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post-operative NIGHTMARE

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:30 AM in Lower Back Pain
New here, but desperate.
I had a fusion with hardware November, '08...(L4-5). All was great until day 15, when the nightmare began. Deep wound staph infection. I got sick on a Thursday, called emergency on-call Doc that night. I got the 'blow off' and was told to contact my surgeon the next day. By Friday, I was incredibly ill. Saw surgeon @ 3:00pm, at which time I was burning with fever and barely able to walk. He said I likely had an infection and proceded to prescribe Keflex, order blood cultures for that day, an MRI on SUNDAY, and probable surgery on MONDAY. I was thinking this was a bit too conservative, and I thought my daughter was going to deck the guy for his nonchalance.
By Saturday afternoon I was totally delirious with fever, and unable to walk at all. That night at bedtime I felt something weird on my bandage and had my fiance check it out. He was horrified to see copious amounts of brown pus oozing through the bandage and literally running down my back.
Off to the emergency room. Was admitted and had surgery Sunday morning by on call doc, who didn't know me from Adam. My surgeon came in Monday and acted like it was nothing. Tuesday morning I was put in isolation and told it was MRSA. Two days later, and after much freaking out, I was told it was MRSA's 'little brother', MSSA.
5 days later, I was discharged, even though I was still horribly sick, and had a catheter as I was still unable to urinate, and forget having a bowel movement. No sense of feeling in either area. Had a PICC line and consequently had IV antibiotics administered at home for NINE WEEKS. ($1000 a day...Thank God for good insurance. The hardware alone cost $55,000.) I am on 1000mg of oral keflex for the remainder of the year.
Now, nearly 6 months later, I am still practically a shut-in invalid. I am in constant pain in my back and right leg. Have been on and off a cane for several months. Finally stopped monkeying around with the original doc, as he was no help. Only temporary pain relief was joint injection of steroids. (almost a week of different, but less severe pain.)
I am totally unable to return to work, cannot walk more than 5-10 minutes, unable to sit for more than 30 minutes, spend 85% of my life lying down (still in pain). I'm still in a very aggressive back brace, and cannot function at all without it.
I have applied for disability, as it is clear that working again is most likely never going to happen. I am not your typical disability candidate (sorry for the stereotype, but visit my local SSA office and you will see for yourself what I am talking about). The process is completely ridiculous, and my 'representative' is a total joke. It may be years before a determination is made, meanwhile we lost 50% of our monthly income.
I subsequently spent another 5 days in a mental health unit due to severe depression and on suicide watch simply because I don't know how to live with this situation. All I want is to be better and to resume my normal life of working, gardening, home improvement and all my normal activities.
I have finally been referred to a specialist with this kind of scenario at the University of Washington, and see him May 26th. I am terrified to be optimistic, but trying to hang onto some thread of hope.
To add insult to injury, I cannot take opiods because they all cause severe (puking) migraines. Darvocet has been the only thing I could tolerate, but I'm sick of living on pain meds. Finally went against all advice and am living on Ibuprofen, with occasional rescue darvocet and rare Flexeril. Also have been given Ativan for anxiety, which I have never in my life experienced. Was given Lithium for the out-of-control depression, but got Lithium Toxicity and will NEVER, EVER go near that crap again.
I truly am a totally normal person, with what used to be a normal life and am so desperate for help I've become pathetic. I feel like a total loser and a drain on my fiance. We can't even get married as planned, as it may affect my disability status.
Isn't this just a hornet's nest of a life?

Any help?
T in Tacoma.


  • Hi, It sure sounds like you've been thru it all. I don't understand how you got such an infection. Doctors will always blow you off if you're not persistent. Getting on disability might not be that hard if you can get your doctors to write notes stating that you cannot work. Then it will be 1 year if you do get on before you'll see a check. One thing that you might try is calling the hospital and asking them if they have someone there you can talk to. Sometimes getting out the anger and frustration help when you tell someone. I had back surgery 15 months ago L3-S1 fusion. I'm still in pain. I'm on Vicodin 5/500 and Skelaxin. Since I'm still in pain, I;m having a CT scan to see how the screws are and if everything is fine. I too get depressed when all I can do is maybe cook dinner. Forget the walks I thought I'd be doing by now. I love gardening, but forget that now, I can't bend over and reaching over and over kills my back and lands me in bed the following day. The best time of no pain is in bed. So, if you can, take it one day at a time. Hope this helps
  • Welcome to the board. I am very sorry for the reason you found us.

    I'm sure you are feeling very alone right now, but, believe it or not, there are others on this board who have been or are going through the very same thing as you. Hopefully it will help a little bit to be able to talk with those who know and understand what you are going through.

    Do not give up. There will be someone out there that can help you with your spine issues and get you back on your feet, so to speak. Hopefully this new doctor will be the one, but if not, there are many others out there. Sometimes you have to persevere and keep at it, but you WILL get better.

    Please keep posting with your comments and questions. This is a great place to come for answers, support, or just to vent!

    Hang in there!!

    xx Gwennie
  • Hi T,

    Well you certainly have been through quit a ordeal. You will find here many compassionate members who really understand what you are going through. Although I don't suffer from low back, but rather cervical i know that feeling of worthless you are going through. Hang in there maybe this doctor will have some ideas to help you endure through this. I think you are going to find the SSDI process similar around the states. I myself have a claim pending and used the online process in place of going in to the office. To put it nicely it is sure a humbling experience. Not having income is certainly depressing all by itself without the pain added to it. Have you tried any bio-feedback since you are unable to take pain meds? I told someone the other day if someone told me to drink horse piss and it would relieve my pain i would fill the cup myself? So I hope this new DR can get some of your pain under control.

    The one thing i have learned is there is a new normal me. I like to call it my baseline pain. I'm coming to grips with things I won't beable to do any longer and learning new innovative ways to do things all the time.

    Anyway I wanted to say welcome to spine-health and if you ever need some company check out the chat room. There are always members there. They laugh, joke and cry all together. But one thing they can all relate to your situation. Once again welcome to spine-health.
  • Welcome! I'm sorry you had to find us, but I'm super-happy that you did! I understand what you are feeling although to a lesser extent since I'm refusing surgery at this time... I struggle everyday to find something I can feel proud of, even if it is taking a whole shower while standing or making it out of bed and to the couch. I used to be a VERY competetive athlete, so this whole adjusting thing for me has been quite the process, but I find that talking to people helps a lot. This site and others have proved helpful to me more than I can express, it helps to know you're not alone, and I started seeing a counselor when I found myself becoming bitter with my situation and constant pain. It helped me a ton, so I'd definitely recommend it to anyone! It really helped just to cry and get it all out with someone who wouldn't get frustrated or be judgemental. We can work through this together! I'm always here to lend some ears/eyes and show you that you are not alone. Don't ever be afraid to message me, I can relate and would therefore never judge. Have you tried the Fentanyl Patch? It goes directly into your blood through your skin so if your opiate problem is in the digestion, this might be a viable solution. I hope only the best for you! Keep pushing through, we can do it together. Keep talking and getting it out with safe, non-judgemental people like us or a counselor, it really does help to get it all out... Remember that you are not alone!

    Much love and understanding,
  • from what i have heard about fusions ..i am glad that i have refused one ..they sound like hell ..sorry that you have been to hell and back and i hope that you are recovering well.
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