Many here have had it done. I think it is to determine what you do not have. There is probably a better explanation from the forum.

As far as I know, GBS/CIDP diagnoses are all symptom based.

Are you facing a spinal tap?

A doctor might order a spinal tap for too many reasons to list here.

I can safely say this- some people with abnormal spinal taps have cidp, or some other problem. And, some people, such as myself, have a normal spinal tap yet still have cidp or one of it’s variants.

It is as northernguitar guy said- get the test and then get the doctor’s answer.

I’ll say it again. Just because you get a normal spinal tap, with Normal values typically range as follows:

* Pressure: 70 – 180 mm H20
* Appearance: clear, colorless
* CSF total protein: 15 – 60 mg/100 mL
* Gamma globulin: 3 – 12% of the total protein
* CSF glucose: 50 – 80 mg/100 mL (or greater than 2/3 of blood sugar level)
* CSF cell count: 0 – 5 white blood cells (all mononuclear), and no red blood cells
* Chloride: 110 – 125 mEq/L

It doesn’t mean you are normal!

Spinal tap is one of the first things they do to test for CIDP. If the protein count is not 100 or better you probably do not have CIDP.

After a nerve biopsy (taken from ankle) and a muscle biopsy (taken from thigh), the dx was determined by the amount of protein in the spinal fluid I don’t know the final number for the protein but I also remember his stating there was no bacteria, which is important, too.

It was the final invasive test. There were other MRI’s, CT scans, EMG’s looking for the possibility of another dx, but everything together added up to CIDP, eliminating other possibilities. The doc said he used more topical anesthesia than was in the ‘kit’ and I don’t think my daughter even knew when the needle went in. I was there with them when that was done. However, by then she was pretty bad and was not feeling much of anything anyhow.

It is a very good diagnostic tool for the medical professional but everyone is reluctant to undergo the spinal tap.

I think that the above pretty much explained the spinal tap. One thing more, my neuro thought that on top of GBS I might have Parkinson’s. I had shaking in my right hand a lot. Yesterday he called to let me know I had a high amount of lime in my blood that might explain the shadow symptom. He has now ordered another spinal tap. Lime is something that in most cases the blood work doesn’t show unless requested specifally.

Tremors, or shaking happen to alot of gbs/cidp people, my 13y/o has them. Do they suspect lymes disease now? If so, this could be great news for you, antibiotics could be the answer. good luck

[SIZE=2]When they did my spinal tap it took them like 45 minutes to do. The doctor was new and I don’t think she had done very many so I think that is why it took so long. I was super nervous about it so they gave me a shot to clam me down in my IV and then they also gave me a few shots on my lower back so I would not feel the needle. I’m a major chicken when it comes to shots so they did everything they could to claim me down. If she is sacred just let them know and they will work with her. I do not think they should take as long as mine did, it was just because I had a new doctor. Just have her lay down afterwards so that she will not get a headache. They are looking for higher then normal protein level. The blood work is just to help see what is going on and help them rule out factors that maybe causing her to be ill. They want to be certain as to what is making her sick. You both will be in my thoughts!!!
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I had a spinal tap years ago and the “lumbar puncture” I had this time was alot better. I don’t know if they are the same but the practice has come a long way since my “tap”.

Dawn C,

The spinal tap sounds like it would hurt terribly. It does hurt, but really not too bad, and if you have a doctor who is proficient at doing it, it should only take a couple of minutes.

I agree with Tammie about having your daughter lie down immediately after the spinal tap. She should stay completely prone for at least 45 minutes.

It’s important to do this, because it lessens the chance of having a really terrible headache that can last for days.

This headache can be a side effect of the spinal tap. Nobody told me about it before hand, and unfortunately, my neuro didn’t care enough about it to have me lie down at all. I ended up the a killer headache for 2 days because of his neglectful attitude.

Best wishes, and I hope your daughter has an easy time of it,

Suzanne

hi dawn, i’ve had over 7 in the last few years. they shouldn’t hurt-as in pain, just might feel some pressure when the needle goes in and then when the tap goes in. i’ve had some with numb meds first and some without. the numbed ones were alot easier and they were done using the fluroscope-xray type imaging, to assist the dr in correct placement of needle and tap. the whole procedure shouldn’t take more then 30 mins from start to finish. if your daughter doesn’t lay flat immediately she will get a spinal headache–very, very painful. and if she does lay flat for an hour and has a spinal headache afterwards it could be a sign that she has a need for a blood patch-but that would be determined by her dr. laying flat for min of 1 hour allows the spinal fluid to patch up the hole from the tap. it is not one of those sometimes things-it is a must do type of thing. no upright sitting or standing until after 1 hour of laying flat-no pillow or incline whatsoever. the best thing for me was to lay with my legs elevated higher then my heart-on a hospital bed raise the footend a smidge. no lights on and quiet. make sure she drinks enough the day before the lp, it will help her also. filtered water and plenty of it. depending on who does the lp, i found i had a quicker, less side effects and was more comfortable laying flat for the procedure.
the lp shows the protein count, any blood, white cells, red cells, color change, clarity and other tests from the spinal fluid. it can tell a dr who knows how to interpret the results correctly, alot of what might or might not be going on with the body. a low protein count like under 20 is good, where the higher could mean there are problems. for cidp the count is anything 45 or greater, although that doesn’t mean that one might not have cidp if the number is lower-false negatives. there are 10% of people who have gbs or cidp and have less then 45 count.
in case the dr didn’t tell you what is involved in a lp-the needle-you can think of it as the outside part of a pen only alot smaller-is inserted into the space between the L-1 and L-2 or the L-2 and L-3, it goes near the fluid but not into the sack, then the tap is inserted through the needle-like the ink part going into the pen holder-and it is pushed into the spinal canal and the fluid comes out the top end of it, like a really small spiket into a clear glass vial. once there is enough fluid in the vial the tap comes out and the needle comes out and its done. it usually takes 24 hours for the results to be available and sometimes longer. Hope that gives you some more info that helps.

I had one a few months ago and they had to tell me when it was over. They gave me something to keep me from climbing the walls. I had one done years ago and it was not pleasant. This time it was a breeze. Just make sure you let them know how uptight your daughter is and they should give her something.

angel2ndclass’ advise is right on the money.

My lumbar puncture at Mayo was a breeze. They had me lie flat 1/2 hour after the procedure and then gave me a Pepsi. Told me to stay well hydrated and sent my on my way. I had no ill effects whatsoever.

Good luck — let us know how it goes!!!

Leanne

Wow, Cheryl, what a great explaination about the spinal tap!

Will you please explain what a blood patch is too. I have a general idea, but you explain things so well, I’d like to see what you have to say about it. I wish I had known about it when I had that spinal tap headache.

Also, just curious about why you have had so many spinal taps. What additional information are they looking for in your case?

This is one of the reasons I love the Forums – we can learn so much from each other.:)

Best wishes,

Suzanne

Sorry suzanne, i haven’t had to have one of those blood patches.:) i do believe they inject some of your blood into the spinal area. it kind of acts like fix-a-flat, plugs the holes.
actually i’ve had more then 7, forgot a few from my early migraine years:o i’ve only had 5 since aug 05. they all run the gamot as far as protein counts go 43-400plus. of course being as the last 5 were done each time i was paralyzed-it made them painless and carefree, just laid there and the drs did all the work.:D
some were for meningitis, west nile, gbs and i could go on if i could remember what they were for-i’ll have to pick my hubbies brain for that info.
I think I know why my Back hurts All the time!!!!:D

Cheryl,

Thanks for that informative (and entertaining) answer about the blood patch “fix-a-flat”!

If I ever have to have a spinal tap again, I’ll ask them to use the fluorscope. I was so worried when I had the test done, because if the doctor doesn’t hit the right spot, the consequences can be devastating.

Suzanne

Hi Dawn,
This is DawnKevies mom. We just had one done on Tuesday. I highly recommend valium prior to the spinal. If she does not have an iv in, she can take it oraly. The trick is to wait long enogh for the valium to work but not too long so that it wears off, as it did with my son. Staying still is essential. DO NOT let them use a resident! Our attempts lasted an hour and I finally said enough. They can also do it under general or as someone else mentioned with a scope. My son did have extreme pain in his leg when they kept fidgeting with the needle. Sorry to scare you but I think knowing what is possible helps you prepare in the event this happens to you. Good luck!
Dawn

actually if they perform the lp in the lumbar 1-3 area, either between L-1 and L-2 or L-2 and L-3, it is below the important cord function area. they can and often do hit the nerves-which causes a severe burning, stabbing, searring pain to radiate down to the feet. when that nerve is hit you know it right away. the best way for lps are with the scope, not as much of a chance to hit the nerves. with the scope the lp feels like a finger poke in the middle of your back-no pain for me, and they did use the injections to numb it-worked within 2 mins and the needle was inserted, immediately, the tap was after that and it felt like a poke-like someone wanting your attention-not painful at all. it even made a pop when it went in, mainly because there was soo much scare tissue to go through, weird hearing a pop from my cord sheath like that. with a few of my lps they had to tilt the table to get the fluid into the tap-felt like one of those ocean type lava lamps-first the head went up then the feet went up, in a gentle rocking motion. and to help put mom’s mind at ease, at least with my procedures, i was monitored at all times, bp, oxy stats and talked to and comforted, the dr also told me what he was doing every step of the way. i actually fell asleep during a couple of them-only to be awakened by them telling me its done. the most important thing for the patient to do is stay relaxed during the whole procedure-it helps the dr and it helps the patient in recovery. don’t stress out about the lp, it isn’t worth the energy to stress over it. Big Hugs to your daughter, she’ll do Great.:)

I recently had a spinal tap. I was very scared! It turned out there was little pain, more of a pressure. I sat on the edge of the hospital bed leaning over the little tray that you put your dinner on. My husband was with me and held my hand through the whole process. It took about 1/2 to 3/4 of an hour. The headache that everyone is talking about is caused from the fluid being taken out of the spinal column. If you are very well hydrated the chances of getting the headache are less. My doctor told me to drink lots before going in and drink liquids that contain caffeine as it speeds up the process of the spinal fluid being replaced. He also told me to drink plenty afterwards with lots of caffeine so breakfast was a diet pepsi and a huge chocolate bar! No headache! 🙂

i had epidurals with 2 of my children and i have to say it was exactly the same … if anything it was easier than trying to curve my back whilst heavily pregnant! If you can curve your back (either sitting up leaning over or lying in the foetal position) it apparently opens up the space and makes it easier. i had a local anaesthetic and can honestly say it wasnt painful and not even all that uncomfortable. I was lucky and have not had any of the side effects such as headaches.

It took 7 days for my results to come back (they had to go to the nearest capital city) and by that time i had already been in an induced coma and had 5 days of ivig so they just confirmed what the docotrs already suspected / had already treated me for. Still, it was nice to have the diagnosis confirmed.

Your daughter has had kids … just remind her anyone who has been through childbirth can do anything!!!!

Geez Diane why do they keep giving you spinal taps, that seems pretty excessive to me. If the proteins are high and the findings conclusive, I don’t understand why they would put you through that.

My understanding is that if your protein level has come down that means that your GBS is coming under control through whatever treatments your getting.

My understanding is that if your GBS/CIDP is “active” (not in remission whether currently on treatment or not) is that the level “can” be elevated. It is supposed to be the most tell tale sign of the illness. That being said however, there are some of us who do not ever show elevated protein but have been conclusively diagnosed many other ways. For someone who is elevated, I would think if it is down it means that your disease is not progressing anymore and you are in or going into remission which is great news!!! This is just my understanding and thought processes based on my own experiences, research, drs. etc.

ow, ow, ow! That’s pretty much all I have to say about 5 lumbar punctures. 🙂

I think they are making the big bucks on you Iwas tols they cost 10.000 each MY dr said he wanted to give me another one and i told him didn,t learn from the frist i sure did ow!!!!