Lumbar puncture
Now updated with new stories and advice!
Thanks for dropping by to the latest in our series of multiple sclerosis discussion blogs.
A bit different from our usual format in that in this case I am looking for your help and advice.
I have an old friend who is in the process of being diagnosed with multiple sclerosis. I say process because she has a lumbar puncture test coming up and is very worried. In fact she has been scheduled for the lumbar puncture test twice before and has cancelled on both occasions. As she explained she was scared and uncertain of what was going to happen to her.
So I said that I would do this blog post for her. I’m asking my readers to share their experiences of a lumbar puncture test with her in the comments box below. In particular she is really interested in the following questions:-
a) What did the lumbar puncture test involve?
b) How long did it last?
c) What are the downsides of the test?
d) Do you have any tips to make it better?
Thanks very much in advance for your help.
| DianeRSmith | I’m really a firm believer in making sure that the person that does the lumbar puncture is very comfortable in doing them. That doesn’t always mean a large facility. I did mine in the 25 bed hospital where I work. My lumbar puncture involved lying flat on my left side, a cleaning prep, a dose of numbing medicine which is important to not feel the rest. It was important to lie still for the rest which was the actual puncture but it went very quick. I then sat up straight drinking caffeine and left shortly. I spent the rest of the day drivib ing plenty of fluids. The whole procedure probably took 15 minutes from prep to sitting back up. If that. I can’t imagine any downsides. I think other than the spinal headache which is very easily corrected, complications are extremely rare if the provider is well trained. Tips to make it better are following their instructions. For me it was lying still for that minute, drinking caffeine and fluids, and I believe I was supposed to be quiet the day I had it done. |
| patienttalk patienttalk.org |
We were asked to post this on behalf of one of our readers
My lumbar puncture was done at Mayo Clinic |
| DainaGurien | Ok…I understand the fear I really do BUT the fear is way overrated 🙂 The guy that did mine, that was all he does. I promise you…he just told me to late flat on the table..and he had a little screen where I had the option to watch or not watch the process. Of course I said NO. I was scared to death. He swabbed a little stuff on my back to sterilize it and when I thought he was about to stick the needle in I told him hold on..give me a minute. HE WAS ALREADY DONE Lol. He had already stuck the needle in, took the fluid and was pulling the needle out. I never felt one thing. Afterwards I was told to stay flat and another little thing I don’t know if all doctors will tell you is…drink caffeine. Yes Caffeine. He told me the best thing I could do was drink cokes or MT Dews for the next 12 hours or so because caffeine helps patch that spot up. It was fine. If they asked me to do it again tomorrow, I wouldn’t stress out a bit. I can tell you the injections I take for MS are WAYYY worse than that. I just didn’t feel it. Good luck. Don’t be too scared…you will be fine!!!!! |
| maireadt | the spinal tap was ok found the beginning relaxed really helped focus on my breathing.The medical team explained exactly what was going to happen and the importance of stay very still. The procedure is uncomfortable but not painful But the headache afterwards was terrible feel that my head was too heavy for my body a very strange sensation – Most important thing is lie flat and try to keep still and drink lots of fluids. Found it really helped to have someone to check on me to reassure me that I would be ok. The thoughts of having the procedure is the worst part – but once you enter the hospital to have spinal tap done the medical staff will take go care of you. You will be surprised how quickly the time flies. Not everyone experience the headaches so fingers crossed it wont happen to you. In my case find going the dentist far more terrifying that having spinal tap. Have someone with you for moral support.Afterwards you will be very proud of yourself for having it done. |
| shante330 | It was a very simple procedure I had no pain medications before hand they simply washed the area with prep solution which was cold. Doctor pushed kinda hard on the area he wanted to use, after he found where he wanted it was a pinch sensation and he got fluid in about 5 minutes and he was done. I had the option of sitting on the edge of the bed or laying on my side and I chose to sit up. The nurse will help you to remember to breath. After the procedure they have you lay flat for 24 hours and drink plenty of caffeine (not sure what that does) but I didn’t and my god I had the worst headache ever for about 5 days. Make sure you have someone to sit with you for those 24 hours laying flat, you can sit up for restroom breaks and to eat. It really wasn’t a bad experience. |
| VanessaCarlson | I had my lumbar puncture about a month ago. It was much easier and less overwhelming than expected! I was in and out in less than an hour. Mine was fluoroscopy guided, so I was set on an imaging table on my stomach and was allowed to watch the whole thing. I took it easy for a few days after as a precaution bug had no major side effects, no headache, no pain. The one downside I would mention is I’m still waiting on the “ms panel” part of my tests! The preliminary results came back with an increased number of WBC in my csf fluid, but I have nothing else yet 🙁 I only suggest to air on the side of caution and take it easy even if you feel okay. I hear spinal headaches are a bitch. |
| pbieganski | I have been very fortunate as I had no difficulties after the procedure. No significant pain during or after; just a twinge as she entered the lumbar, no pain during withdrawl. Laid on side for entire procedure I just had gel applied to the area to freeze/numb the imediate area, then in 5 minutes puncture done, laid on side for about 15 minutes then assisted off the table and then in waiting room for about 15 minutes then allowed to leave. No real after effects. Again I have to say no real issues, done by my neurolist. Make sure the person doing the puncture has experience you do not want to be one of the first 10 patients that the person has done taps on. Wish you all best of luck. |
| Shazmo | a) What did the lumbar puncture test involve?
Me Curled up firstly on the bed, but it didn’t work that way and after 2 unsuccessful attempts to lean over a table and that finally worked, although we went through 3 needles and tried 3 different vertebrae to get fluid. They basically do it to rule out any other possibilities i.e. viral infections that could be causing your symptoms, it can’t tell them if you have ms, just that you don’t have anything else. b) How long did it last? My lumbar puncture lasted around 1/2 hour and was absolutely horrid. c) What are the downsides of the test? My back hasn’t seemed to recovered (Had it in 2012), it still gets painful in that region and often clicks out of place or locks. I didn’t get headaches at all, it was just really sore for a while and super sensitive. I will never have one done again, now my back feels weakened and uncomfortable at times (i.e. sat in the car for long journeys). d) Do you have any tips to make it better? Best tip I can give is breath, relax and don’t move at all, especially after I stayed led down for a good 30 mins after. GOOD LUCK! |
| Crystal A | LoredanaConcoli tkarkhof I understand what you are going through. I was told I had MS at my first appointment with the neurologist. 5 MRIs, 4 rounds of blood testing, a spinal tap (required by my insurance). another neurologist (because the first one could send me for tests and bill me but not give me a final diagnosis and prescribe me medicine) and 3k in doctor bills, I finally got my meds. It has been three weeks and i still have no feeling in my fingertips and the sharp spasms of pain are less frequent, but more severe. Don’t give up hope, make sure you irritate the doctors until they give you answers. |
| LoredanaConcoli | tkarkhof I wish you would be right about there shouldn’t be a reason to do the spinal tap to prove that you have MS. Even though my MRI came positive with MS, it seems that the insurance won’t approve my treatment without the spinal tap results. I’ve been going to the doctors for the last 3 weeks to run tests over tests. Now I have to wait for another week till I get the spinal tap results. Meanwhile my symptoms get worse and worse. I was not prescribed any medication so far. Today I came to the conclusion that I will never feel again my finger tips of my left hand. It is ridiculous to run from a doctor to another even though you have the best insurance. I wonder what other people that don’t have a good insurance, go through? |
| LoredanaConcoli | a) What did the lumbar puncture test involve? I had to lay on the table. They took an X-Ray . I had to relax. It is not painful. The doctor had to draw liquid to fill the bottoms of 3 tubes. I could watch him putting the needle in my spine and taking the liquid, while watching on monitor. At some point, when he drew the last sample, I felt like he was taking liquid from my left leg. I felt it getting numbing. But I think it felt this way because the MS is attacking my left side of the body. There were two other male assistants. I asked them to message my left foot. The warmth of his hands calmed down my numbness. Then I had to lay down in bed, for 4 hours. I slept so much. Then I drove home and I laid down in bed for 24 hours. b) How long did it last? The procedure lasted for last for 20 minutes. c) What are the downsides of the test? d) Do you have any tips to make it better? |
| tracyab | My lumber puncture was done while I was sitting up hugging my hubby for physical support! The nurse tried to get me to lay down however the doctor wanted me sitting up. All the doctor told me about the process was that they took some fluid, I would have to lay flat for an hour or so then go home and rest til the next morning. After the doctor took the fluid the nurse got me to lay down for an hour, however then the doctor said I could go. I went home and layed in bed, but not flat on my back (wasn’t told that!) I ended up so sick for 8-9 days, I couldn’t move! 2 people had to help me to the bathroom. Couldn’t handle any kind of noise, light or movement. I’m not actually sure what happened in those days. My head hurt that much I couldn’t handle anything, even thinking. I won’t EVER have another lumber puncture again, I’ve even told my doctors that. Just make sure you get all the information and know exactly what the after care is, and what to look out for afterwards. |
| TLDeGray | I wrote up my entire lumbar puncture experience here: http://tldegray.wordpress.com/category/health/lumbar-puncture-2010/
Hope it helps. |
| barbaramcevenb | I had a lumbar puncture(spinal tap) a few years ago. It went well for me. The doctor and hospital were very caring and told me what would happen and how I would feel during and after. The wait time was the hardest part; I was going to have the puncture before 9:00 am but had to wait until after 11:30 am. I was an outpatient in the hospital; same day surgery unit at the hospital. I was placed on the table, face down for a second, then I had to turn my head, with a pillow under my pelvic area to elevate the part of my spine area. I was told the pain needle would be worse then the puncture itself, which it was. It really wasn’t that bad for me. The doctor used an machine, x-ray of some kind, to guide him into the area he wanted to puncture; which made me feel much better then him going in blindly. He pulled out fluid to be tested. I think I was in the room for about an hour. I did not have to lay still for 24 hours. I was sent to the recovery room and had to lay there for some time; went home and stayed down and take it easy for 24 hours. Relax, this is just another test for the doctors need to get answers for you and them. If you are unable to relax when you think about this test, talk to someone; talk about why you are nervous and don’t be afraid to tell the doctor and staff that you are afraid. They will not think less of you. Everyone handles this test in their own way and they are your fears. Good luck with the test. |
| DerrickKozerka | i too was VERY nervous about my LP. all i could think of was was the movie exorcist when her mother took her to get a battery of tests when she didnt know what was wrong with her. also my mother had one when she was 2 and she remembered how much it hurt. medicine has made a lot of advances since then. be calm. it is a BREEZE. the worst part MAY(a big MAY) be AFTER the LP. as far as the LP itself, the worst part is when they have to make a small scratch in your back to apply the numbing agent. after that, you dont feel anything. now after the LP is all said and done, some people have varying experiences. so i can only share what i personally have felt. i was told that i MAY have terrible head pain, and that 2 things will help alleviate it. STAYING STILL ie laying down on your back(this was easy i was diagnosed in the hospital) and CAFFEINE. i had my friend bring me two venti quad shot white mocha lattes for after. i didnt have ANY problems, you’ll be fine. good luck, and i hope it’s negative. |
| Jessica trew | Hi, I had a lp a few weeks ago. It really isn’t THAT bad. It is a helpful test. 90% of people with ms have oligoclonal bands in their cerebral spinal fluid. Also, lp can rule out other disease processes. Whole procedure from setting up to finish was about 40 minutes. I sat on side of bed with legs over side and bending forward. I had no sedation. The local anaesthetic needle hurts the most. It was so effective that I didn’t feel the lp needle until he was right in the space and draining fluid. Afterward, I had a bright purple bruise straight away on my back. I stayed laying flat at the hospital for an hour. Then went home and stayed laying flat at home all day. The back pain on that first day was intense but simple analgesia helped enough to get by. I did experience a post lp headache for about 5 days. That was very painful but just unlucky if u get one. That’s about all, tips to help? Make sure u have the rest of the day off. Have some movies ready to watch and have someone set up some food and drinks by the couch so I don’t have to get up. Try not to stress. Stress is proven to increase pain. Good luck |
| mtcross | a) What did the lumbar puncture test involve? I am assuming this is probably the same as a spinal tap, which I had. My procedure was as outpatient in the hospital. I was placed on a table face down and strapped down and given drugs to numb the pain. I was then turned so my head was pointing toward the floor and my feet were in the air. They placed a large needle in my spine and then began to have the spinal fluid drip into a tube for testing. b) How long did it last? about an hour. c) What are the downsides of the test? You must lay flat on your back for the next 24 hours only getting up to use the bathroom or eat. d) Do you have any tips to make it better? Just relax and let them do the testing. It will not take long and it is a good test to have done to diagnose MS. I hope this helps. |
| tkarkhof | There is absolutely no reason in today’s medicine to do a lumbar puncture to prove or disprove multiple sclerosis. They may be trying to rule out something else, in which case they need to come up with a more rational explanation, but in today’s world, 2 MRI’s with varying lesions on the films justifies a MS diagnosis without the need of a lumbar puncture.
In my case, they stopped counting the lesions I had at 32. I had lumbar punctures at 2 different hospitals, because Vanderbilt University Hospital redid all the tests the charity hospital had already done. It was stupid and unnecessary. Within 6 months the MS Association of America came up with the 2 MRI protocol and I would have jumped for joy if I could have. They never found the bands they were looking for in my spinal fluid. Some of us don’t have them. How were my experiences? The first one was a bit ugly because I had students perform it. However, I had had a mylogram about 3 years before that was far worse, so I went with the flow right up to the end when I was pretty sure that I was going to kill someone if that kid poked me one more time. (He lived) By the time I got to Vanderbilt, I told them to knock me out. The creep wouldn’t, he basically gave me a benedryl. The question for you is this, do you want to do all that you can to find out what is making you sick, yes or no? If yes, then by all means, go and let them do it, tell them you want to watch on closed circuit television and want a frosty beverage waiting after it is over and a stud named Mario or a beatiful woman named Maria waiting to give you a backrub to loosen all the muscles that are in knots after the procedure.. |
| ChristineDietz | I had a much better experience than Marilyn. Make sure whoever is doing your lumbar puncture is experienced…neurologist, anestesiologist….They will draw some spinal fluid from lower back, below where nerves run, so no chance of paralysis. You will feel pressure. You MUST lay flat for 8 hours to ensure the puncture seals, headaches are caused from small leaks of spinal fluid. Otherwise, that is all. Most accurate way to diagnose MS. |
| MarilynRoberts | Lumbar puncture or spinal tap (not the fictional band) I think is done to everybody that is about to be diag’d with MS. The whole procedure is like 15 minutes at the most. However, DO NOT STAND for at least ten minutes after! I didn’t listen, stood a couple minutes after and had the most severe migraine for three straight days! I refuse to do another! Do MRIs, blood tests, whatever, but I’ll NEVER EVER have another spinal tap!!!! Sure, rent me the movie, that was fun. The procedure, never gonna happen while I’m conscious! |
