Lumbar Puncture

[Angelika_23]

I am to have a lumbar puncture next week. I am not looking forward to it. Originally, I was told it was going to be done in the afternoon, I would have to lie flat for a couple of hours, then I would be able to go home (with someone driving me). Okay. Then, I talked to the nurse of the doctor who is doing the procedure, and SHE said that I would be there several hours, then they would send me home on complete bedrest for several days.

My concern is that I take Midodrine for my HR, and if I am on bedrest, then I shouldn't take it. But, if I don't take it and if I have to get up to go to the bathroom or get something to eat, I will be at a very high risk for collapsing or fainting since the Midodrine won't be there to keep the HR down for me.

None of my docs want to take responsibility on this one. They all keep telling me to call another one. I finally nailed down the neuro, and am waiting for a call back from her.

Has anyone else had to deal with anything like this? I am starting to become afraid.

Thank you

Angela

[Sophia3]

Angela

Often after a spinal puncture, you can NOT get up at all and may be asked to use the bed pan. do you have HIGH SUPINE BP when on the midodrine? Many do not and it worth checking. This is a tricky question to answer.

I had one 25 years ago for a back problem and got the HoRRIBLE SPINAL headache that lasted for DAYS. They say it's because I did NOT STAY FLAT. Well, hello, I threw up after the procedure (they gave me morphine before it and it makes me sick but I did not know it back then) They have come a long way since then for reducing the headache issues from what I have read here and other places. I was sick for days but this was in 82.

Hard to lie flat when vomiting. I say this not to scare you but MANY get the headaches afterwards so read up on this...are you having back problems to TRIGGER such a test?

If you posted about this I must have missed it. Many here have had spinals but they are no picnic for some. Others get through them just dandy.

Mind explaining why you need one?

[Poohbear]

I've had several lumbar tests done.

Are they just drawing a sample of fluid for testing? If so, this should be pretty straight forward. Expect some pain and discomfort but generally they have you lay down for a few hours and rest overnight (if you are having this done in the afternoon then just lay flat for the night). Try to lay down in the car on the way home.

Newer studies show that most of the time, if you are going to get a spinal leak headache you will do so fairly soon after the procedure. You need to rest to try to help your body heal though so don't engage in anything too active for the first day after procedure.

You can help your body a lot by drinking LOTS of water both before and after the procedure. It will help the procedure and it will also help your body heal that hole.

Bedrest for several days is probably not necessary unless you are having some lengthy procedure done or unless you have complications from the test.

I did have soreness for a long time though.

[Maxine]

I know many people who have had this done who have chiari related conditions in addition to thier ANs dysfunction. From what I heard you need to lay flat for a few hours, then you go home and just take it easy for a couple of days.

Make sure the physician doing the LP is experienced, and you should be fine.

Here's a link of LPs

http://www.webmd.com/brain/Lumbar-Puncture?page=5

I have not had one yet. But at some point I know this will need to be done with the number of neuro problems I have.

Good luck to you, and I'll say a little prayer.

You'll do fine.

Maxine :0)

[Sophia3]

Sorry

I forgot to mention the name of my procedure was a myelogram (sp) to identify cervical spinal pain..and of course it was normal. It was after this I got very ill.

Vomited for two days. They only let me go home then because my brother in law was a doctor and I stayed with my sister.

Course, nowadays, insurance would've pushed me out the door with a motion sickness bag!&$#%@ I did not have the ANS issues I do now...or they were less pronounced.

Good luck and keep us updated.

[Lukkychrm42]

Like Sophia said, many people don't have high supine BP with midodrine- I'm one of them, and especially if you'll have to get up at all before or after the procedure, then it seems that not fainting might be better. I had an LP a few months ago, but I don't remember it.

You are supposed to stay lying down afterwards, but maybe they'll put in a foley if they don't give you a bedpan. I was still seizing at the time, so I was held down (apparently) and kept convulsing afterwards, so of course when I eventually regained consciousness, I had nasty headache for a few days (which was supposedly due to the movement post-LP). If it makes you feel any better, though, that was the only symptom that I felt from it- I didn't have back pain from the needle. The vomiting started before it, and continued for some time, so I don't think it had anything to do with it, either, but just trying to get rid of the excess fluid.

As for the bedrest, I thought that it might be a few days as opposed to several?

[dsdmom]

I had a lumbar puncture a couple of months ago in the ER and the test itself wasn't that bad - just uncomfortable. But the aftermath was terrible - they did not tell me to drink fluids, lie down, etc... and I had the WORST headache for 6 days. One thing to realize is if you do get the headache, you will be relegated to lying down anyway because getting into an upright position is what makes it terrible. Normally lying down makes your head feel better. So, I think either way you look at this, you'll be lying down - whether you have a spinal headache or whether you are trying to avoid one. However, that said, and as Poohbear said, I think if you don't get a headache in the first 24 hours or so I think you'd be fine - I think they come on pretty quick.

Good luck!

[preacherswife]

I've had two LPs. I was never told to lie flat for any length of time afterward, and I was up and around like nothing ever happened. That being said, the first one hurt like everything, but that was about six years ago. (During the meningitis scare on college campuses.) The second one was in March of this year. My neuro asked if I'd ever had an LP before, and since I had, he knew that I knew what was coming and gave me some Ativan before the procedure. ASK FOR ATIVAN!!!

[morgan617]

I've had them and helped with a zillion of them. Mine was like nothing. They had me lie flat for a couple hours, it didn't really hurt at all, and I couldn't tell they'd done anything.

I've helped with probably a few dozen of them and think I had about 2 people that got a headache. Just remember, it is far more likely to be simple than it is to be a horror story. The hardest part for me was to stay curled in a ball. Some people are more comfortable sitting up, leaning over a table, and they still don't get a headache.

The side effects are very rare, and though they do happen, the chances are far greater you will be just fine. Good luck sweetie....morgan

[Angelika_23]

Thanks everyone,

Sophia3, I am having one done because the neuro is suspicious of the "viral meningitis" I had about 5 years ago, just about 6 mos before my symptoms started. She thinks I might have something in my spinal fluid (?) that might be causing all the problems. I'm not sure how I feel about that. I'm not sure what the treatment would be for that.

I am still pretty scared, but my husband is able to work from home, he just found out, so I won't be home alone.

Thanks everyone for your encouraging words!

Angela

[MightyMouse]

I haven't had a lumbar puncture, but have had many c-spinal injections -- the meds they gave me beforehand helped keep me calm and still, and afterward, I was sore for a few days most of the time; only once did I have lingering pain for a week or two.

Try not to worry too much (easier said than done, yes ).

Nina

[flop]

The advice given in the UK is to lie flat for 4-8 hours then rest in bed until the next day, it is also advised that you avoid lifting and any major activity for a few days.

Do you have a home BP machine? If you do you could try taking your usual dose of midodrine and then lying down and seing how high your BP goes. Mine is hardly any different standing or lying when on midodrine, not everyone gets the reported supine hypertension.

One of my doctors actually advises me to take a dose of midodrine just before going to sleep - it is to prevent me from blacking out when I get up to go to the loo.

Flop

[jolineshope]

Hi, I have had several LP's over the years, with the last one being done in March of this year. I can tell you that they are uncomfortable, but not bad. The first couple I had done in the 80's left me suffering for months with headaches that made migraines seem like a walk in the park. However, in the late 90's I came across a doctor who read a study on how to prevent the headaches from happening and told me what I had to do to avoid one. What you need to do is drink a can of Coke immediately after the procedure and drink it quite quickly. The reason for this is that the syrup used in coke has a natural antinausea effect and the high content of caffiene causes the blood vessels to consrtict so the whole in the spine where they draw the fluid out of will constrict and plug itself almost immediately, and the caffiene will also prevent the headche too because it constricts the blood vessels in the brain. Then you should drink at least 12, 8oz. glasses of water and follow that with a can of coke every hour for three hours after the procedure. Then lye flat for the first hour but then you start moving the hospital bed that they have you in up a couple of inches every 20 min. until you are in a full sitting position. Don't let the hospital make you leave until you have slowly moved yourself like this to a sitting position. Once you have gotten to this position you can get up and walk and do whatever you want. Of course no heavy lifting or aerobics for at least three days. I can tell you since learning this technique I have had at least 9 LP's and have never experienced a headache or nausea again. I also went home and fixed dinner for my kids and cleaned my house , well that was before I develpoed this dysautonomia which has left me bedridden. But it has worked for my brother too. Who has had several of them due to his MS. It is an easy preventative method and you should be able to get right back to life with no worry about lying flat for days, so your midodrine shouldn't be a problem. You may want to ask your doctor about this method, because since I first learned of it I have come across many more doctors who know this. And the University of Chicago Hospital uses this method everytime they give an LP to anyone. The Nurse comes in with the coke and gets it ready so as soon as the doctor is done you start drinking it. If you do this you shouldn't need anti-nausea drugs or painkillers, and you should be able to sit up in your car and drive home.

Best wishes for you,

Hope all goes well.

Joline

[lalalisa]

Angela,

Please let us know how everything goes. That's good news that your husband will be at home with you. Can I pray for you?

This post has been extremely interesting to me because when I had my LP the dr. didn't even mention the need to lay down afterwards. I got dressed right after the procedure and my husband drove me home .....I'm sure I probably crashed and took a nap but no one instructed me to lay down. Anyways, I got the horrid headache that lasted for 5 days....as long as I was laying flat I was fine but couldn't lift my head.

All this to say is there a correlation between laying down afterwards and whether or not you'll get the dreaded headache?

Also, Joline, wow - thanks for sharing your advise. I will remember this if I have to have another one.

Take care,

Lisa

[doctorguest]

I am certified in performing lumbar puncture and have done a number of them, both in an inpatient and outpatient settings. There is really no true correlation between laying flat after the procedure and getting the spinal headache. When performed in a doctor's office, the patient can get up, get dressed and leave shortly after the procedure is completed. We do instruct patients to "take it easy, not to do any heavy lifting and not to shower on that day."

The facts are that the size and type of needle used can affect the risk of spinal headache, but some people will get it anyway, regardless of what needle is used, whether you lay flat afterward, etc. In my personal experience, young women who have headaches seem to get the spinal headache more often, but that's just my unofficial observation .

Staying hydrated before and after LP is very important. Good luck with the procedure!

[morgan617]

I would agree if you tend to be prone to headaches, you are probably going to be more prone to one after the puncture.

I am honestly surprised at the number of people on here who had such severe problems with these. Since I worked in hospitals, all the punctures I assisted with were on inpatients, and as I said, I can only remember one getting a headache. I could have gotten straight up and gone home also. In fact, I was home within a couple hours of mine. (The staff thought I was discharged, sent me home, called me back and said oops, brought me back in, he did the puncture, I stayed an hour or so, then went back home)

These people were also compromised in some way, or they wouldn't have been there, but no one ever had problems, even ones that were sitting up for the puncture itself. (in some cases, it's easier to do it that way, obesity, lung disease, etc)

The worst problem I had was the reaction to the adhesive on the bandaid, and the pain of getting home and having to go back. But snafus happen...morgan

[Sophia3]

I vomited so much after my myelogram, I was on IV's and vomited for two days. The headache made a migraine look like a picnic. The nurses at the hospital I was at back then were NOT sympathetic. I remember one coming in on her second day saying YOU STILL HERE?? As if I wanted to be and was still crippled by the combo nausea and vomiting. MY NAUSEA was a long side effect of morphine PRIOR to my procedure by the way.

I remember the night after the procedure, Neil Diamond was on TV and I so wanted to see the interview but looking at TV was impossible, on top of the nausea.

The headache of spinal taps is THE WORST!! My sister suffered a crippling one after an epidural in the 70's. She was in bed for two weeks as her mother in law flew in to help with the new babies. So obviously my family is prone to these reactions.

.... they have come a long way in the prevention of headaches.

I remember riding in the wheelchair to go home and the movement from the elevator felt like my brain went thru the top of my skull. I walked around my sisters house for 2 days LITERALLY holding on to my head and walking SLOWLY. But we took myself off the IV's when I left the hospital as my brother in law saw they were making me worse.

Also, the nurse that worked for my brother in law said back in those days, headaches were "downplayed" in spinal procedures, GREATLY as opposed to the REALITY.

Just like dry sockets after wisdom teeth sugery. Almost EVERYBODY I know had one after their surgery as did I.

Angela, I say this story not to scare you but to let you know, it's GOOD your husband can work from home. Lying flat in dark room with quiet is all you can do SHOULD you get the reaction I did.

They have come a very long way in the fixing of headaches with spinal patches and such. No such thing was around back then but I am not at all surprised by the stories here.

I would rather know the truth and be prepared for the worst!!

Also, I was flat on my stomach for my puncture, and then tilted on a table to make sure the dye went all over my spine. My VERY ARROGANT neurosurgeon yakked to what looked like a drug rep in a suit the entire time! But I had been warned about the horrible bedside manner. That would NOT be done in today's environment.

p.s. By the way, I expected WHATEVER when I had my hysterectomy last year and it went smoothly and was a piece of cake.

[Angelika_23]

Hello,

The dreaded lumbar puncture has been done. My back HURTS. But my head isn't so bad. I did have a headache at first, but I drank Coke (Thanks for the tip Joline) and it got better. The headache isn't totally gone, it's like it is waiting in the wings. When I get up, it gets worse for some reason.

The doctor said he had to use the biggest needle. He was entirely too jolly about the whole thing. He told me every single thing he was doing. I didn't really need to know how big the needle was. He told me since he had some trouble, and the needle was bigger, that my back might hurt more.

They also took blood and said they were testing it for a lot of things. The only thing I understood was Lyme disease. Hmmmm...

Thanks everyone for all your support!

Angela

[Sophia3]

YAY!! Glad the procedure is over and the tip about drinking Coke helped.

Also I meant to PM or post that my HEADACHE inducing test YEARS ago was an OIL BASED injection known to cause headaches if one did not stay FLAT afterwards. So I am glad your head is not too bad.

YES, when you get up the head will hurt worse!! If you go thru my longwinded post with the spinal fluid a bit lower, I had to HOLD MY HEAD as I walked as the fluid cushion was different and HURT.

Happy healing and just be NICE and EASY on yourself the next few days. And let us know what you find out.

[Jan]

If your headache gets really bad, and it will only do this while you are upright, you can go in and get a "spinal patch." They draw some of your blood and put it in your spine and it clogs the leak. It is immediate relief.

My understanding of why you have to lay flat is like when you get blood drawn and they put pressure on the point where the needle goes in, laying flat does some the same. The headaches are caused by a leak of spinal fluid.

[smatuszak]

I have had a few LP's in the last year and a half. After the first three I had spinal headaches, my neuro sent me in for an epideral blood patch. They worked almost immediately. The last LP were we sure that I would have to go back for the blood patch, so my neuro gave me a can of coke after the procedure. I sipped it quickly, stayed lying down in the office for 45 minutes, then went home. Took it easy for the rest of the day--and no spinal headache. I guess every doctor has their own ways. Good luck, I'll be thinking of you.

Sue--pacer412

[Angelika_23]

Hello,

My test results from the LP came back very good. No MS, no cancer, no lyme disease, etc. Also no idea what could be causing the problems. Everything was negative.

The neuro backed out on her promise. She will not refer me to anyone else. She told me to go back to my family doctor and start from there. She also told me she doesn't need to see me anymore.

Just wanted to give everyone an update.

Angela

[Mrs. Burschman]

Angelika,

I'm thrilled that you don't have any of the diseases you listed. But I understand the frustration of not knowing what the problem is! And I'm sorry you got "fired." A family doctor doesn't seem like the right person to be treating you. I know my family physician had no clue what was wrong with me.

I don't think they usually know a cause of POTS. So you're part of a big club!

Amy

[Angelika_23]

I guess I just want a solid diagnosis, and I would like some relief from these symptoms. I refuse to make peace with them - I'm not at that point in my life yet. I want to swing dance with my husband again, I want to teach my little one to ride his bike, I want to fly kites with my children!

I know I'm a newbie, and a lot of you have suffered more than I can imagine. I respect that.

I guess I just want some validation.

Angela