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Epidural Abscess very complicated - please read!

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    Epidural Abscess very complicated - please read!

    Hi Everyone,

    I had an epidural abscess in April of 2009 as a result of a staph aureus infection. I've been paralyzed since that time at the T4 level (incomplete), my story differs from the norm, and is very unusual. I've never heard a story like my own, so I'm hoping someone has.

    In 1992 I contracted primary viral encephalitis, while working in ICU at a hospital. I was in the hospital for 7 months, and suffered debilitating migraine headaches that lasted 17 years. I managed to work on and off for 17 years, started a birth doula practice 10 years ago - all while raising 5 kids. (I had the first 3 before, and 2 after). I had to stop working as a doula in April of 2008 due to the most extreme pain I've ever had in my life. I went into hospital by ambulance 4-5 times and was told that I had back strain. I was regularly seeing a pain specialist, neurologist, and family physician. As you can imagine, with all the trips to the ER - I was probably labeled a drug seeker. (Even though I had letters from all my Drs ordering pain meds) I was finally diagnosed after the doctors seeing compression fractures in my back due to osteomyelitis (infection in the bone). The bones in my back had crumbled due to the infection, and my red cell count was so low that I needed 10 bags of blood and plasma. My white count was so high, that the infectious diseases doctor said he had rarely seen a count that high. I had to have 9 bones in my back removed - and have 15 inch rods, along with plates and screws to hold my back together. I was on IV antibiotics for a year, and started to notice that after about 4 months my headaches started to diminish. The headaches were obviously caused by the staph aureus infection. Over the years I kept getting staph aureus infections in my lungs, and had many staph aureus skin infections. My headaches are now gone, so it's a sad irony that it took me being paralyzed to figure out the problem. I spent 10 months in the hospital.

    I also suffer from extreme stasticity (I'm told because of the extreme scarring around the nerves), and am having a Baclofen pump implanted on April 14th. I'm wanting more information on that too.

    I'm hoping to connect with someone who has experienced a similar situation, or can give me any kind of guidance.
    Last edited by ktv; 12 Mar 2011, 11:40 PM.

    Welcome, ktv. What a long, painful experience you have endured! I don't have medical expertise or guidance to offer in the area of epidural abscess, but I do want say "hello" and wish you a very fruitful and blessed rehab. I am glad that you now know what the problem has been for all these years, that your headaches are gone and that you have a viable treatment plan, going forward.
    MS with cervical and thoracic cord lesions


      Welcome --ktv, you do have a very unusual story. I am amazed you could even work. Were you a nurse and contacted the infection?

      You have found a good forum that you will get information, support, and friendship.

      I am 4 mo post op from auto accident, broke my back while in the vehicle with my daughter and her husband. He went over a set a RR tracks a little too fast and I hit the headliner of truck and heard my back crunch. I had surgery, had a corpectomy , fused at L1-L2, had some complications and after 2 mo in hosp I came home right before Christmas.

      Don't give up hope because the ER DR. told my children I would never walk again, I am walking with walker and around house I walk, I look like a weebles, but one step at a time.

      Good luck to you.
      JeAnNE L1Burst Fracture inc. 11/5/10

      Live Well--Laugh often


        Have you already had your Bclofen trial? This is done first by an injection of Bacofen in to the spine. Comparisons are mde of spsticity and spasms before and after the trial. If successful the implanted pump will then be put in. You stay in bed around 24 hours and then slowly in to chair with hellp. There are some activity limitations when the catheter and pump are first put in so it caln heal nf not become disodged. The rate of the amount you receive will be adjusted every two days or so to get you to the right dose.
        You can go to the website and read bout the pump. There should be alot of teaching about things to watch for. You need to carry an emergency card with you.
        You will need refills when the reservoir in the pump gets low but atleast every six months because the medication can't stay in there longer than that.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          Thanks Jeapow!

          I've been a healthcare professional for 27 years, that owned and operated a birth doula practice. A birth doula is a childbirth attendant. I practiced mostly in the midwifery field, but also worked in all of our mainstream hosptials in the area. I also am a childbirth educator, and a lactation consultant. Wow, your injury is really recent! I came home last January after being in hospital for 10 months. How are you adjusting to having a SCI? It certainly sounds like your determined ! It certainly is life changing! I'm paralyzed from my upper chest down, and am unable to transfer. I'm in a power chair as I also have a fused left shoulder with very limited mobility. I'm extremely spastic, so that really affects my daily life. I can't bend forward, twist, have anything on my legs short of a very light fleece blanket (summer and winter) due to any light touch or movement sending me into a huge spasm that's very painful. So it sucks! Anyway - not to go on and on about me! Thanks for messaging me!



            Yes, I've had the Baclofen pump trial, and it went amazing! It was such a profound difference! I'm having my surgery on April 14th. My situation is a little complicated though. I have IV access problems, so will be needing a central line. For the trial the Neuro-Anesthetist tried to find a peripheral vein using ultrasound. He couldn't even visualize one! So he considered a femoral line, but when he looked with ultrasound my vein sits right under my artery on both sides - so they can't use that. Then when they decided to do a Jugular central line it was so difficult and there was so much scar tissue that it took hime an hour and a half to get it in - plus the Lidocane really didn't work, so I felt the whole thing. Needless to say, it was a nightmare! I've had so may PICC lines that they worry about access due to scar tissue, so that leaves a sub-clavicular. I've had one sub-clavicular and it was horrendous going in, as I had the Lidocane issue then as well. When they finally did the LP and injected the Baclofen - it worked perfectly! So I'm hoping if we can just get through the logistics of the surgery, that the end result will be worth it! I live in Canada, and the pump I will be getting will be a Syncromed pump, not a Medtronic. Thanks for your reply.