Lumbar puncture - unsuccessful...

val444

Hi all,

I had a lumbar puncture today, to help cement my diagnosis of MS. I have no fear of needles or anything but was dreading the procedure anyway. I don't think anyone relishes the thought of a needle in their spine though!

To make a long story short, although two doctors tried, they could not find the correct gap in my spine to successfully withdraw fluid. My spine was poked and prodded with a needle at least 150 times, I was crying and all, like a big girl about it. The nurses were lovely but I felt the doctors were frustrated with me, which didn't help.

I must now go in another day to have the procedure done under x-ray, but I actually don't know if I can bring myself to allow them to try again! Has anyone else experienced this? Does x-ray make it easier? My back is currently bruised and looks like a pin cushion! It is really painful, and it wasn't even worth it, coz they are gonna have to try again!!!

Thanks in advance.

FluffyCat

You poor thing! I have MS but never had an LP. My father did ask at the time would I need one but the doctor said no, not at all.

My diagnosis came fully from an MRI scan and symtoms. You could ask if an LP is completely necessary.

Good Luck

val444

My neurologist said because I have only had one set of symptoms, the next step is. Lumbar puncture. I wouldn't mind, but I don't feel that I was fully informed either! The first doctor was poking around for ages, and in my innocence, I assumed that that is what the procedure feels like! Oh well.

I have heard from several people that if you insist, they will give you some kind of relaxant so I may chance my arm and request that the next time. The very idea of going in again is making me sick.

Thank you for your response though...

FluffyCat

In my experience the staff are very uncaring and unless you speak up you will get left behind. Push for an MRI scan. You really will have to become vocal now!

Sardonicat

Oh you poor thing!

I'd wager the Drs were frustrated with themselves, not you. It's not your fault, now, is it? And they do know that. I had a lp done when I was nine. I still remember it now (many, many years later) so I can only imagine what you went through.

The x-ray should act as a guide though, so it shouldnt go like that next time.

Also, can you raise it with your Dr if it is possible to prescribe something for you to take beforehand, to take the edge of the trauma just in case it proves difficult again?

byhookorbycrook

Another ms-er here, never had a lp, thankfully, Push big time for drugs, I used to suffer in silence, now I take whatever is going. Did you have an MRI?

flossie

Although not an LP, i have had a couple of epidurals done using X-ray or ultrasound guidance. This should help them a lot and find the correct area to inject.

Let them know your discomfort and fear last time - could they put you under mild sedation?

nicechick!

val444 wrote: »

Hi all,

I had a lumbar puncture today, to help cement my diagnosis of MS. I have no fear of needles or anything but was dreading the procedure anyway. I don't think anyone relishes the thought of a needle in their spine though!

To make a long story short, although two doctors tried, they could not find the correct gap in my spine to successfully withdraw fluid. My spine was poked and prodded with a needle at least 150 times, I was crying and all, like a big girl about it. The nurses were lovely but I felt the doctors were frustrated with me, which didn't help.

I must now go in another day to have the procedure done under x-ray, but I actually don't know if I can bring myself to allow them to try again! Has anyone else experienced this? Does x-ray make it easier? My back is currently bruised and looks like a pin cushion! It is really painful, and it wasn't even worth it, coz they are gonna have to try again!!!

Thanks in advance.

Sorry to hear about your experience! If its only to confirm what they already know is it really necessary? My advice ask again if its something you have do well so be it but if there is any doubt that you don't have to well tell them to all well alone!!

I went for an LP which wasn't the worst experience I managed ok throughout or sooo I thought but thereafter I had a very painful experience after which resulted in me in hospital for a time all because of that faithful unnecessary damn LP! they managed to get fluid but stupid puncture wound didn't heal thus resulted in another procedure being done (which is a risk you take and is more common then we think) if I had been informed correctly I think I would have opted out!!

All in all an LP had me walking around like a duck! bruised, sore and off work for two weeks

My advice ask your gp or consultant

Aurora Borealis

I had to have one to confirm my diagnosis of MS too. An experience that I would rather not repeat. Hopefully things will go smoother for you next time round. I didn't have any sedation but I'd certainly opt for it if you can. I oddly find the MRI's far more distressing and now make them xanax me to the last before I do them. Starting to learn you have to make yourself heard when it comes to medical treatment. Best of luck with it.

val444

Thanks all.

I have already had an MRI and an evoked potentials test. I really don't want another Lumbar puncture, but if I have to, I am definitely going to ask to be sedated. Something else no one told me, until a kindly nurse took pity on me afterwards, is that when they are digging around your spine with a needle, some people cry, others laugh, everyone has a different reaction! Apparently my reaction to it is to sob...

You should see my back this morning, a day after the procedure, I have one million little red marks from needles, and it is all bruised and swollen too. Sad face.

ElleEm

val444 wrote: »

Thanks all.

I have already had an MRI and an evoked potentials test. I really don't want another Lumbar puncture, but if I have to, I am definitely going to ask to be sedated. Something else no one told me, until a kindly nurse took pity on me afterwards, is that when they are digging around your spine with a needle, some people cry, others laugh, everyone has a different reaction! Apparently my reaction to it is to sob...

You should see my back this morning, a day after the procedure, I have one million little red marks from needles, and it is all bruised and swollen too. Sad face.

I had the same issue with my LP. They worked on me for about 45mins, couldn't get the fluid, so came back about 4 hours later and went in with a bigger needle. It was easier the second time round as there was less poking around, it took about 20 mins the second time. Be prepared for back pain for a while. Mine was sore for a few weeks, and 9 months later, that spot of my back is still tender

val444

Yeah, i'm on anti inflammatories for a spell now to try and get over this ordeal. So not looking forward to trying again! Thanks everybody, at least I know I am not the first!

LittlemsSkelly

Hi Val,
I'm so sorry you had such a lousy time with your LP, it sounds pretty rough.:(
I had my LP done last september, was actually praying that were enough changes on the MRI so I could get the clinical diagnosis without the LP but no such luck ( or good luck since it actually means less legions but how and ever...)
It's not the nicest procedure to think about and given the awful experience you just had, I don't blame you for questioning the validity of needing it. But the symptoms of MS can mimic so many other diseases (Lyme Disease,HIV etc) and conditions and the only 'definitive' positive diagnostic test is an LP to see if CSF is positive for oligoclonal bands. And the saddest part of this paragraph is that I fought with 3 neurologists about needing it and that is what I was told so I'm spreading the joy....;)

Anyway, I was hysterical at the thoughts of it as any rational person would be, so the very nice doctor gave me a very large valium. It had the undesired effect of making me talk through the entire procedure, I did not shut my mouth once which distracted me from what they were doing and afterwards my lovely neurologist showed me all the equipment he had used (at my insistence, I'm sure yours won't....) In short, drugs are your friend in this case!!! Using the fluoroscope should make it much easier, so chin up and it'll be over and done with before you know it.

Oh, drink bucket loads of coffee/coke or anything with caffeine before and after to avoid the dreaded LP headache. You might not avoid it entirely but it might reduce it, the headache was worse than the needle in the spine honestly. Best of luck with the procedure whenever your having it and I truly hope things go better for you this time round.

val444

Thanks, LittlemsSkelly.

So it has been decreed, another lumbar puncture must go ahead, in just six days time. I actually broke out into a cold sweat at the thought of it.

And, in the meantime, I have come down with a sinus infection. This is not my week.

I am absolutely intent on requesting some kind of relaxant. I think I deserve it!

ElleEm

You defo do! Just make sure you stay flat on your back for at least 4 hours afterwards. I did this, on the recommendation of the doctor and avoided getting any headache.

GhostInTheRuins

I had a couple of LPs last month. The first one was grand because the doc had done it plenty of times before, unfortunately he didn't take enough fluid out so I needed another one done a few days later. The next doc was new because it was just after the switchover at the start of July, so she'd never done a LP before so she was a bit of a butcher, jabbing away and hoping for the best

If they do it right the worst part is actually the local anesthetic injection at the beginning believe it or not.

Like someone said, drink some red bull or something with loads of caffeine in it to try and prevent the LP headaches which are fairly bad. After my second LP I couldn't sit up for a few days afterwards without getting a ferocious headache. I'm not sure if that was because of the way the second one was preformed, or just because there was twice the amount of fluid taken out. Probably the latter so you should be grand if you stay lying down for a few hours and drink loads of caffeine.

femur61

I'd no problem with mine at all done by Ray Murphy. When I'd my first child awful time with epidural so was dreading LP it but was fine.

Nyberg

I have a quick LP question. My mum is due to have one in Sept. Her and i both see neuroligists in London (bad experience with them in Ireland) They want to keep her in overnight after the LP and have advised not to fly until 2 days after. Has anyone had to stay overnight for LP? & How bad is the headache after?? They're testing for Lupus or CADASIL. Oh she's 74

femur61

When I had my LP 10 years ago I stayed lying flat for over 12 hours, and in hospital for two days. No headache at all everything went fine. It seems to be the protocol of a lot of neurologists now to do one and send home but IMO this is to the detriment of patients, I have heard people get termendous headaches if they do too much.

nicechick!

Nyberg wrote: »

I have a quick LP question. My mum is due to have one in Sept. Her and i both see neuroligists in London (bad experience with them in Ireland) They want to keep her in overnight after the LP and have advised not to fly until 2 days after. Has anyone had to stay overnight for LP? & How bad is the headache after?? They're testing for Lupus or CADASIL. Oh she's 74

I didn't have to stay over night but if I had known then I would have made them make me n my opinion the longer she stays still after the better! Some suffer from a light/dull headache but if it persists further action may be taken and I agree I definitively wouldn't fly after. I believe its one in every five or six that may get headache so she could be lucky and not have any discomfort. I would say based on her age is why they'd keep her overnight your better off asking the consultant.

In my case the headache was so bad & lying down would relieve it temporarily so I needed I think what they called a blood patch, the experience was very painful though there was relief if you lay flat but all the same extremely painful including the procedure to stop the damn headache was miserable as they made you sit up to do whatever they had to do! but relief I was pain free within a few moments

val444

So I am losing my mind a little bit about having to go back in tomorrow to get the LP done again. I was fine up until today, but now I am properly panicking.

Has anyone ever been sedated for an LP in Ireland? I have looked online and it seems to be pretty standard in the US, but in Ireland, it appears that people have been denied this, when they requested it.

I just don't think I can sign up for getting another needle in my spine. I am still bruised and sore from last week!

ElleEm

You'll be fine, Val.

I was panicking and they gave me a Valium, and they let my partner stay with me so he kept me chatting to keep my mind off it. It was sore but I survived- you will too.

The fact that they couldn't get it from you last time means that they almost definitely WILL get it this time. That's what happened to me- but it was over the space of a few hours, I preferred that than having to wait a whole week like you

Make sure you have anti- inflammatorys at home for the following few days, and take it easy.

Breathe your way through it, it will be over in no time and once they have confirmed MS, hopefully it'll be the last LP you have to have x

val444

Thanks.

I know it will be fine. People go through worse! I am just finding it so hard to calm down about it. For reasons I won't go into detail about here, I am having some of the most stressful weeks of my life right about now, for example, I am about to close on my first house! among other things.

And i experienced my first symptoms of MS in March, so it has all happened very fast!

I think what is hard about this is that until I have a definitive diagnosis, I am not telling anybody. To be honest, I don't think I will tell anyone until I absolutely have to. So that means not talking to friends or extended family about it, putting my game face on while at work, and even telling small fibs about where I am and what I am doing!

Once tomorrow is over with, at least I have some good things to look forward to!

xxshebeexx

I had one done two years ago, but it took them forever to get it right too! Four different doctors had a go on two seperate occassions and they just couldn't do it. Eventually, the consultant did manage to do it successfully (after me bawling and screeching on the bed - they had to stop several times because I was in hysterics.. I'm not usually bad with needles - I'm diabetic so I'm used to them, but the pain of the LP was unreal!). After, I wished they hadn't done it because of the headache. I did the whole lying down for four hours afterwards (to be honest I was in no shape to be doing anything else!) but my head was splitting for the next three days and I couldn't even sit up or open my eyes. I hope not everyone's experience is like that!

In the end, the result was clear anyway. Never ever again!

GhostInTheRuins

Ah lads! All these horror stories are hardly going put the poor woman's mind at ease.

ElleEm

GhostInTheRuins wrote: »

Ah lads! All these horror stories are hardly going put the poor woman's mind at ease.

She has already had one attempt so she's aware of what it's like!
I preferred hearing all this stuff before my LP so that I was mentally prepared.

xxshebeexx

GhostInTheRuins wrote: »

Ah lads! All these horror stories are hardly going put the poor woman's mind at ease.

I wouldn't have minded knowing that mine wasn't the only unsuccessful one when I got it done! The doctors seemed to think I was a completely abnormal case!

LegacyUser

Hi Val

I had exactly your experience yesterday. Am so sore today too and can only just sit up confortably now at 24 hours after. I also have to go back and have it done under xray. I cannot fault the docs tho they were lovely and when I did get upset at the end were even nicer. Don't let it get you down it just one of those things and after a few days we will forget it like labour some friends tell me!

Take care
Jules

ElleEm

xxshebeexx wrote: »

I wouldn't have minded knowing that mine wasn't the only unsuccessful one when I got it done! The doctors seemed to think I was a completely abnormal case!

I felt the same, reading this thread has put my mind at ease a bit.... although if I'm honest I feel like less of a hero than I did when I thought I was the only one who had a tough time with the LP

val444

So its over! Not nearly as bad this time. I asked about sedation, doctor really wasn't going for it so i cried until she gave me a valium!

Deffo think lumbar punctures should be done under x ray guidance as standard. Although still unpleasant, it was much easier and successful!

No headache as of yet but it has only been two hours so fingers crossed!

val444

Whoops. Double post.