So I had my lumbar puncture today and wanted to post about how it went. I went expecting the worse however it was much much worse than I had expected. Don’t want to scare anyone that is due to have it - most people don’t have the problems that I did and the reason I had such a hard time is that I have scoliosis. So got there at 9:45 (was booked in for 10 o’clock) trouble starting almost immediately. They had to take blood from me which I wasnt pre warned about and I have terrible trouble giving blood as I don’t have any veins! So they tried and no veins accessible in either arm. They contacted the gp and got my previous blood results faxed over. Even with those results they needed a further 3 and a half tubes of blood so ended up taking it from my hand - not pleasant! Anyway then a while later was taken into a room for the lumbar puncture (dad came in the room with me and sat in front of me). I had phoned in advance to explain that I have scoliosis and that it was advised by the neurologist that an X-ray guided lumbar puncture may be advisable. Well they took no notice and the doctor said that she had done loads of lumbar punctures and was confident it wouldn’t be a problem. Anyway to try and cut the story a bit I had her and another doctor attempt it - overall it was about an hour and a half of them trying and about 30 needle attempts! They decided that they needed the registrar to come and try and that they would only attempt it 2 more times and if they didn’t get it then they would rebook for another day with an X-ray guided lumbar puncture. The registrar came in and thankfully got it the second time with a lot of poking and prodding and also drawing on my back with pen to help him work out my spinal curve. Well the pain was horrendous of all the needle attempts -32 in total! Thankfully haven’t got the lumbar headache as laid down for about an hour and 45 minutes and had lots of coke. However back pain from the whole experience is horrendous and lying flat in bed now. I know this is a long post and sorry if it sounded like I was rambling along - just want to say if anyone is due for a lumbar puncture and has scoliosis then insist beforehand to a guided X-ray lumbar puncture!!!
oh my goodness im sorry you had such a horrible experience (((big hugs)))
Thank you - so hoping that this back pain goes soon as its awful
THATS SHOCKING!!! Hope you are well now after all that .
Oh Karina This sounds horrific - why don’t these people listen when they are told something. How dreadful that you had 32 needles poked into your back.it’s dreadful! Hope you recover quickly. Teresa xx
I guess advice for others in a similar situation is to insist on a X-ray guided one! Thats terrible specially as you told them as well.
I hope you feel better soon.
Thanks all for your kind words. I’m just hoping that the pain will ease off a d vanish tomorrow but somehow doubt it! Also keeping my fingers tightly crossed that I don’t get the lumbar headache tomorrow
Sounds like an awful experience to go through and I am sorry you have had to deal with this.
Thats awful that they could actually keep doing that to you, must admit you are a more patient person than me, I think I would have turned round and decked them after half a dozen needles.
Its the one thing I’m not looking forward to if I need to have one.
Most people don’t seem to have too bad an experience - I’m just a rare case and completely unlucky! Seems to be the case for everything and doctors are all very confused with me as seems like lots going on and doesn’t seem all ms related! I need Dr House!
That is awful, poor you.
I really hope you are feeling better asap x
Hi hon, That sounds pretty traumatic- my first one failed and I had an x-ray guided one two weeks ago. Much quicker and no nerve pain (just those short sharp shocks). I drank lots of water as advised but I did get a belter of a headache 36 hrs after so perhaps keep your painkillers nearby. Not everyone gets the headaches So hopefully you’ll get a reprieve after your experience. Take care xx
I had a bad time to with mine! Would never have another ever. Bloody horrible x
This pain in my back is really unbearable - is it normal to have this much back pain?
That doesn’t sound right Karina. I would either 'phone the dept you went to yesterday and explain and see what they advise or just go straight to your GP. Don’t leave it as you could get some relief. Hope you recover soon. Teresa xx
Im so sorry you had a bad experience
Hope your back starts to feel better soon
I will try the doctors at 9am and see what they say - paracetamol didn’t help yesterday at all, taken an ibroprofen this morning but no relief at all!
Like Polls experience its another example of shocking treatment, and I cant believe their arrogance in ignoring the xray guided advice.
It shows that to them its a procedure to perform with no thought of the person they are doing it to.
I am so sorry you were put through this an yes I would insist on a doctor seeing you.
Fingers crossed you get over it soon,and that your gp has something to say to the hosp about your treatment
Thanks everyone for all your lovely words and kindness. All I’m hoping for is back pain to vanish and not to get the dreaded lumbar headache. Next week I’ve got my VEP and SSEP - what can I expect with these? Do they normally take blood before those tests?
Wow, I am so sorry to hear this, I had something simular,
At Southend University Hospital. I had 3 women come in and say you have an audiance, then my god the pain was unabreabe. MY wife was with me.
They said the only risk is infection, she had to change her sterolised gloves 3 times, she didnt know what end to put th tube into what end, didnt know how far to put the iodine up my back, she missed several times, had the tap turned the wrong way and spilt blood and spinal fluid all over me and the bed, the women in charge kept going outside on her phone. It turned out she recons she had done it 3 times before, I dont believe her and told her so, I wouldnt let her take my bloods, it too over and hour also in the fetis position, being 6ft1 and curled up for so long felt impossible and when it was over Infelt violated.
I wouldnt wish this on anyone and I am sorry you have had it, I feel your pain and hop it never ha to happen again.