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Caude Equina now Staph - when will it end?

Feeling really bummed tonight and wondering if this is going to go on forever.

I'm 40, was in great health, lean and strong, a mom to 2 young kids.

2 years ago I had a sciatic nerve flare up and it was awful. I was treated like I see many of you were, like a junkie when I asked for pain meds.It made me fear being taken seriously by others. And I strictly recalled that doctor saying "Why would I give you pain medication for what YOU have?". I felt insignificant.

Well, 6 weeks ago I developed the worst pain of my life & laid in bed for almost a week terrified to move. I'd crawl to the bathroom crying all the way, rest, then cry on my way back.

A few days later I went totally numb. This was preferable to being in excruciating pain, but it turned out I needed emergency surgery for Caude Equina (not sure what the surgery I had is called). The RN said it was THE largest mass she has ever seen in over 100 surgeries. Like someone else said it felt like vindication because the original docs were so awful to me. However, having had a lapse in health insurance, nothing about it was very funny.

2 days after the surgery I felt great. But 10 days after I developed the same excruciating pain and had to get an ambulance to take me to the emergency room of the same hospital I had the CE surgery.

I ended up staying there for 7 days in unbearable pain - it was the most disturbing week of my life. No one believed that I could have had complications from surgery (which blows my mind). They simply thought I was a junkie and gave me no pain meds. I cried and screamed for 5 days, they called psych on me (which I was fine with knowing I'm totally sane). Psych knew i wasn't crazy. I guess carrying on and crying and begging for pain meds are signs of being a junkie, but they are also signs of being in killer pain and I was not given the benefit of the doubt.

On day 5 the infectious disease doc came and told me I had a blood infection - staph - and may be in the hospital for many weeks. Long story short, my original surgeon did not like the thought that he may have been the cause and got me discharged the following day.

It's been a month since then - my fiance injects me with antibiotics each day, but I keep feeling worse. I can only walk for a few moments (with a walker) before my lower body burns with pain. My surgeon said my x-rays look great, but I can't believe something more serious isn't happening. He didn't really check the results from the drains. The infectious disease doctor who I'm seeing Monday will hopefully have more news.

I'm supposed to get married this month and won't do it in a diaper out of pride! Tonight I had a meltdown wondering if this is going to last forever - can't dress my kids, can't drive, can't even walk, can't cook, I feel useless.

I have soft hip bones now and wonder if they will ever heal. I have to keep getting 5 days supplies of inadequate medication and heading to the doc to prove I need more. I honestly HATE the stupid drugs and just want my body back :-(

Any advice?



  • MollyAkMMollyAk Posts: 114
    edited 10/11/2013 - 5:42 PM
    Hi, I'm sorry to hear you are going through this. Feeling unheard is miserable and frustrating. I don't want to scare you but staph is nothing to play around with. My father in law had a staph infection and severe back pain and it took awhile for them to find the cause of the pain. By the time they did, it had eaten into his vertebra and he had to have 3 of them removed. The entire vertebra, they spanned the gap with bone from the bone bank and bolted the mess together. A decade later and he is doing great. He's here now in fact to offer support to me during my fusion surgery. The infectous doctor will hopefully listen better. If not, is there a different hospital or doctor you can go to for another assessment?
    L5 S1 MicroD - August 21, 2013
    L5 S1 Fusion - October 17, 2013
    44 year old
  • stenosisRosesstenosisRose Posts: 489
    edited 10/11/2013 - 5:44 PM
    Oh please go for another opinion.

    Make sure the next doctor you see does NOT practice in the same hospital as your other surgeon.

    " there is a protect your buddy system" when doctors have privileges in the same hospital (hospital politics)

    You need a totally different set of doctors for new advice

    God bless
  • In Australia I am pretty sure they keep you in hospital if you have a staph infection. I met a young boy who had staph and had been in the hospital nearly 7 months. You really do need to go to another hospital and get some better treatment. It is insane letting you be discharged with active staph.
    I would be seeing someone else or my GP. Don't know where you live but staph is so dangerous. Please take everyones advice and look for help somewhere else.
  • thanks for responding. You are so right about the hospital docs protecting each other. The Infectious disease doc was called in as a specialist and I know he is honest. I'll let you know what happens when I see him Monday.

    Both the x-rays and blood tests came back showing improvement - why does the staph hurt sooooo bad and just seem to be getting worse?
  • I have had MRSA twice and no pain!

    Are they sure it's STAPH?

    Where is your pain?

    Is it by your incision?

  • I don't know why I am in so much pain, that's what's so upsetting. The pain is generally located at the site where they did the surgery, but lately it seems to be attacking my legs, butt and hips.
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