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Lumber Puncture after scan

Hi Everyone,

A while ago I posted about an unusual scan. The radiologist was asked to scan my brain and cervical spine. After the scan they informed me that they decided to scan my full spinal cord. They informed me I should not drive until my next appointment (December) I have been trying in vain to get some answers but unfortunately have been unable to contact my neurologist. My GP has also been unable to get a straight answer why.

Before this I was diagnosed with CIS I had been left with no information and had a fair few big symptoms I managed to get intouch with an MS nurse who asked for the scan unfortunately she has been on leave since then

Anyway I got a call from the hospital asking for me to attend an appointment for a lumber puncture ASAP.

So 2 questions. Firstly, I know it’s impossible to guess what’s going on in a neurologists mind but would you say there is a good chance they saw something fairly significant on the scan?

secondly, how bad is a lumber puncture? I know we all experience pain differently but I am quite worried as I am a wimp. I have had epidurals and facet joint injections before would you say this is a similar pain level (if anyone else has had these)

Thank you for listening and I hope we all have the answers we are searching for soon.

Syd x

Firstly I cannot comment on why you have been asked to have a Lumber Puncture ASAP. For me the actual Lumber Puncture was not painful it was the 3 days afterwards where I had to lay on my back as the slightest movement sent a shooting pain into my head. Saying everybody is different and I have seen other posts on the Forum of how others alleviated this issue. Good luck and I hope everything goes OK. I personally would have the procedure done you have nothing to lose.

Hi Syd, Have no idea why they said “don’t drive.” Could be as simple as they were thinking of something nothing to do with you; and that just came out. The actual procedure is not painful for an LP; 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

Big thing on the LP, make sure they make you get into the fetal position, knees in and up in towards you chest. This then gives them the best access to the spine. They also take the fluid from below the spinal cord, so don;t be worried about them missing and paralysing you (I was scared of that going into it) as others have said, lots of caffeine before and after. My LP was fairly painless, the local did scratch a bit going in, and they did ping a nerve part way through - but just put some more local in and was fine afterwards.

I think it’s all a bit of pot luck on the headache for hell, but for me was absolutely fine. I was back to work the next day (maybe I got lucky) Good luck

Hello Syd

Like everyone else, I can’t even begin to guess why the hospital have panicked you by calling you for an urgent LP. You already had a CIS diagnosis, so perhaps this is the last piece of evidence that will give you a diagnosis of MS. Or maybe not.

The LP does sound a lot more scary than in reality. It’s just the thought of someone sticking a needle into your spine to get at the CSF that is frightening.

They numb the area first, then inject a local anaesthetic, then stick the needle in and withdraw the fluid. As this is all taking place behind you, you don’t even see the equipment.

As others have said, make sure you don’t get an idiot of a doctor who tries to get at your CSF without you being curled up. Imagine your spine, in between the vertebrae is where the needle needs to go, so you have to be curled up so there’s a gap for the needle.

And laying down for a couple of hours drinking fat coke with a bendy straw is the general advice. (I think it’s sugar as well as caffeine, else Diet Coke would have the same effect.) This ought to ward off the headache. But then some people don’t have this advice and don’t get the headache, while others get the headache anyway. Personally I didn’t have the benefit of this advice but didn’t get the headache.

Hopefully you’ll get answers to all your questions very soon after the LP. Obviously, you’ll be able to ask what was seen on the scan when you are in the hospital having the LP.

Good luck.

Sue

I can’t thank you all enough for taking the time to reply. You have reiterated what I thought however they said I will be up and about 15mins after the “procedure” so it is very interesting about the laying down after as I had herd that and thought I must be wrong. I will definitely ask and check. I have a very physical job and 3 under 5s my husband works away so I hope to be back on my feet pretty much straight away! This site is amazing for reassurance and whatever my diagnosis (or not) the support here is fantastic. Thank you and I will update as soon as I know Syd x

Try printing this off and taking it with you: https://www.mstrust.org.uk/a-z/lumbar-puncture They recommend laying down for 6 hours after an LP!!

The least the hospital should give you is 2 hours.

Sue