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New here - with an unusual case

qqpepperqqqpepper Posts: 2
edited 06/11/2012 - 8:47 AM in New Member Introductions
Hello everyone in Spine Health. I'm Pepper. I started off with broken facet joints at L5 level. The disc at that level crushed, and immediately I had a MIS TLIF to fix the problem. That was done in 2007. After the surgery, pain never left me. Therefore, I had revision in the same area in 2009. This surgery complicated matters, not only was the revision not sucessful, I was down with hematoma seroma and infection. After several surgeries, and antibiotic treatment, that took many months to recover externaly, I still didn't feel right inside. I sought several different opinions from different facilities, including overseas, had several recent sets of MRIs and CTs for the expertise. All came back with the same results:

1) A failed fusion, (not to be confused with Failed Back Surgery Syndrome (FBSS)): In my case, the fusion didn't happen. Some bones grew around the cage, but it didn't join the upper or lower level bone. The reason is that BMP-2 that was used had leaked throug the opening, and 2)causing Ectopic Bone Formation on the L5 left exit nerve endings and openings. The bone has totally grown onto the nerves that travels down the left leg.

Needless to say, my main problem now is my leg is numb, my toes hurt at touch, and I can't lift my leg, I basically have to drag it. I use a cane or a walker now when I commute. The pain level is at a constant 7-8. Right now, I'm on Fentanly patches, lidocain patches, morphine, percocet and lyrica for coping. These medication causes servre nausea, and I throw up on a daily basis.

The new surgery option is to perform a 2 days surgery -
day 1, 360 re-fusion anterior;
day 2, Removal of the ectopic bone posterior, and implementation of instruments.

I'm hestitant because the surgeon admitted that he has never seen any patient with my situation. He added that such cases are really rare. 2ndly, he has never done this kind of surgery before, i.e., removing the bone from the nerves, there are many possibility that the nerves will tear and further damage the function of the leg; and the overall success rate is 50%, and I will still continue to feel pain even if the fusion is healed because the nerves will be irritated.

My 2nd option is to accept my current condition for life, using medication and epidural shots to maintain my pain level, and possibility of using a SCS in future.

Currently, I have a hard time coming to terms with myself. my bed is soaked with tears and night sweats, I need to learn how to cope with the chronic pain for the rest of my life. I can't do daily household chores, I have young children to care for, and I need help with many things, including meals. I can't drive for more than half an hour to a place because I will feel nauseated and throw up. This happened last three weeks already. Thankfully, I wasn't driving.

I'm here to receive support, to help me understanding what I am going through. I am trying to find different options. And I'm trying to seek professional help and hopefully, I'll find the strength to search the internet for one.

Thank you for listening,



  • Welcome to Spine Health. Unfortunately what you may find here, are others who have rare and challenging cases as well. It's the reality of spine surgery that many don't want to hear about or acknowledge unfortunately. So my point is, you are in good company. Also along with that, are many of these same folks are able to find ways to regain a functional life. The key in all of it, is not to give up or give in. There is someone somewhere that has taken care of a case or multiple cases such as yours. My hope is, that through this forum you may have some luck with someone pointing you in the right direction to find this doc.

    In the meantime, kick back, meet the members and let us know how you are doing. There's always someone on line here and we do have chat rooms as well if you like to chat with others. You are not alone anymore.

  • Just a thought, but have you considered finding a more confident surgeon, or are you basically stuck?

    My first surgeon had the same kind of attitude. "Hmmm, you're going to be hard to fix, this is going to be a lifelong issue."

    My current surgeon is very confident. Now, we'll see if its misplaced!, but in truth he just does a lot of trauma surgeries and sees a lot of injured backs, so my case isn't so unusual to him.

    It is difficult to find the doctor with the experience in your particular issue. For me, I did a lot of searching for people who wrote papers on specific surgical procedures, asking around my other medical team, etc. until I found someone who had the experience I needed.

    Just a thought :) It just seems like you need someone who is more confident to get in there and fix you up!

  • hello and welcome to spinehealh Pepper,

    your story is very moving and i feel your pain especially as you have a young family
    I totally understand how your feeling right now as I too started of on this road 10years ago initally with a young family.
    life is very tough for you right now, as I can tell by your post. Your words are from the heart.
    Im here everyday so if you feel the need to chat just send me a PM.
    Emotionally im with you right now and I know for a fact you will find all the support you need here on spinehealth.
    This is a wonderful site which has helped me through a lot of emotional and painful times.
    Its nice to find people that understand where your coming "from so to speak".
    Good luck on your search and once again welcome aboard!!!

    LOVE P
  • Welcome to Spine-Health. "C", HBmom and Mrs. P have all said some great things that are very true and have offered some valuable suggestions. You'll always find someone here to talk to and to help you through a tough day or days.

    I'm concerned with the nausea and vomiting that you're experiencing. If that's happening, then you're losing some of the pain relief from the medications you're taking. Can you get some anti-nausea meds from your doctor? I know that percs made me so sick that I stopped them almost immediately after my surgery. I just think this is something that you might want to address to get the maximum pain relief from your medications.

    I'm glad you found us and hope you find friends here that help you. This is a great site, not just the forums, but the articles as well.

    Take care and please let us know what you decide and how you're doing.
  • Thank you, "C", HBmom, Mrs. P, and Cath for your warm welcome. I hope I'm able to find strength to keep moving forward. Many time, tears have blurred my vision, and I just stared at the ceiling. Now, I can stare at the screen and continue to find hope.

  • Hi Pepper,

    I am sorry to hear you story. If you see my sig line, you will see I too have a strange story. What I will suggest is that you have a pain psychologist input before you try the surgery. You know the risks are high and may not improve your situation. So, you have nothing to loose!!

    I spent 3 weeks in pain management and accessed the psychology very late. To be honest I think I was scared but it was a good thing for me. My pain is actually increasing currently and I have trouble weight bearing. BUT, I cope on a daily basis better - yep I still have my godforsaken days but on the whole I am more accepting of where I am. I think any decisions for more surgery will be viewed very differently now my head is clearer.

    It isn't about examining your psyche or suggesting that pain is psychological but understanding how your inner voice works and how you can gain control back inside yourself. If you want more info PM me. I won't hijack your post here.

    I was mentally wrecked after my 3 surgeries and traumatised. Not a good state of mind for deciding whether to opt for another risky procedure - I hope it helps. Good luck what ever you do!!
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