Hi everyone, has anyone had a spinal tap done? What was your experience? I need this test done but I'm very afraid.
Thank you
Spinal tap : Hi everyone, has anyone had a... - Neuro Support
Spinal tap
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Teresaq
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I’ve had half a dozen of these over the years: based on all the horror stories, I was expecting it to be awful, when in reality I’ve genuinely had blood tests that hurt a lot more. Even when it took multiple attempts on one occasion, it still really wasn’t that bad. The last one I had, not only did I barely feel it, I left feeling better than I had in months as they drew some fluid off which somehow made my persistent headache better (my pressures are supposedly normal, so the letter says they can’t explain why it helped).
Teresaq in reply to
Thats good to hear. What about the after effect did you have more pain one another days. Did the check for iih? I'm have head pain and dizziness but now I feel weakness in ny legs, maybe anxiety.
in reply to Teresaq
I was told to lie still on my back for at least an hour after each one to avoid headaches, which seemed to work. Never had any other effects or problems from them in the days that followed. I think aftereffects sometimes depend on your underlying issue - on two occasions I had meningitis anyway, so was feeling very unwell already. I don’t know that I could have felt much worse, tbh. The other 4 were also still fine, though, and I didn’t have any problems. Sometimes we can make things worse for ourselves by worrying about them. The test for IIH is just measuring the opening pressure when they do the lumbar puncture, which is a standard part of any LP: I’ve had two high, and two high-normal, but the two high normals were when I had a suspected csf leak, so can’t be trusted. The highs were during the episodes of meningitis: they were supposed to do another one before I was discharged after the second time I had it to see what my pressure was like when well but never did. I have headaches 24/7, it’s just the intensity that varies: been that way for more than 15 years now. Some of it is cranial nerve damage from neurosurgeries in 2011 and 2014 for a chiari malformation (which was how I got the bouts of meningitis), but a lot of it isn’t. I’ve moved to a different part of the UK and am waiting on a referral to local pain management, but as nothing has worked to date (other than that lumbar puncture 👀👀), I’ve basically had to learn to live with it. 🤷♂️
Teresaq in reply to
I have nerve damage in my neck due to thyroid surgery. Many nerve blocks and steroid shots. My pain management doctor said I have occipital neuralgia that triggers to my head...aka which also pressure from migraine that really issue that bothering me is swaying feeling in my head, im constantly rocking in my head. Its just one day at a time. Picking and choosing what to fix first. If you don't mind me asking have you tried nortriptyline for migraine or pain in general?
in reply to Teresaq
I’ve tried amitriptyline, gabapentin, pregabalin, nerve blocks, Botox. All the usual painkillers goes without saying, including tramadol and the like. CBD oil. Only thing I haven’t tried is patches like fentanyl, but I’m a single dad to a disabled teen, so I have to be sufficiently functional and know from taking opiates that it’s not a helpful answer in that regard. I have occasional migraine complete with endless vomiting for the duration, probably only 4 or 5 a year, but between the other various types of headache, the pain is constant. I completely get what you’re saying about prioritising what to fix; I’m currently sat in ophthalmology due to 12 months of eye pain/vision problems that are exacerbating my headaches, and they’re saying they think this is all neuro-related and looking to refer me to them. I would just like to know what’s causing various problems, and ideally some way to reduce the pain. I’ve accepted I will always be in pain to some extent, but live in hope it gets better than this at some point 🤷♂️
Qualipop in reply to
I will not recommend opiates to anyone because after many years,the long term effects are horrible but I've now been on Oxycodone for 30 years with absolutely no drowsiness or feeling "out of it". I had a private driving test to make sure I wasn't being adversely affected, so for short term use don't be put off them. They can be very useful and very effective. . I was allergic to oramorph; itching everywhere and tight chest but oxycodone is just fine. Anitryp, nortryp, gabapentin etc didn't even touch the sides .I was a total zombie on amitrip and gaba made me seriously suicidal.
bridgeit in reply to
Hi Charlie, I had the same thing. My CSF pressure runs in the 'normal' range but my (excellent) neuro-radiologist said that it's obviously 'high' for me owing to symptoms that were relieved when some fluid was withdrawn. Just goes to show that 'normal' is textbook jargon. Each of us is different and manageable CSF pressure ranges can vary wildly. As the CSF is reckoned to renew every four days or so, that might explain why headaches can vary in intensity, along with certain things that stimulate CSF production such as caffeine. Do you have a frequently runny nose by any chance? Watery, salty fluid? I did. My specialist said that this can be indicative of a pressure-release effect, where a nasal CSF leak acts as a safety-valve. Seems to me like you have a high CSF pressure issue, whatever your readings! There's a specialist in Cambridge who I think is the UK's leading expert on IIH and CSF pressures owing to intracranial anomalies. I can let you have his name if you like and you've not already seen him, but be advised that a referral on the NHS is unlikely and private is not cheap. It seems to me that the NHS has a lot of catching up to do both with diagnosing intracranial hypertension and its effective treatment/management.
in reply to bridgeit
Haven’t got time to reply properly right now, but just wanted to say this is one of the most helpful and relieving replies I’ve had in a while. I’m well versed medically, I search for and read case studies and papers on a regular basis around a variety of issues and conditions my daughter and I have, but this is the one area where I haven’t been able to find evidence to back up my belief that my ICP is definitely part of the issue. The idea that csf renews roughly every 4 days and thus explains varying intensity of symptoms has blown my mind. Opthamology are pretty convinced it’s neuro and most likely a chronic icp problem, so are referring me on the back of seeing me a couple of days ago. Fingers crossed that this time we get there.
bridgeit in reply to
I'm pleased the info I've gleaned is helpful Charlie. Here's some suggested further reading for you either written by or based on work by the guy who helped me. Read the papers in order:First: Stent Re-Distribution of Cranial Venous Outflow.
researchgate.net/publicatio...
Then in order:
1. Chronic fatigue syndrome idiopathic intracranial hypertension. Different manifestations of the same disorder of Intracranial Pressure.
europepmc.org/article/MED/2...
2. A paradigm for chronic fatigue syndrome: caught between idiopathic intracranial hypertension and spontaneous intracranial hypotension caused by venous outflow obstruction.
tandfonline.com/doi/pdf/10....
It's heavy going, but well worth the effort if you're suffering. Information is key. In my layman's opinion, there's really only one other person outside of China who's on Dr Higgins' level and that's Dr Wouter Schievink at Cedars-Sinai in the USA.
You can read more about Dr Schievink's work here: bio.cedars-sinai.org/schiev...
You might also find this forum/link useful/supportive if you aren't already a member:
csfleak.uk/news/q-a-with-dr...
I hope you are able to move forward with a resolution for your health issues, rather than the usual and sadly dismissive 'idiopathic' (we don't know) that seems to be the generic diagnosis from most medics across assorted specialisms who are not well informed on this topic and don't really "do" multidisciplinary.
Good luck!
Hi Teresa. I think it's natural to be fearful of a lumbar puncture. I've had two in different hospitals and both times I was nervous. The wording on the consent form they asked me to sign didn't help! However, all went well.The procedures in my case were carried out by an interventional neuro-radiologist (not an anaesthetist) using guided X-ray for precise needle placement. I had a local anaesthetic so that I did not feel the needle insertion. On the second occasion, something just 'tapped' a nerve (so I was told) when I got a sudden electric-type shock that ran down my right leg! That feeling was short-lived but memorable.Everything was fine, both times.
Afterwards, on both occasions, I was wheeled in bed back to the ward and advised to lie still in the same bed slightly upright at a 30 degree angle for four hours before moving. The radiologists were quite specific about that. I was also advised to drink lots of water and take two paracetamol if I felt a headache coming on. I had no immediate headache, but did need some paracetamol a few hours later.
I was advised not to drive home after both procedures.
My advice is to try to relax, but do go to the loo right before you have the procedure as you really shouldn't move around for a while afterwards. Make sure drinking water and paracetamol are to hand, just in case you do develop a headache, which is normal.
Most of all, don't worry; they know what they're doing.
