Hi, I was diagnosed with transverse myelitis possibly ms in November 2010 following MRI scans that showed a few small white area and a negative lumber puncture. I am now in hospital again with similar symptoms but now where near as bad as last time. My MRI has come back again this time with a few small white areas (the docs are waiting to get my previous scans and results from the other hospital as I’ve moved recently). The docs want to do another lumbar puncture this time but I am really really reluctant as I had an extremely bad reaction last time and was bed ridden for weeks on morphine then was unable to do much at all for a couple of months after that. I really don’t want the lp this time as I can’t handle being the way I was past time again. I don’t just don’t know what would be best and wondered if anyone had Amy advice?
As you know the actual procedure is not painful; 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. See GP; http://www.rcoa.ac.uk/docs/hesa.pdf this is rare.
I would definitely suggest you wait for your previous MRI. As a matter of interest you can purchase a copy of your MR Images; about £10.
Then we come down to the actual machine. NHS machines are invariable 1.5 Tesla; to get a reasonable image you want at least 3 T machines.
You don’t have to agree to having an LP - it’s not completely necessary for a diagnosis of ms. Give it some more thought perhaps but go with what you want to do.
Sorry I’ve not been any help!
I think that you should not hesitate to stick to your guns if you do not want another lumbar puncture, and it is not an emergency situation that requires one. It can be hard to be as assertive as usual when one is an in-patient! If they explain very persuasively why they want an LP and you are convinced and say OK, that’s one thing. But please don’t be steam-rollered into anything you don’t want. Alison x
Thank you everyone. Last time I was laid down for over 6 hours after the lp and I drank like there was no tomorrow but still ended up with the problems mentioned above! The actual procedure last time was only uncomfortable not painful it was the head that caused me the problems! I’m still waiting to see if they’ve managed to get my previous results from my old NHS tryst but at the minute I’m holding out on having it done. Thanks for the advice, it helps having people to chat to and ask silly questions etc