Forum

Oh no! The dreaded Lumbar Puncture!

Hi all,

Wondered if I could get some advice about my upcoming (I think!) lumbar puncture.

Background is suspected ON in Dec 13, and about 5 years before left sided weakness which resolved and was dismissed after a clear brain only MRI. Saw neuro in March who suspected MS and ordered VEP and MRI full spine brain with contrast.

Due to problems at my hospital there have been huge delays on everything. My MRI results came back to GP several months ago showing multiple t2 hyperintensities at c5/c6 posterior cervical spinal cord. Clear brain and rest of spine too blurry to make out. Contrast showed up nothing. Was told by sec that the VEP were negative. I had a very short letter from the neuro saying my case was being taken to the multi disciplinary team meeting where it would be discussed with the neuro inflammatory disease experts, and that they will repeat the VEP and possibly order a lumbar puncture. So have not actually yet had a follow up with the neuro since my first visit in March and therefore have been in Limbo all year really.

Have had the repeat VEP appointment back in Aug, and then an appointment for a neuro follow up cam through for next Friday, so assumed the Lumbar Puncture was off the cards so to speak.

Yesterday I had a letter through saying I have been booked into the planned investigation day case unit at the end of this month. It doesn’t say lumbar puncture but what else can it be?

So my question is two fold:

  1. I had no information with the letter about LP(assuming that is what it is), so as a self employed person, what should I plan for time off wise - I hear about the headache, but how likely is it I will have one and how long could it last?

  2. My worry is that when they booked the follow up, they expected me to have had the LP. So if I go along on Friday, they may well just say we are waiting for the LP and I could be waiting months again for another follow up. I want to find out from the horses mouth finally what the MRI results mean, but wonder if it might be better to postpone my neuro appt to after the LP?

What do you think?

Thanks :slight_smile:

Hi, just a quick addition to post: have confirmed with the hospital it is indeed a lumbar puncture I am booked for, and have decided that I will go on Friday because the hospital has said I need to because they like the consultant to tell you about it.

But would still love some info on the length of time I may be out of action afterwards…

Leah :slight_smile:

Hi,

The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

Good luck.

George

1 Like

Hi Leah,

when I had a LP I can honestly say I felt no pain, just a feeling of something being done at my lower back but definately nothing that hurt.

The procedure took about 90mins & when it was finished I stayed on the bed for 45mins, drinking plenty of water or juice. I had no headache at all & carried on with my day as normal.

Good luck, like me, you might not have any adverse effects.

Rosina x

Hi all,

Thanks. I have decided to change my working days that week so I will work the day before, and then that day I will ahve the procedure and take only 2 days off. Hopefully I will be on your side of things Rosina!

I am quite a brave little soul and tend to be able to cope well with procedures, but it’s the after affects I worry about especially being a self employed mum…

Thanks,

Leah :slight_smile:

As others have said its not that bad had mine in July not painful at all they was surprised how quick they got fluid from me, they made me a cup of tea and I had to lie down for 45 minutes, they had me drink water i only drank one glass no headache at all, I dreaded it but it was nothing the doctor was nice and told me everything they were doing I made sure no trainee was doing it.

Try not to worry it’s really not that bad.

Good Luck.

Unless you are unlucky, you should be fine by the next day. If you have a strenuous, physical job, it might be an idea to plan a rest day the day after the LP; otherwise you shouldn’t have any trouble working as normal the next day.

For most people (me included), the worrying about an LP is far, far worse than the thing itself.

Good luck.

Alison

To reiterate the advice i have heard in the past (and some of the above) - rest lying down for an hour so immediately after. Drink a good dose of water - a litre perhaps. Coffee too is advisable.

It is likely to not be as bad as you think it will be.

I have had 4 LPs, I had 3 done under X-ray n I ask for extra local to minimise the pain, They have still all hurt and left with a sore back for a few days after. I have also had the headache every time lasting up to 5 days. You have to be careful about lifting or bending after as you can cause a leak. I had one last wk & was in hosp for 6 hrs and they made me rest for a few hrs after in a ward. I think everyone is different, to me there horrible. Fingers crossed yours is a easy one x

Hi everybody,

Sorry to not have followed up this thread for a while. I had my follow up appt with the neuro, and she said that she felt that the “mark” on my spinal cord was not indicative of MS, but had ordered this LP in order to rule it out, if it is clear I will be referred back to rheumatology as the assumption is that it is caused by my pre existing Sjogren’s Syndrome - which is an unusual but possible situation.

I had my LP last Tuesday. My appointment was at 12 but I waited until 6pm for the doctor. He was pretty good and got the fluid first time without too much bother, and it wasn’t too painful, though I did feel it a bit.

For the first 24 hours I just felt really tired, and spent most of that time lying down. On Wednesday evening the headache hit, and stayed with me until yesterday when it started to ease up, today i can feel it when I am on my feet a lot, but sat down I am fine…

Just got to wait for the results now.

Leah :slight_smile:

Hi all

I have been reading about peoples symptoms on this site i just wanted the advice of others suffering with these similar symptoms about 13 weeks ago i started to feel unwell aching arms and legs like i had flu and i was incredibly tired i also was experiencing some balance problems and feeling like i was getting confused over things I also had trouble swallowing .One night i went to bed with a strange feeling on my nose when i woke up the next morning the left side of my face was numb.I made an appointment to see a GP he examined me and poked my eye with cotton wool and said that my blink reflex wasn’t working properly and he thought it could be bells palsy or trigeminal neuralgia however i didn’t have all the classic symptoms of these and the tiredness,balance and feeling unwell seemed to be getting worse and i was also getting a heavy feeling in my legs.After 3 appointments with the GP he said he still didn’t know what it was and he was sending me for an MRI i had this done 6 weeks ago and the GP rang me to say that the MRI results were intreresting and that the blood flow to the neucleus of the trigeminal nerve had stopped flowing he said they didn’t know why and that the neurologist that looked at it wanted to see me and do another MRI to see if there had been any change.I received an appointment with the neurologist who i saw a week ago he asked me my age and a few questions about my symptoms he then examined me and said he wanted me to go for a lumbar puncture he said its either an infection or it could be multiple sclerosis and he will be able to tell which from the test.I was pretty shocked by this as i thought i was going to have another MRI like the GP said no one had ever mentioned MS to me before.I didn’t even know what it was really. Im awaiting an appointment for the lumbar puncture now could anybody please tell me roughly how long you have to wait for the appointment and results please? i would appreciate any advice thanks

Appointment was fast 2 weeks, results took much longer I waited 2 months.

Hi Tinkerbell,

it’s hard to say, it seems that the situation is different at each hospital… Why not phone the neuro secretary to see if she has any idea how long for you?

leah :slight_smile:

thanks very much Alysea :slight_smile:

Hi

Thanks very much for advice think i might give them a ring see if they can give me an idea of how long. Its only been just over a week since i saw neurologist just wasn’t sure if i was looking at weeks or months thanks again .

My wife had a Lumbar Puncture and within 24 hours was crippled by what she described as the worst headache you can ever imagine. She went back in to the hospital the next day and they performed the Blood Patch procedure which gave her immediate relief, however after 24 hours the headache was back :frowning: Went back to the hospital and the registrar was of the opinion that the blood patch had failed and therefore would most likely fail again if they repeated it (although I have read a lot online how a second blood patch attempt has a much higher success rate if the first one failed).

Has anyone else experienced a failed blood patch?

What some of timescales are people experiencing with regard to the headache going?

Is it true what I am reading everywhere about plenty of caffeine to help the pain?

Sorry for all the questions guys, I’m just desperate to help my wife, I have never seen her suffer so much! :frowning:

hi

The thought of the LP is quite scary but it is not that bad but just make sure it is an experienced person doing it and you will be fine, i drank loads of coke and water and never had a sore head at all but i was also meant to have steroids for 3 days with a drip but because of bed space they just gave me tablets to take at home 500mg for 5 days so i dont know if that stopped me getting the headache or if it was the fluids i drank, i did have some pain in my back like somebody had punched it but that was only for a couple of days

Had the dreaded LP last Tuesday (it’s now the following Monday) and I still have a headache although it’s easing now. The LP itself was no problem - a stinging feeling as the needle went in and then nothing so don’t be worried about that. But have had the migraine from hell since when I stand up for longer than ten minutes.

I advise anyone who is having this to clear the decks for a week - get plenty of shopping in and make sure you have someone on hand to make you a cuppa. I’m no wuss and I’ve never spent this long off my feet - even after having my daughter but this has floored me. Just waiting for the headache to go. I would advise anyone to book a week off - just to be safe and have lots of snacks/bottles of coke ready.

You might be okay and I’m one of the unlucky ones…

hi all just looking for a little advice i was recently discharged from hospital after a second neurological problem this time with my balance they did mri’s which showed a second legion on my brain that wasnt there 6 months ago and decided they were treating me for ms i was given 3 days of intravenous methlyl prednisone and have been changed to a different neurologist for a follow up appointment even after all this though i havn’t actually been told clearly by anyone that i do definatly have ms is this normal ? is it possible my full diagnosis will be given at my next appointment ? thanks

Hi Tinkerbell,

I’ve just been reading your posts earlier in this thread, and I’m sorry you ended up in hospital.

I’m afraid I can’t say whether your new neurologist will give you a confirmed diagnosis or not, he or she may want to carry out further tests. A diagnosis of MS, if it actually is that, does usually take a lot of time; many other conditions have to be ruled out. However, you have had two MRIs in the last six months and probably a few other tests when you were hospitalised, so things are moving along.

Before you go to the next appointment, make a few notes of important things you want to tell the new neurologist, not a long list of everything you can think of, just the most important. It really is annoying to remember something five minutes after you’ve left the hospital, you can’t just pop back.

I know it’s frustrating waiting, but the neuro does have to be certain.

Hope your follow up appointment comes through soon.

Ben