Lumbar punctures - any advice would be gratefully received. Also problems travelling.

[Wellington]

Hi,

Was told yesterday by my Neurologist that I have to have a lumbar puncture due to my right leg not working, and I am quite scared. Is it as awful as some people have told me? The hospital that will be doing it is over 2 hours away and I stress about travelling because of bowel and bladder problems as well as being in terrible pain and feeling very unwell. Would also like to know if other people have major problems travelling to appointments etc. because of Behcets. I can only just manage appointments which is a nightmare in itself so could never book a holiday and that is why I haven't been on holiday for 6 years.

Many thanks, Jo x

[Herbiv4]

Hi there, I had a lumbar puncture at the Royal Free Hospital.

I had to travel down from Scotland by plane for a days worth of tests that included a lumbar puncture.

There is a risk of post lumbar puncture headache (PLH) which I experienced at a Travelodge not far from the hospital during the 12 hours after the procedure.

I should have stayed in over night and the hospital did have a wing for that purpose but of course that would have cost them money so I was told I "could go home".

I spent the following 3.5 days in hospital after making it back to A&E where I was sick on the reception desk moments after arriving.

I was put on a random ward where nobody knew who I was or why I was there.

They made sure that I hadn't picked up meningitis.

I am a former diagnostic radiographer so I know a few things about the NHS.

I know that experiencing a PLH is truly awful but suffering such a side effect is not common.

The procedure itself should only take 30 to 40 minutes at most but can take longer.

With the benefit of hindsight I should have asked that I be allowed to stay overnight and I understand that the Behcet's specialist centre in London has such facilities so your difficulties should be respected.

In the end I had to abandon my flight back to Scotland and a relative of mine escorted me - propping me up and she took me to the station where she bought my ticket and made sure I got on the train.

I took a jam packed train all the way back to Glasgow.

A fellow passenger saw that I was ill and offered me his water. I spent nearly all the journey with eyes shut and head and shoulders on the table to stop feeling like I was going to throw up.

It was a total nightmare as I had to then get my car from Glasgow Airport.

I was still suffering the PLH that went on for another 2 weeks.

I lost part of my hearing but that slowly returned.

That was my experience but hopefully your experience should be totally different.

Best of luck,

Stephen.

[Hidden]

I have had many LP's, some pre-planned, others as emergencies. Some threw up a few problems, some didn't. I've had them done in my hospital bed, in a side ward, an operating theatre under xray... I’ve had to lay flat for 12 hours, been allowed up in stages over 1 hour, stayed overnight, gone home same day – it can vary so much your best bet is to discuss it with the department you will be attending. They are best equipped to advise you. You can find out who will be doing it – ie a Registrar, Consultant, Anaesthetist, ask where it will be carried out, what the pre and post care procedure is and so on, alert them to any problems you foresee, discuss the pain relief you are taking now – they may advise increasing it for the journey for example and at the least will be aware of it before they begin. Thus be fully prepared beforehand and hopefully less stressed and know what to expect afterwards.

In the past I have planned a route that incorporates services which have loos. I allow plenty of time so I can rest when I arrive at the hospital (by prior arrangement) and not have to launch straight into the procedure.

For the journey home I take a V pillow and place it behind my back. I can adjust it so that the LP site is not touching anything, or is against a soft pillow. I notify my GP that I am having it done and get the hospital to ring the surgery or email when I have been discharged in case I need medical attention post LP.

[behcetshurtsbeyondwords]

Hello,

I've never had a lumbar puncture test, but I do have much trouble travelling for too long in the car.

It really all depends how I am feeling at the time, like if the pain is already out of control and/or I'm already very nauseous, then I know to expect a very uncomfortable ride. Any little jolt in the car and my pain will spike to such a severe level, that I am in tears.

I haven't even tried to go for a longer car ride on a trip, mainly because I am just too sick to be able to enjoy myself. I would rather just stay home in my own bed, with my puppies, where I feel comforted.

It can be very hard on my system though when I have to go in the car to doctor's appt. or for tests because the hospital and clinic where I go is quite far away, and everywhere in my city, the roads are horrendous-- all chopped up everywhere with huge pot holes and sink holes all over. Half the time, you don't even know they're there, until you've already driven over them and one of the tires falls inside them and you go flying up and hit your head on the roof of the car and then slam back down really hard on the seat!

I can't drive myself (thank goodness in some ways), so at least I'm only a passenger and don't have to worry about driving on the horrible conditions of these roads.

[Steamboat]

Hi Stephen,

I have had many LP's, all in hospital with no side effects.

Many of them have been in ICU where I have been unconscious, there no pain.

Others have been on the ward where I am fully conscious, there was no pain and no side effects.

Looks like I have been lucky.

Good luck with your LP and it sounds like you should take some with you for the traveling problems.I always find taking something to listen to or a talking book helps ease the time, pain and anxiety.

Felicity

[Hidden]

Hi,

Please try not to worry too much (easier said than done I know!), the more you relax throughout the procedure the easier it is for the doctor to get the needle in the right spot first time.

I regularly had LPs as part of treatment for high intercranial pressure. If they are doing the procedure purely to test the csf there will be less chance of you suffering a low pressure headache afterward as the amount of csf they draw off is minimal. It is the drop in csf pressure that causes the post LP headaches. To help combat this lay flat to aid the healing of puncture hole into the spinal column. Also, I was always told to drink caffeine if I was suffering, as this helps to raise the ICP again.

Yes, they aren't the nicest of procedures and being honest some times they can be horrible experiences, but curling up as tight as possible to lengthen the spine and expand the space where the needle goes in helps. To help reduce infection risk, don't have a bath for at least 24 hours after.

From personal experience, if your post LP headache continues more than a couple of days after or is severe, get it checked out as I've needed a blood patch a few times.

Good luck with it. Hope the doctor/nurse doing it "hits bullseye" first time!

[scruffy1]

hi jo

the worst part of the procedure is the local anestethic other than that as long as you relax and trust the medic doing the procedure its not bad as some people make it out to be i had one recently done in my hospital bed and 2 hours later was up and about and as someone said above caffine coffee, coke,etc should ward off any headache good luck with it.

kindest regards

chris

[Ktmc99]

Hi

I hav had a couple of lumbar punctures and I have to say it was relatively painless. I think the worst part was actually the anticipation of any pain. I also had no side effects what so ever. I did ensure I remained flat on my back for 2 hours afterwards to try to counteract any headache and that seemed to work for me.

Kt x

[Wellington]

Hi everyone,

Want to say a massive thank you to you all for replying to my question, it really means a lot. Would like to reply to each of you separately but really not well at the moment so please accept my apologies. Sorry to see that some of you had bad experiences and I am grateful you have told me as I do feel better knowing everything, also the experiences which weren't too bad have made me feel a bit better. Although on the day who knows!! Very grateful for all the advice and will definately use all the tips.

Take care and many thanks again Jo xx