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Blood patch cured headache, but now severe, immobilizing lower back pain!
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!!
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!!
You NEED an MRI to see if the patch formed a clot that did indeed stop your spinal fuild draining (which was causing your headache) but ALSO formed a clot that was pressing on your spinal cord, which sometimes happens and causes exactly your symptoms. INSIST on an MRI and be your own best advocate. If you have to say, "I am not leaving here until you order and MRI" then do it. You deserve relief.
When i was in labor the doctor gave me a epidural. He hit something & I felt it! Like the way you grind your teeth. I felt it in my back like he grind something in my back! I had a blood patch done right after my Emergency C-section for the extreme headaches! The headaches went away instantly! The lower back pain did not! There have been time if I sit to long I get up hunched over from pain and have to straightenter my body up slowly. I have gotten stuck while bent over not being able to get back up.I would cry driving home from work leaving a customer home from lifting a elder. Just getting in and out the car was horrible! I believe i would get inflammation in my back from straining it. I was living of Aleve, Advil, Ice Hot and Epson salt and not being able to not make any movement in bed as i slept from extreme pain. Just trying to get myself ready for the next day for work! I finally got to quite my job Thanks to my great boyfriend of 4 yrs Now! There where times I couldn't get out of bed and had to crawl to the bathroom! Even Now i live with pain time to time and try not to strain myself scared ill regret it the next day! You would think I would go to the hospital!
My son is 10 yrs old now! This has been a on & Off back pain experience! For some reason I figured this was normal after getting a Epidural because my mother has had the same problem all these yrs! So I figured it was something I had to live with! Maybe I don't have to? Just the thought of someone sting my back freaks me out! I see your post is from 2014 any luck with your back pains getting better AmyKate??
My son is 10 yrs old now! This has been a on & Off back pain experience! For some reason I figured this was normal after getting a Epidural because my mother has had the same problem all these yrs! So I figured it was something I had to live with! Maybe I don't have to? Just the thought of someone sting my back freaks me out! I see your post is from 2014 any luck with your back pains getting better AmyKate??
I had a blood patch 2 days ago, and iam experiencing pain in my tailbone is that mean doctor missed the dura and the blood set on my nerves or it was too much blood?
I had a bloodpatch after a weeklong debilitating headache following a LP. The headache was so severe they kept me hospitalized for a week. They hoped it would resolve itself. After that week, the blood patch worked like a charm. I did however have the nearly debilitating back pain that took many weeks to ease up. The first few weeks out of the hospital I couldn't bear any weight whatsoever including just a glass of water or a yogurt. Any weight bearing made my back feel like it would crumble to pieces. I could barely walk and had intense pain, weakness and neuropathy. I had to make some lifestyle changes. Barely sat, bought an orthopedic cushion which I lugged around everywhere for six months. Also, for several weeks I felt an echo of the spinal headache Everytime I stood up too fast. It has now been seven months, the headache s are completely gone, and the only pain remaining is minor sensitivity of the tailbone. I mean this as a message of hope! I thought I would never be able to walk and sit normally again, but with time I am almost totally healed. Be patient and listen to your body. I have only just begun physical activity again (very light swimming) after 6 months
I too had a LP and severe headaches followed. 8 days later, I went to the ER where anesthesiologist attempted a blood patch but I fainted and they stopped the procedure. 2 days after that we attempted again successfully however, I almost fainted again but it was after the procedure and they had me on monitors so they knew what to do to avoid the fainting. The headaches stopped immediately but I am having severe back discomfort and was wondering how long this would last. I am now 2 weeks after the LP and I really don't know why I had such a hard time with it. Does anyone know how long this back pain will last?
2 Comments
I had an blood patch after giving birth due to leaking spinal fluid from the epidural. This was two weeks ago and although the headache disappeared within a few minutes of the bloodpatch, I'm in terrible pain right at my tailbone and down my right leg. How long will this last? I am assuming it's from some of the blood leaking and pooling at my tailbone and irritating my nerves. My dr says I will need to go to a spine specialist and they will most likely give me an injection. I don't like the sound of that so I'm trying to wait it out.
Did you have random numbness too?? That comes and goes in different spots but all in your lower body??
Hi there
I'm having a similar experience with pain in tailbone buttocks and thighs. Sneezing is excruciating and I have pain in my tailbone when I turn my head right or left. I am also light headed a lot - and it all happened after a blood patch 5 weeks ago.
I am better than I was but improvement is infuriatingly slow. Did your symptoms go away on their own or did you get treatment? How did they know it was congealed blood at the nerve roots? Nothing has showed up on my MRI and my doctor is stumped.
So sick of this and would appreciate your advice!
Ro
I'm having a similar experience with pain in tailbone buttocks and thighs. Sneezing is excruciating and I have pain in my tailbone when I turn my head right or left. I am also light headed a lot - and it all happened after a blood patch 5 weeks ago.
I am better than I was but improvement is infuriatingly slow. Did your symptoms go away on their own or did you get treatment? How did they know it was congealed blood at the nerve roots? Nothing has showed up on my MRI and my doctor is stumped.
So sick of this and would appreciate your advice!
Ro
It took several months for the back pain to resolve. Turns out they "missed" where they put the blood patch, putting all the blood outside the dura (the covering of the spinal cord n brain) n thus the blood congealed at my nerve roots, causing the horrendous pain.
As it is now July 2014, this situation is resolved long ago, but it did take from the patch in Oct 2012 till Jan 2013 for my body to break down n absorb the misplaced blood. Once that happened, I was back pain, though not headache pain free.
Long story short, in Sept 2013 they finally diagnosed me w Post Concussion Syndrome- what all the NFL fuss is about. Apparently I hit my head n concussed myself in Jan 2012 n forgot about it ( duh ) n that's what started all the neurological probs n the headaches at the back of my head.
I've since been seen n worked w the University of Pittsburgh Sports Concussion clinic n between medications n nerve blocks in my neck, a lot if my symptoms have settled. No more horrendous headaches, and no scary diagnosis like MS. All this from a concussion. I've had concussions before n since, but for whatever reason, this was the one that "did it".
I'm now doing much better tho still have my struggles at times. I just had surgery to remove a buldging disc from the bottom of my neck that was strangling my spinal cord, again causing balance n grip issues w dropping things n the doctor said that I was at major n immenant danger of becoming a quadriplegic.
So ve the surgery just over 4 weeks ago, it's like I'm almost myself again. Yes, I still have fatigue n definite cognitive losses (word finding... Spelling problems... Using the wrong word or mixing them up) and I just lost my full time job, after they kept me on w med I surance (thank heavens) but no pay for the past two n a half yrs.
So now things are much better and I "start" my new life, whatever that may look like. It was quite a saga, but glad to be in recovery mode now and doing well. I'll always have to live with the cognitive effects n losses from the brain injury (I injured several lobes of my brain) but life is getting better n will continue to!!!
Thanks for asking n listening. Amy Kate
As it is now July 2014, this situation is resolved long ago, but it did take from the patch in Oct 2012 till Jan 2013 for my body to break down n absorb the misplaced blood. Once that happened, I was back pain, though not headache pain free.
Long story short, in Sept 2013 they finally diagnosed me w Post Concussion Syndrome- what all the NFL fuss is about. Apparently I hit my head n concussed myself in Jan 2012 n forgot about it ( duh ) n that's what started all the neurological probs n the headaches at the back of my head.
I've since been seen n worked w the University of Pittsburgh Sports Concussion clinic n between medications n nerve blocks in my neck, a lot if my symptoms have settled. No more horrendous headaches, and no scary diagnosis like MS. All this from a concussion. I've had concussions before n since, but for whatever reason, this was the one that "did it".
I'm now doing much better tho still have my struggles at times. I just had surgery to remove a buldging disc from the bottom of my neck that was strangling my spinal cord, again causing balance n grip issues w dropping things n the doctor said that I was at major n immenant danger of becoming a quadriplegic.
So ve the surgery just over 4 weeks ago, it's like I'm almost myself again. Yes, I still have fatigue n definite cognitive losses (word finding... Spelling problems... Using the wrong word or mixing them up) and I just lost my full time job, after they kept me on w med I surance (thank heavens) but no pay for the past two n a half yrs.
So now things are much better and I "start" my new life, whatever that may look like. It was quite a saga, but glad to be in recovery mode now and doing well. I'll always have to live with the cognitive effects n losses from the brain injury (I injured several lobes of my brain) but life is getting better n will continue to!!!
Thanks for asking n listening. Amy Kate
I am having the same, exact problem as the initial poster, except I received dilaudid and toridol. I went to the dr today and had a normal X-ray. Ct scan is tomorrow. I don't care how normal they are, I am in severe pain and cannot function like this. I can barely move. :(
Now being June 2014 how did this turn out. I just had the same thing 3 days ago...so much standing, sitting or bending pain..wish I had the headache back..how long did your last and did they have to fix it or did it fix itself?
Hi Amy, just saw your post. I also had an LP a couple of months ago but I dont remember the anesthesiologist telling me that back pain was a possible side effect of the blood patch I had after the LP for my headache.
The only thing I can offer here is that if I were me, I would goto another hospital not affiliated with the first hospital and get a fresh set of opinions.
It sounds like you are dealing with a lot right now, especially with your young son. Set a date that if things don't seem to feel any better, you are going for another opinion. Sometimes we just need to be the squeaky wheel.
Feel better.
The only thing I can offer here is that if I were me, I would goto another hospital not affiliated with the first hospital and get a fresh set of opinions.
It sounds like you are dealing with a lot right now, especially with your young son. Set a date that if things don't seem to feel any better, you are going for another opinion. Sometimes we just need to be the squeaky wheel.
Feel better.
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