I have an appointment with a neurologist in a few days and I’m predicting that they’re going to want to order a spinal tap. I am a bit uncomfortable with this because they are not without risk. I’ve read on here of people developing back issues after them. I’m six months into this and have an MRI an other tests. It’s just taken me a long time to get to a neurologist because of insurance issues. Anyway, what is everyone’s take here? I guess the concern is that after six months I could more easily have a false negative, and on top of it complications. I already have enough problems! So is it worth it?
I’m no doctor but from my understanding is that after the acute stage of GBS a spinal tap will not show anything, the marker for GBS goes away as you start healing. However if it is cidp then then I believe that it will show. Again I am not a doctor so ask your Nero lots of questions and if they cannot answer find another. No need to wast time teaching your doctor, sorry for the rant, my Nero was upfront and said that they can only give me drugs to mask the pain and monitor the recovery, and they cannot do anything to make this recover any faster than what your own body will do. Then they wanted me to have a nerve test, very painful so I have been told, so they can monitor my progress and To pay them 1000.00 for each test.
Good luck with your apt. Stay strong
Idid one and it was not a big deal. It was more scary then anything. It really didn’t hurt. The only thing was I got horrible headaches for about four days. The spinal fluid has to build back to support your brain. I just stayed in bed as much as I could.
I have had two spinal taps and had no problem with either. stayed flat of back for four or six hours can not really remember.. then was to drink lot of caffeine, lot of rest, did well. first one was for the G.B.S. and last one in march of 2014 C.I.D.P. good luck unlike me find a nero that knows whats up. good luck stay positive
Hi Nostromo
I had my spinal tap in hospital to help them with my diagnoses. I was absolutly terrefied which was so stupid of me. I have complete faith in my doctors and will take any type of examination they say is necessary.
Thanks for the replies! So it sounds like I should proceed with caution, but it may be worth it. I am very skeptical of the health care in my area. It’s not exactly top notch so I have to tread carefully.
I am same way with health care in my area I believe I am.headed to the big t town
I had a spinal tap when I was in the hospital for the first time. And it was done by a student, with my neurologist's guidance because I was at a teaching hospital. I was nervous because I was only the sixth spinal tap this person had done, and I could tell she was nervous - but it wasn't a big deal. I was nervous for nothing, didn't even hurt. Had a headache the next day, and stayed flat on my back to help with that. Good luck with it - hope you get some answers.
WI forgot to say that I “had to” drink two bottles of coke after my spinal yap which for me was no. Problem at all. I had no after effects.
For me it is worth the risk to know that I was being diagnosed correctly. The tap itself was uneventful. I however had the tap headache similar to BrokenBear. I could not sit up for long periods without horrible headache. This went away after several days. There is a separate procedure that can be done with a blood pack (or something), should you get the headache thing.
As I understood it, the spinal tap was an important part of the diagnosis
I found the spinal taps more scary before, than during. You probably wouldn't do it for fun... but it's not as bad as you might imagine. And my experience was not great.
Before they do it,they anesthetize your lower back - you don't feel anything much past this point except some creepy kind of prodding about in the lower back area.... Unless, you get zapped. With some people, the end of the tap brushes the spinal cord (overshoots the very small cavity around it containing the fluid) and they get a real fizzy zap right down the leg. I got it, and it's very fast, it's surprisingly strong, but it's kind of gone before it hits you.
The first attempt failed. A junior registrar who was clearly nervous of the whole thing, tried and missed twice and then gave up. I knew I was in trouble when she brought out the measuring tape and a calculator! I had a some twingy back pain during the evening, but did as they advised (drink fluids and try to lie flat), and was a bit tender, and a bit headachy, but ok.
The second attempt was very clean. They took me to a radiographer who could use scanning to guide the tap for a perfect result - pretty much guaranteed. The radiographer didn't feel the need to use the machine as it happened... he did it by completely by eye: Very confident (he does them all day long), very quick and with no acute unpleasantness or discomfort... well... other than getting zapped at the end I guess.
Pretty much the same on both evenings after the tap - so (for me)not a lot of difference between a fairly bad fail and a zen master.
To balance my experience; I have met people who've had very unpleasant experiences with them, and while it was useful for me, it's not something anyone would want if there were an option.
The electrical tests are probably a more reliable indicator if your Neuro already has suspicions. I had no firm diagnosis until the electrical tests were done (both for the initial GBS and the subsequent CIDP). In both cases the Drs administering the tests were able to recognise the correct results immediately, and with sufficient confidence to confirm the diagnosis on the spot.
The tests are not particularly comfortable - but that's not code for 'hellishly painful'. During the Nerve Conduction Study you get zapped along the forearms and shins. Some quite solid kicks, which you will surely notice. Your limbs may flail about a bit... but I wouldn't call it painful. They measure out a known length of a nerve and place zappers at either end. The machine records the speed at which the nerve impulse travels along that section of nerve. This gives a measurement called the nerve conduction velocity from which they can reliably estimate the extent of demyelination along that nerve. The test also measures various reflections and electrical artefacts created as the zap hits the nerve, which can tell them about the overall condition of the nerve right back to the nerve roots.
There is a second part called a Needle EMG. They tape a sensor to a muscle, then stimulate the muscle with a needle. The needle is very fine - like an acupuncture needle and you get an electrical tingle from it while it jangles the muscle. It's not any worse than acupuncture, but they do jab around a bit. They also 'listen' to the muscle - you hear the electrical noise of your muscle through a speaker. The data tells them about the condition of the nerves as they branch into the fine fibres that control muscles. This affects muscle power and speed of responses, so the results can help them to measure and understand the extent of the weakness, the fatigue and the tremors/wobbles you will be feeling.
When I (eventually) got hooked up with a Neurologist who specialises in GBS and CIDP, he was only interested in these tests. The spinal taps can give an important early pointer, but it's the electrical tests that seem to give solid confirmation of any suspicions raised by a spinal tap.
I’ve had all the tests that James mentioned plus an hour long MRI scan of my back to rule out that it was it causing the problems I found the last the the most unpleasant because of having to lie in one position for so long.
I think James has given a very accurate description of the tests.
My spinal tap was done by my neurologist and I did have the zappy thing like James mentioned for a second too. That wasn't too bad. My problem was that I got the spinal tap migraine and ended up in the hospital. I found out later that I should have had the blood patch since I probably had a leak. I think a doctor and facility familiar with GBS and related problems would have made a big difference.
Tarhealing said:
My spinal tap was done by my neurologist and I did have the zappy thing like James mentioned for a second too. That wasn't too bad. My problem was that I got the spinal tap migraine and ended up in the hospital. I found out later that I should have had the blood patch since I probably had a leak. I think a doctor and facility familiar with GBS and related problems would have made a big difference.
Thanks for the new replies! And thanks James for the solid run down. I am also slated to have some of those other tests. I go into the neuro tomorrow and appreciate everyone's input. It definitely makes me feel more prepared!
I saw the neuro today. Interestingly enough she too was more interested in the EMG than a spinal tap. She says it’s most likely AIDP/GBS/MFS but she said to could be a variant of MS called Devic’s. Which is disturbing of course. But I looked that up and am not sure how Devic’s applies. My optic nerves are completely healthy. I just had the binocular double vision (paralysis of 6th cranial nerve and classic MFS symptom). Anyway, I didn’t want to argue with her and I don’t mind being thorough and ruling things out.
The spinal tap is the best tool for diagnosing GBS. I had mine done by a radiologist. The only discomfort was getting in the correct position. He used a fluoroscope to guide the needle. They are looking for the level of antibodies in the spinal fluid. 15-45 meq/ml is normal. After I scored a 48, I got an echocardiogram to see if I could take the next treatment. The next treatment was 7 pints IVIG, intravenous immuno-globulin for each of the next two nights. Either IVIG or plasmopharesis is used with equal efficacy to stop the progress of GBS.