My MS neurology team want me to switch MS meds ( I now have to as I'm high risk of fatal brain disease) but the new med will require a lumbar puncture. Having seen the registrars who do this every month I'm very concerned about their competence ( one was unable to cannulate my arm) but I'm also concerned it will trigger RLS/ make it worse.
Has anyone had a LP and if so, how did it affect your RLS?
No effect and I can only recommend a small narcosis, so that you don't witness the procedure. It's not funny at all - especially when they hit a root nerve.
Aagh, Didn't they numb the Spinal area before inserting the needle in the spine? How long did you have to stay lying down in the hospital?
They numb the area, but it doesn't affect the root nerves at your spine. It's only to avoid feeling the needle being put into you. They needed 5-6 attempts before I collapsed and the procedure was repeated with narcosis the next day. Normally, you need to lay down for an hour or so to rest, because you will be exhausted/stressed.
Lying down is because there is a hole left in your meninges, but more importantly because there will be a reduced amount of CSF in your spine and skull in which the brain "floats".
A serious leak/loss of CSF means that if you were to stand, your brain won't float so well and might slip down into the spinal canal.
This is known as "coning" and it can be fatal.
Lying down is a precaution against this, nothing to do with exhaustion or stress.
If a needle hit a root nerve it would probably damage it. It wouldn't just be an acute pain.
It sounds like you had a particularly bad experience out of the unusual.
No reason for scaring anybody else from having a necessary and routine procedure. How is that helpful?
They're only introducing a needle into the meninges around the spinal cord and not actually introducing anything, just taking CSF out so it shouldn't do anything to RLS.
It may be easier to do a spinal tap than put a cannula in. Veins are smaller and squirm about.
Reassuring to be told they could hit a nerve, NOT. I imagine that rarely happens.
It used to be you had to lie down for 12 hours. I don't know if that's still the case.
I've seen patients lying down for around 3 to 4 hours in the infusion lounge and also seen several failures where the Registrar has failed to get the needle in the correct place, as evidenced by Ebi above. My fears seem justified.
OK be afraid.
😊 I'm terrified.
I had one 3 years ago and it was really no big deal. But, I live in the US and don’t know if they do it differently where you are. Ours are guided by fluoroscopy. All I felt was pressure, no pain. I don’t remember how long I had to stay afterwards but it wasn’t more than an hour.
Oh Jools my heart goes out to you. ❤My son has had several lumbar punctures without any difficulty. I agree someone with skill/ experience would be great. Could you afford to pay an experienced neurologist privately who you could then trust?Sending love and prayers for a straightforward procedure. X
So sorry to hear. Hope all goes well for you
Don't listen to everyone. Some people like to scare you. Have you heard the giving birth stories
Yep but I just can't bear the thought of a needle in the spinal column. If they miss, not great and the registrar I witnessed messing up the one I saw had been rubbish at getting a cannula in my vein. The nurses were shaking their heads. Aagh...
Scary stories are probably more common than "mundane" stories. After all stories are more interesting when things go wrong.
"Yeh, it went OK and everything was fine, is pretty boring really.
A few bad stories about any procedure soon get round, but in comparison to the majority of thousands or millions who've had the same procedure without problem, the bad stories may be more convincing than the good stories - that you just don't read e.g how many RLS posts do you see like this.
GOOD NEWS ABOUT RLS.
I saw a GP a few weeks ago. He said according to the RLS diagnostic criteria. He took blood tests for iron levels and said it would be a good idea to start on over the counter iron supplement as my ferritin was under 75.
He's going to help me stop taking citalopram and is arranging CBT. He recommended I take a drug called gabapentin.
After 3 weeks, I 've found this working.
So what is the benefit of a CSF fluid assessment?
What are the risks, and what are the statistics on their occurrence.
These should explained and given in printed form before asking written informed consent.
The score so far.
Bad stories : one
Good stories : none
Scary.
My intention has never been to scare anybody. Joolsg and I already had some private conversations, so I just wanted to share my experience as honest as possible with her. I just won't do it again while being awake.
And I'm extremely grateful. I have witnessed several failed attempts at lumbar punctures because they perform them in the same small neuro lounge I attend every month for the last 12 years for my MS drug. Some go smoothly, but many don't and I see the nurses shaking their heads. Some Registrars are better than others.I would prefer to be asleep for the procedure!
Dear Joolsg - Sorry to hear of your troubles. I have not had this experience myself but when I was in hospital earlier this year there were two ladies in my ward who had this procedure. They were kept in overnight and lying down. They were not in too bad form afterwards but both complained of headache and some pain at the site. They got pain relief and as I said they both seemed in reasonably talkative form. As none of us were allowed visitors at the time we just supported each other and chatted together. I had been admitted after my Astra-Zeneca vaccine went sadly wrong for me - causing severe and repeated migraine headaches so bad that I was talking nonsense and doctors thought I had had a stroke. Fortunately brain scan was OK and it was just a very severe reaction to the AZ vaccine. I could not get another.These two ladies were being investigated for severe headaches and one had neurological symptoms - I don't know what. They were both in the age group 45 - 55 years I would have thought.
I send you good wishes and will be thinking of you. You are so helpful to us all and so ready to impart your knowledge. Listen to Elfindoe and don't let others upset you.
Love Jelbea
Thanks Jelbea. So sorry to hear about the bad reaction to AZ. I have 2 friends who were given a 'hot batch' of AZ and like you, cannot have a second dose. I'm making enquiries about atraumatic syringes which increase effectiveness and reduce risk but hospitals don't use them for some reason (cost is the same).
I'm sure if it was such a painful procedure they would knock you out. Not with anaesthesia but a valium shot. In Greece where I live they do this for colonoscopy. And surely they would have a properly trained doctor doing it. Is it a good hospital where you go.
Dear Joolsg - I looked up about the atraumatic syringes and it is very interesting. Perhaps your consultant would be able to help. I do hope so. Certainly some diazepam would help in the circumstances. I wish you well.
Hi Jooks. I’ve had 2 lumbar punctures. Neither fired up my RLS but they were at a time earlier when it wasn’t too bad.I was lucky as an experienced consultant did them. I didn’t like the thought either but they were ok. After the 1st I went back to work an hour later!
Remember you have to give consent so you don’t need to consent to what you don’t want.
It might feel awkward but you could try to say you don’t consent to the particular registrar doing it & why.
What is the new treatment that needs an L & why? I have never heard of this need.
I have to switch to Ocrevus as I have tested high positive for John Cunningham virus after 12 years negative on Tysabri. My risk of PML, fatal brain disease is now very high.The Lumbar puncture is to check I don't have PML in spinal fluid before commencing Ocrevus.
I know all the nurses really well as I've been going every month for 12 years and am there for 3 hours. I'll discreetly ask which doctor is the best at performing LPs and ask for him/her IF I decide to go ahead.
Oh my goodness I don’t know anything about any of that & the virus etc. It doesn’t sound nice to have to contend with.I wish you all the very best
Oh Julie I'm sorry to hear of this complication to your MS. You have enough to cope with. I have had a LP, around 5 years ago. A consultant did it. It was sore but nothing like as painful as some of the experiences I had. I had a migraine like headache for several hours but was OK the next day. And I agree half the registrars and consultants cannot cannulate without multiple attempts. I had a consultant a few weeks ago who couldn't hit my radial artery to get arterial O2. I don't have much faith in any of them!!!
Why don't you talk to the consultant again to get some more information and reassurance. You could ask him or her to perform the routine procedure themselves as you ve seen problems with your own eyes. They can only say no! Things often look and sound worse when you are looking on. I work in the NHS. By the way I ve helped with hundreds of epidurals and spinals with barely any problems.
Good luck.
Thanks Iris. I will do.
I had a lumbar puncture about 3 weeks ago and it was fine. The registrar 'brushed past' a couple of nerves as he was putting the needle in but he had warned me this might happen and the pain only lasted for a second or so. I was being distracted throughout by a very chatty nurse so maybe that helped.
Thanks for that reassurance. I may have to face my fears....
