Hi. I received an LP in March 2012, when I was hospitalized for suspected Gillian Barre Syndrome. During my hospital stay, I also received 5 IVIg treatments. Once discharged it was determined that I did not have GBS (due to the NCS), however, even while I was in the hospital HORRIBLE headaches started.
I have been complaining about the horrid, never ending headaches ever since, to my pcp and my Neurologist, with no answers. Finally, just the other week, I mentioned the headaches to the Neurology Nurse, who said I likely had a spinal headache (yes, for 10 months!).
So, 10 days ago I had a blood patch (EBP) done in the L4/5 area through the ER. After resting flat awhile, the spinal headache was gone. However, since then an even more debilitating condition has developed.
About 4 days after the EBP I developed extremely severe pain in my lower back, down into my butt and tail bone, and into my right thigh. If I moved, say even just to re-position myself in bed, I would automatically scream due to the pain. (I have NEVER done that before in my life!)
This back pain is unrelenting, and I must use a support cane to stand up, and to even walk, due to the shooting and stabbing pains.
A week and a day after the EBP, I went back to the ER because of the severe back et al pain. It seemed they did not know what to do with me. (This is the same ER where the blood patch was done, and the ER associated with the teaching hospital where my Neurologist is. He is thinking I have MS..... another long story). They kept asking me if I'd fallen or done something to my back. They couldn't seem to make the connection between the severe back et al pain and the EBP.
I ended up explaining to them that sometimes this kind of pain can be an awful "side effect" of having a blood patch. I do know that when they were putting the blood in (during the EBP) I mentioned that I felt PAIN in my lower back and right leg, but they rephrased what I was feeling as "pressure". Also, the anesthesiologist who was trying to get the line into L4/5 seemed to be having a bit of a difficult time.
So, at the ER, they did a basic neuro exam, and finding no glaring abnormalities, gave me an IV of Toradol and then discharged me w scripts for oral Toradol and Vicodin.
That was two days ago. I have been taking the pain meds religiously, and still am in incredible pain. I actually ended up staying the weekend at a friend's house w my 8 yr old son (hubby is currently working out of state), as I didn't know how I'd care for him, myself or what condition I'd be in.
Even this morning, getting out of my friend's car in the church parking lot, I again screamed (unwittingly) because of the pain.
Though I've not spoken w my neurologist, he conveyed to me thru his nurse via telephone that he thought maybe the blood from the EBP (they gave me a full 20 mLs) was irritating the nerve roots and it would soon "settle down".
Nothing appears to be settling down for me. So long as I lay perfectly still, I am pain free. But, the moment I move my legs or lower back, or heaven forbid I pull my knees up towards my waist, I get screaming pain. Stairs are awful- going either up or down! And this is, again, with regular doses of both Toradol and Vicodin. If I didn't have my support cane to use, I would have fallen multiple times with this severe and acute pain.
So, here's the question. When can I expect this awful lower back, tail bone, butt and right leg pain to go away? Also, how do the doctors know (well, I know they DON'T know) that I don't possibly have a hematoma in my lumbar region (which could be causing this??)? No tests were done and they administered the pain meds on my say-so.
(I am not a doctor, but do work in a (different) hospital in a para-medical master's level position).
At what point should I be returning to the hospital if this pain does not cease and desist? They only rx'd me 40 Toradol pills (every 6 hrs prn for pain) and 24 Vicodin (every 6 hrs prn for pain). Honestly, that doesn't seem like much, as I've already utilized 8 Toradol and 6 Vicodin just this weekend (and I haven't taken any yet this evening).... and am still eliciting the occasion screams of pain. (Oh, and bending forward to pick something up.... forget it. Too painful to even be possible!)
So, while I'm glad the headache is gone, I feel like I've made a terrible trade...... at least I didn't have to "sit" on my head, or use it to "walk around" or "stand up". I could tolerate the headache- barely.
This severe lower back et al pain- I'm not sure how much longer I can tolerate it EVEN with the medications.
Suggestions? Thoughts?
PS- I was scheduled for another LP in 2 days from now to look for MS (o rings)..... yeah, it's been postponed!! No freaking way am I having another LP right now!!