never had a blood patch (never had an LP) but I did look it up after asking my dad about it. (he's a nurse anesthetist) This website had some interesting information.

Cherie - I had the blood patch. It was not the nicest thing ever, but it got rid of the headache pretty instantly. My back hurt like he!! from it, though. That was not bad after the headache, though. I did almost pass out during the blood patch. I won't lie to you because you asked about it and you should know.

They take a fair amount of blood out of your arm - just like a blood draw, but it is just one big tube instead of a bunch of little ones. I don't know the exact amount, but it looked like a lot to me (probably wasn't nearly as much as I thought, though). Then, they have you curl and try to go in near the original site of the LP and they inject the blood into the epidural space to get it to clot up the site where it is leaking.

I got a vaso / vagal response at one point and got hot and cold and clammy and nauseous and nearly passed out. Once that passed (I breathed through it like labor) I was fine. I laid down for a few minutes and miraculously, the headache was just gone. My back hurt for a few days, but that was much better than having that headache.

I think if you can keep your daughter real calm and keep her from looking at the blood, she will do fine. In the end, it should eliminate the headache.

Thanks Erin and Holly,

Well, I wonder if that is the right procedure then, Holly . . . :confused:

She has the headache, but pain relief meds seem to take that away enough for her. Her big issue is with the back pain, in that she can't even lay on it or be touched.

Do you know . . . if it is not the headache that is the biggest problem, does it seem the blood patch might not be the right solution? Is that just used for the headache, and for the back ache it is just a matter of time (i.e. nothing they can really do for that)?

Cherie

I'm not sure about the back pain, Cherie. With me, it was all about the massive headache everytime I sat up. I didn't have a lot of back pain with the LP.

I didn't have back pain until after the blood patch because they put all that blood in there and it felt like pressure.

Here is a description I found online about post lumbar puncture headache (PLPH):

PLPH is typically described as dull or throbbing, frontal or occipital in origin and radiating to other areas of the head. Its most unique, often diagnostic characteristic is its postural nature; standing exacerbates the headache, while lying down partly or totally alleviates it. Headshaking, coughing and jugular compression worsen the symptoms. Associated complaints may include nuchal pain and stiffness, low back pain, diplopia, tinnitus, nausea and vomiting.

It does mention low back pain in there. So, maybe that is related. See if this description fits your daughter.

Mine felt like my head was going to explode if I sat or stood for more than oh about a minute. I got very nauseous and dizzy. I basically felt like I was going to die until I got the blood patch. Then, I felt much better and got some pain pills to fix the back pain.

I tried the caffeine route first. Then, when I went to the ER, they even gave me an IV of 500mg of caffeine. That didn't help. I just felt sicker and jittery to the point where I felt like I could levitate off the table all while my head was going to burst.

Did they check her for an abscess at the injection site?

Cherie - Man, your poor DD! I keep checking the your thread in the fibro forum so I missed this one.

I will keep your dd in my prayers. Update us when you can.:hug::hug:

Hi Cherie. I can't offer any advice on the LP, never had one. But I DO know that you're supposed to lay down afterwards, and that nurse was an idiot! I'm sure there was somewhere your daughter could have laid down! I hope she feels better really soon.

She sounds like a real trooper and very brave. I loved her three wishes, and to me anyway, it sounds like she's a cool, generous, well-adjusted kid.

I'm praying for the both of you. I hope you can get some rest amid all of this!

I am not a doc, and I only have my own LP experience to go off of, but the blood patch is typically done to stop seepage of spinal fluid from the LP site. The seepage of the spinal fluid causes low intercranial pressure, which allows the brain to swell slightly, which causes the massive headache. If she is having back pain but no headache, I would not immediately think she needs a blood patch. I would be thinking more along the lines of an infection or swelling of some sort at the puncture site.

In my case, they had to try twice to get the LP done, because the first lady that tried couldn't get the needle past my back muscles. She got it through the mucle and to the spine, but couldn't get into the spine, because every time she would move the needle, my back muscles would spasm and lock the needle down. I had to leave and come back the next day and have a different doc do the puncture. My back was quite sore from the 1st attempt, but it wasn't THAT bad. My headache kept me down for a little over a week, but the back pain went away after about 3-4 days.

Is there any possibility that the back pain is being caused by how much time she has spent laying down and what position/furniture she is laying down on? If she is in a very soft bed or on a couch, it could be that her back isn't getting enough support, which can cause its own set of problems if you are laying down for several days straight.

BTW...T&P for both of you and I hope it gets better soon!

Thanks again everyone.

I think we are making some progress here . . .!!

I have talked to the Children's Hospital nurse to the neurologist, and she was very confused. Apparently they never run into any problems from LP's done on kids, or at least it is so rare she didn't know what to say. She is chasing down the neurologist now, trying to find out what may have caused the back respond this way.

She hadn't been up and about (other than that stint in the hospital on Sat), all weekend. She would get a headache after the pills started to wear off, but as long as she stayed laying down, the headache is only an issue about every 3 hrs.

I had that headache with the botched LP, and it was CONSTANT, no matter what they did or what drugs they gave ... so at least her's is nowhere near as bad as that anyway. The other time I had it (with my 2nd epidural), I had a newborn to care for so I didn't particularly notice if there was any pattern. It went away on it's own after several days though.

So, she made it from about 7:00 last night, till about 9:00 this morning, with only two adult advil. I had to give her morphine when she woke up, and then 2 X Tylenol 3 at 1:00, but that is a BIG improvement over yesterday. She actually got up and had a shower today, but that's it . . .

As far as the back ache, I don't think it is related to the way she is laying, because it was hurting before she started laying around like this. Also, it hurts very bad to even to touch the area of her spinal cord with a soft stroke. The pain is not exactly where the needle was inserted, it's actually above that about 3 inches, up about 6 inches, right in the cord area and a few inches on either side. The doc didn't notice any swelling, leaking, or warmth, so he didn't think it was infected or anything . . . which makes sense too now that she is seeing some improvement.

So, I'm waiting on the nurse, and we'll see where we go from here.

Her spirits are pretty good, all things considered . . . well at least up until the pain relief wears off. :eek:

Cherie

Thanks for continuing to post these updates, Cherie. We're all here with you and for you on this journey. I really hope everything gets back to a relatively normal state and that answers will come soon. Your daughter sounds like a trooper and as for her mother, well, she is lucky to have you. :hug: