/2012 - 8:46 AM in Back Surgery and Neck Surgery
I have not been on here in nearly a year. I have been treating for low back/leg pain for approx 8 years. I have had numerous injections and conservative treatment. I was treating for a bulging disc that was compressing a nerve at L4-5. I complained of left leg pain being worse than right, however the pathology really only explained the right side. In 2008 I had a bilateral lumbar laminectomy that was supposed to be done at L4-5, did not get better and then learned that the surgeon did L3-4. Did the trial for the stimulator, but then blew out my disc at L3-4. Saw a different surgeon, had a discorgram that showed pain from L3=S1. In June of 2009, I underwent a two level fusion L3-5. Did good at first, but then the pain started coming back in the legs, the back pain never stopped. Was off work for 6 months, upon my return to work everything worsened. This June I had my hardware removed. Now my left leg is doing pretty good, but now I have new symptoms. I still have major back pain, now I have major numbness and tingling in my right leg especially from the knee down and now I have it in all of my toes. Even my ankle and heel will hurt. I have sharp pain, stabbing, burning, in my butt and thigh. I just had another MRI on Monday. I am wondering if there is anyone that has problems with L5-S1 and if so what their symptoms are. My concern of course is that there is something going on with that disc. I know during my fusion surgery that did remove some bone spurs, and my last MRI I think he said showed some arthritic changes. I am having more difficulties at work, pretty much leave the grocery store in tears because of pain, scared to death of another surgery. I am 35 years old and have a 3 year old daughter,who has never known me to be well which just breaks my heart, because I can't play with her like I want to, or have to tell her I need to stop. I am so tired of being on tons of medications. I am just tired of being in pain every second of the day, I am tired of being limited and am scared beyond belief. I can't even fathom being like this for the rest of my life. Any information would be appreciated. Also has anyone ever tried acupuncture?
2008 bilateral lumbar laminectomy supposed to be done at L4-5, but was done at L3-4
2009 two level fusion L3-5
2010 hardware removal
too many injections to count
trial of spinal cord stimulator
currently taking, Neurontin, Oxycontin, Valium, Baclofen, Norco and Cymbalta, and still have major pain. :{


  • Well - my daughter is 17 and never known a time, when I could pick her up. She just has always known that her dad, can sit and lay down, and be her pillow. Many times when she was sick, I would prop her on my chest while she slept, as a baby. I could not sleep then, so it worked.

    Sometimes the hardest thing is realizing that we are getting caught up in what we cannot do and maybe need to focus on what we can!?

    My nickname is C45 - it should be C49 , its been another 4 years, since I have lived with this. That means a lot of time - and lot of hours.

    I have used Acupuncture - with an Acu-Pen -with good results. My results are my own. But I would encourage that this work with helping our backs and lives is also about "learning to live!"

    I know that I was about ready to do physical harm to the person who said it to me, because I felt that he was being a smug idiot, but the truth of it for me too, has been a life-long devotion to learning how to reduce the pain -stuff - one little bit and then expanding that discovery as far as it can be taken. And then look for the next idea.

    I do trust that you have some relief
  • Lizzyboo,

    I'm not part of the normal "welcoming committee" on this forum. I just saw your post at the top of the list and clicked on it. As much as you probably don't want sympathy, I want to say that your post brought tears to my eyes. I have had three surgeries at L5-S1 and I'm still in pain. I'm taking most of the meds that you listed in your history and I'm still trying to get to the root of the problem. My issue pales in comparison to what you have experienced, so my heart goes out to you.

    To answer your question about L5-S1 symptoms, I had a very badly herniated disk that was protruding on the right side and it apparently did some damage to my sciatic nerve. After two years, I still have no reflex in my right achilles tendon. As far as pain goes, I feel intense pain in my lower back (right side, slightly off-center), my right buttock, and then I feel a "cramping sensation" behind my right knee and I feel "tingling" in my middle toes on my right foot. If you looked at a nerve-map (you can find one on Google), my pain aligns with the L5 nerve mapping.

    Interestingly, I guess, I never had intense leg pain. I don't know why. I believe that my issue was misdiagnosed for over a year because doctors are always looking for leg pain as a sign of a bad disk. Meanwhile, I was losing strength in my leg, had foot-drop, and numbness. I'm guessing that my nerve was so badly impinged that I skipped the pain and went right to numbness??? I wish I had a proper medical opinion on that, but I don't.

    I'm sure you will find a lot of support on this site from a lot of people dealing with similar very scary issues. I admit that I'm very scared about my own future because I can't sit at a desk or drive -- it's simply torture, yet my job entails desk work and meetings for 10-12 hours a day. I can't do it. Also, with all of the meds I'm on (and I'm likely to start Cymbalta next), my cognitive abilities are not what they used to be.

    If you have follow-up questions about the L5-S1 symptoms or treatments, I would be happy to share my experiences.

    My thoughts and prayers are with you!

  • Hi I was having the same problem you are having till I got my SCS You might wanna talk to your DR about one

  • Thanks for your reply. I know everyone experiences different things, but what you describe is similar to what I am feeling, except that my whole leg will feel crampy. Is your back pain kind of sharo feeling? I too have no reflexes in my Achilles, and my last appt for my medication check, I didn't have one in my knees. This was on both sides for both reflexes. I just don't get it. When I look back at my different x-ray reports, MRIs, etc., usually that area is fine. I think I had one x-ray that said facet hypertrophy at that level, but never anything with an MRI. My first discogram was positive at that level. Unfortunately, my last discogram was a complete and utter nightmare. I was so worried because the medication they give you before an injection or discogram doesn't work on my anymore thanks to all of the medication I am on. I informed the nurse about this but they didn't increase it. So I felt the first poke which hurt super bad, then the next poke he hit a nerve which just set my leg on fire. I was bawling, almost to the point of throwing up, couldn't even concentrate on what he was doing because of the leg pain from hitting a nerve, which he ended up hitting a second time, and then he just said that my L5-S1 was fine and he canceled the CT scan that goes with the discogram. So I don't feel that it was a true test in that you are supposed to be relatively calm to tell them what you are feeling. With my surgery mishap, I am just so scared that there will be further screw ups. I know I need to just be patient and wait for the results of my latest MRI. I too have a desk job and it sucks. I work for a small law office so my boss is pretty understanding, so I can bring in my pillow and get up and move around whenever I want to. My cognitive skills are not all there either. Luckily I keep a journal so I can actually trigger my memory for some of those precious moments with my daughter.
    Unfortunately, even if there is something going on at my bottom level, I can't do anything about it which worries me because I wouldn't want to make anything worse, and what if there was something that could actually make me better than I am now?. I am in a precarious situation though in that another surgery would mean definitely losing my job, and I just separated from my husband (who of course is the one that has the health insurance. So I have to keep putting one foot in front of other regardless....Again, thank you so much for your response. It is so nice to speak with people that actually have an understanding of back problems and chronic pain. People that actually "get"it. I wish you the best of luck as well. thanks
  • I'm so sorry you are having such a time. My girls are older, 13 and 15, and they've seen me like this for the last 5 years. A lot of my time was spent dwelling on what I couldn't do and thinking I was letting down my children. I've since realized that they viewed it totally different than I did. They knew that it was my pain that was stopping me from doing things that I'd see other mothers doing. They take it a lot better than I do. Children are resilient, thank goodness.

    Your daughter is so young and I hope you can get at least some resolution to what's keeping you in pain.

    My pain was exactly like what you described above; severe pain in the buttocks, down the leg, into the foot and heel, and numbness of all of my toes. I'm very fresh post op, but I can tell that the degree of leg pain has greatly diminished. Let's just cross our fingers that it stays that way :)
    The pains that I used to feel from the butt on down felt a lot of times like it was a "rolling" pain. It almost felt like a wave of pain would start at the top and roll all the way down. My leg always feels like I have on a stocking that is 2 sizes too small and my foot feels the same. Almost a feeling of fullness, if that makes any sense.

    I wish you the very best of luck in your spinal journey! Wishing you quick answers and resolution regarding your pain.

  • Welcome back! :H

    Sorry that you needed to return here, but hope that you will feel the support that is freely given on this site.

    I am interested in the fact that your laminectomy was done on the L3/L4 level instead of the L4/L5 level.
    Didn't the surgeon realise during the surgery, and then correct his mistake?
    What did he say afterwards?

    My surgeon also started working on my L3/L4 level instead of the L4/L5, but he realised and moved down to the correct level. I am very relieved that he did realise, because he was doing a fusion as well as decompression with laminectomy! :S
    I wouldn't want to have had a 2 level fusion unnecessarily.

    I haven't tried acupuncture, but am thinking of trying it for my neck problems now. (My lumbar spine, is much better now :-))

    I hope that you find someone who can help you and get you back on track with your life, so you can enjoy bringing up your daughter :-) >:D<
  • Thanks for your comments. The surgeon totally screwed up. I actually have a medical malpractice case going on. He was a surgeon that our office used as an expert for our worker's comp cases and new his staff really well. There are a couple of interesting tidbits that we have learned thus far. Typically when a surgeon is done they put something metal on the spot where they are going to operate and take an x-ray and wait for the verification that they are at the correct spot. He had the L4 spot, but apparently he went up instead of down. The x-ray report that was done to confirm the spot showed that the x-ray was taken 21 minutes after the fact. My operative report states he did surgery at L4-5. He barely talked to me and I never really new what was going on but he always talked about his wife and his wife's surgery. Apparently, him talking about his wife is all through my medical records. I am so curious as to where she had surgery. I think it would be interesting if she had surgery at L3-4. Plus he never even gave me any restrictions after surgery, he just said do what you can. I am glad that your doctor did not make the same mistake. I believe with every fiber of my body that had this not happened, I would not be in the position that I am in. I am glad to hear that your lumbar spine is doing much better and I will send some prayers your way that it stays that way. Keep me posted if you try acupuncture. I have a friend that is trying to find the name of one that her mom used and am seriously considering trying it. I certainly have nothing to lose!
  • Thanks for your response. I appreciate it. I know you understand being a mom yourself what we do to ourselves where are children are concerned. You are absolutely right, children are resilient. I am just having a difficult time coming to terms with my limitations. I was always that person who was up for anything, active, fun, happy, not someone who sat on the sidelines. So redefining some of these roles has been quite difficult for me. i guess you could say I am still in my angry/denial phase, lol! i am sure on one hand the sooner I come to terms with the reality of everything I can cut myself some slack. It has been hard enough finally coming to the realization that having another baby, which is why I had the first surgery in the first place, to get better so I could get pregnant, is not going to happen. so having to give up on that life dream of having the classic family two kids is not going to happen has been difficult. My brain usually works the right way, knowing not to dwell on what I can't do and focus on what I can, etc., it is just my heart and soul that just doesn't want to listen yet.
    I guess time will tell what is going on. I should be getting my MRI results back soon. It is such a double edge sword, part of me hopes there is something there that explains why I am hurting so bad in that leg, to know that perhaps there is something that can be done, but on the other hand you don't want anything to be found. Crazy. Thanks for your well wishes, and those wishes are the same for you!
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