Very Bad Spinal Tap Experience

[cczub1024]

I had my LP puncture on Wednesday and ever since have had severe headaches and back pain. Yesterday my doc prescribed butlbl/apap/caff 50/325/40 with no help. Now I also have what seems to be pressure in my head that is "clogging" my ears, especially on my right side where most of my problems are. I aslo lost conscesness during the procedure. I am waiting for the doctor to call me back as I left a message already this morning.

I've read that they can do a blood patch but am scared to death because of my experience. Please help!!!:

[Jazz-TX]

sorry

You are going to have to get the blood patch. I had two get two blood patches on two different times before it finally took the spinal headaches went away. First time at ER and second from a pain Doctor. Blood patch should work on first time.

I'm sorry you are going through this, it is the worst pain imaginable and to feel scared. Hopefully you can continue to remand flat on a bed, couch, or somewhere until you have the patch.

What I was told by the pain doctor that if you have leakage from the spinal tap and if the blood patch does not work. Every time you get up gravity takes over. The fluid in your skull protects the brain. Basically the brain is making contact with the skull which causes the awful sensation and headaches.

It will get better after the blood patch.

[AnneLouise]

I had a major headache when I had an LP. All I did for five days was lay down and drink lots of water. I had to call off work because I couldn't stand without a pounding headache.

So I suggest you lay down and drink lots of water!

Your body must replace the spinal fluid that was removed and that may take some time.

[90stangg]

I had my LP puncture on Wednesday and ever since have had severe headaches and back pain. Yesterday my doc prescribed butlbl/apap/caff 50/325/40 with no help. Now I also have what seems to be pressure in my head that is "clogging" my ears, especially on my right side where most of my problems are. I aslo lost conscesness during the procedure. I am waiting for the doctor to call me back as I left a message already this morning.

I've read that they can do a blood patch but am scared to death because of my experience. Please help!!!:

I had a blood patch done after a LP puncture, the best thing they ever did to me. They waited a week before they would do it, and I was in pain anytime i wasn't laying down. When I walked into the hospital I was holding my head it hurt so bad. i walked out an hour or 2 later and my sister had asked what the hell did they do, cause I was back to normal no pain what so ever.

All they do for the patch is to take some blood out of your arm, and insert it where they did the LP, but they don't actually go in to the spine just out side of it. What it does is to fill the lower cavity around the spine pushing up your spinal fluid, and getting your brain floating again. The brain not floating is what gives you the headache.

The Blood Patch is your best friend

[mack1z]

Same here

I also had a really bad headache (felt like I had a bubble like a carpenter's level and when I stood it tried to shoot out of my head) after my lumbar puncture in November.

I was afraid of the blood patch and called my neuro to ask when it was time to "give up" and go back to the ER. He recommended that I lay on my back (not my side, not propped sitting up) for at least a full 24 hours only getting up to go to the bathroom.

The next day it was considerably better, but not perfect, so I did another day of back rest and it improved day after day and was gone within another week. I also added a caffeine powder to my water, which also seemed to help.

I continued to use the caffeine power (zipfizz I think) for about 2-3 more weeks.

I hope that you start to get some relief soon!!!

[Dreams008]

I just went through a spinal tap as well two weeks ago. They had a hard time locating the right spot to draw fluid, so I was very stressed and scared. Once it was in, I felt nothing. I was told to take it easy and lay as flat as I could for 48 hrs. I even ate in bed. I had a headache for 4 days, to the point I eventually threw up. I went to the ER and they were conservative about "just" doing a blood patch, and instead gave me fluids by IV with Benedryl and Compazine.

I was confused with the medicine because Compazine is an anti-nausea med and Benedryl is anti-histamine. But, the attending ER Dr said that both are good at treating headaches. That, with the fluids, did the trick that same day. No blood patch needed. They took my blood to check if it clots well just in case, but after about an hour of IV fluids, headache was completely gone. I still drank plenty of caffeine, which I never do, and rested, but I'm glad I didn't push for the blood patch.

My neurologist, head of neurology at the University of Miami, said it's very normal to experience a bad headache and back pain for a few days after, but only 10%-15% need a blood patch. He said our bodies are made to heal and that any spinal leakage should remedy itself. Hang in there. Lots of caffeine. Feel better.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Marie12]

I am so sorry for you

I really am sorry that you are going through that. I'm sure some posters here will try to help you. I was offered a candy bar and coffee at the hospital, but declined both. Hmmm now I read that what is needed after a lumbar puncture is . . . . . . . . .

[Tawanda]

I am thinking in hindsight that we should be laying flat for longer than currently recommended. Unfortunately, it's easier said than done when you have kids, job, housework, etc. running through your mind the whole time. Ideally, you should stay in the hospital longer, but again, who is ever all over the idea of staying in a hospital longer?? In any event, we have pretty much have all had LPs without any long-term effects.

[cczub1024]

Was doing much better for about a week

It's been almost a month since the LP and required blood patch. After the blood patch I felt fine, with no headache and just minimal back/spine pain. I took it easy and stayed on bed rest for another 5 days before slowly working myself back into the ability to go back to work, 1 week post blood patch and approval from my neurologist.

After a few days of returning to work I started with spine pain and slight headaches. I've done a lot of reading, and even though uncommon, this can linger. It's now been almost 3 weeks since the patch and now my headaches are constant and the pain in my spine is becoming unbearable. I have not been sleeping at all since my event in Feb. and know that the lack of sleep is not helping my body to recoparate, but the pain is so bad I didn't get out of bed until 1pm to use the bathroom.

I forced myself to work, as I don't want to abuse my approved FMLA as the doctor didn't put what I tell him for how many days/time out per event I've had to use since the event. I just took my second 7.5/325 hydrocodone today and that is taking just the edge off.

Has anyone else had lingering spine pain after an LP? It's not back pain, it's directly up/down the spine and usually in the mid back area, which is about half way up from the puncture site, so I know it's not from the puncture site itself. I do have back issues, but in my lower back from a previous injury. The neurologist is no help and have only gotten insight from my primary doctor.

Any insight will be greatly appreciated.

[MarkLavelle]

It sounds like you should try your back doctor next. If you don't already have one, I would try a physiatrist.

http://www.aapmr.org/patients/aboutp...ysiatrist.aspx

[cczub1024]

I have a scheduled follow up

I already have a follow up scheduled to see my physiatrist for next Tuesday for my Fibro and am going to bring it up when I see her. Since the event and probabl MS diagnosis from the Neuro they are scared to treat me and adjust any medication.... Since the event I've had my sleep meds stopped (trazadone 100mg, which wasn't doing anything anymore up to 200mg), pain medication (fentanyl patches) cut in half and my cymblta stopped. They had always treated me for my pain/fatigue/sleep and now that they cut out medication, they are afraid to add anything new. This has cause my ability to get any sleep disapear. I get sleep in bursts of 15-45 minutes at a time, several times a night. Last night the spine pain was so bad I took my max allowable dose of two 7.5/325 hydro with a 1000mg ibrophrophren and it only took the edge off the pain and still got no sleep.

Today I feel like a complete zombie and don't remember even driving to work this morning.... I'm on empty and just strugling to get anything done.

[Pipes123]

I get those kind of treatments from my neuro. The physiatrist probably wants you to make that transition.

But, imho, it is completely unfair of them to cut you off. And stopping Cymbalta suddenly is dangerous. It needs to be tapered. I would call my neuro, my gp, the physiatrist, even go to the ER if necessary. It's ok if they want you to change doctors, but this is not the way to handle it.

Melatonin works for me for sleep. I take a lot, but researched first and didn't find risk of adverse effects.

[kelm10]

electrolyte fluid

The place where I had mine done automatically gives a bottle of electrolyte fluid (Gatorade like) after the procedure along with the bed rest.

I had two young kids at the time. I arranged for a friend to be there with me so that I could maintain the bed rest.

You really need to care for your body. IMO, if you have fmla papers filled out, use them. You don't want the papers to be specific about time that you need off. MS is unpredictable. My neuro filled my papers out with the amount of time as varied.

[cczub1024]

Multiple replies

Thanks. As for sleep, I have done the melatonin route and it used to help some along with trazadone. Doing just the ve had me melatonin I don't get any benifit towards sleep. They have had me try the over the counter, extra strenght, double dose sleep meds, and that does nothing either. I can't find is any combination of over the counter/prescription meds that will actually knock me out or keep me out. When I see the new neurologist and follow up with my primary I am going to request a sleep study as my primary has mentioned this in the past.

As for the spinal tap, he gave me no pre-procedure or post procedure instructions. After the procedure I was only flat on my back for 10 minutes in his office before he had me get up and get dressed. I only knew about fluid intake and laying flat because I read up on it prior to the procedure.

The cymbalta I weened myself off as as best I could because I know from other meds of the same class it was a bad idea just to stop. This was done as some quack at the ER said it was seritonin syndrome... Even though I researched and was confirmed it could not be....

For the FMLA, my quack Neuro filled it out for 1 doctor apointment every 2 months (even though I need to see him monthly and see the physiacrist every month) and 2 episodes a month lasting up to 2 days. Since I HAD to return to work on Thursday after being out Wednesday, by law, it would be considered my second event if I took today off.... The current neruo put probally MS on my FMLA but won't give ME a Dx.... Thus, my last appointment with him is the 30th of the month and new neuro starts on May 1st.

I know what it is like to wait on a Dx, as it took me over 2 years to get the Dx of Fibro. I can't afford medically, physically or finicailly to have a Dx and medications. The last year I have watch my function drop close to 50%. I am a slave to work and past that have no energy or physical ability to spend time with my wife, 2 kids or enjoying anything I used to do on the side.

I used to be able to work 50+ hours a week, go out 1 night a week until midnight fishing the beach and spend 6 hours a week playing poker.... Now I work, eat, sleep and repeat the process... And all of this leaves me in bed most of the weekend..

SOrry to rant but just very fustrated and in pain...

Chris