Some things are not showing in my blood after
I used to test + for them a couple of years
ago, but I have been off treatment for 2
years.

Did your llmd or neurologist do it? Anything
I should know about? What kind of anaesthesia (sp) was used at needle entry?

[This message has been edited by ArtistDi (edited 13 February 2005).]
 

Veteran of 7 spinal taps here including two a few months ago.

Anesthesia-wise, they just inject lidocaine into the area. But to really reduce the discomfort, ask for a pediatric-sized needle! It will take longer for them to collect the fluid (slower flow through narrower needle) BUT (A) it is less uncomfortable going in, (B) the hole (in your epidural space) is smaller, less fluid leaks, less chance of "spinal tap headache", and (C) your back feels better (not sore) in a day or two instead of several days. Just lay low the day you have it and the next and that speeds the healing along.

As for the whom part, who hasn't done it on me? But of all of them, the two that went the best were both neurologists (different ones!). If you need a local guy, my neurologist from Holyoke did it on me at Cooley Dick (he was terrific!). Also, oftentimes anesthesiologists do it (they do a thousand a day giving epidurals to women). If you go that route, AVOID LIKE THE PLAGUE Dr. Lee at CDH. She is horrid. My LLMD did it once and, sad to say, provided one of the lesser experiences.

You'll likely be baraged here by folks saying "don't do it!" But if you have other stuff going on neurowise and tests are needed to rule out other things or figure out how to treat you, then doing the above will help you along.

If you need any more tips or just want to talk the whole thing over "with a veteran," feel free to email (you still have my email address, right?).

All the best,
~Dura Mater

[This message has been edited by duramater (edited 13 February 2005).]
 

The procedure was done by a radiologist. He uses fluoroscopy. The tap doesn't take very long. Jordan had 26 cc of fluid drained was it took a little longer.

He had to stay there are 1 hour on his back. He did develop the spinal headache on Sunday. It took until Thursday to feel better.

The nurse said very few people develop a spinal headache. People with headaches are more likely to.

Jordan had a spinal tap in 2001 and the same doctor did both procedures.

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Would have it done at Cooley Dic and I see
a neuro named Dr. O'Connell in 'Hamp. Ever
have him do it?

I don't want just anyone.

Cave--Good idea. LLMD wants the fluid sent
to Igenex and MDL for pcr, I believe. Thinks something is really pushing the seizures and blood isn't showing whole picture.

Di

[This message has been edited by ArtistDi (edited 13 February 2005).]
 

The first one, I was 13 and my pediatric neurologist did it. It was HORRIBLE. I was so nervous they had to give me a sedative (may have been why it was horrible - I was tense). It hurt really bad, and the doctor had some problems resulting in him hitting some muscles which hurt as well. I spent the next week flat on my back and missed school. The headache was horrible. The tap showed him that my CSF protein was 107, which is high (supposed to be under 40) and shows that there is inflammation in the body.

My 2nd one happened this past spring when I was 21. It was much better. I had it done at Mayo, by a lady who does them all day. She played soft music so I would relax before and during the tap. This is very important I think - you need to relax. It hurt much less, and I had a slight headache the next day, and that was it. They gave me a hint there - the day after, if you can tolerate caffeine, drink lots. After every cup of a caffeinated beverage, I was told to drink a cup of water. So I was switching between Mt. Dew and water, and I barely had a headache.

Oh, and the results from that test was that my opening pressure was high (over 200) and my CSF protein was still rather high (69).

So have the doctors check the pressure and protein as well. This may show inflammation in the body, which may be further aggravating your nerves.

Good luck!
 

I had an epidural during labor, so I kind of
get the general picture of the needle work.

Would a spinal show menigitis?
 

In hindsight, I'd probably insist that it be done by an interventional radiologist or Anesthesiologist under fluoroscopy for safety and accuracy.
 

Good luck - let us know how it goes.
 

I found this information online when I was searching for the cause of the spinal headache:

The average sized adult human has roughly 150ml (a little less than 8 oz or 1 cup) of a clear watery fluid, called cerebrospinal fluid (CSF) in the central nervous system, surrounding the spinal cord and brain. One of the functions of the CSF is to provide a protective layer, essentially to act as a cushion to shield the brain from the hard bony skull and to provide a soft environment for the blood vessels to supply and drain blood from the brain. There is a thin membrane surrounding the brain and spinal cord called the "dura". When there is loss of CSF for whatever reason, usually as a result of a hole in the dura, the brain tends to sag, due to loss of this protective fluid cushion. This brain sagging causes stretching in the connective tissues in the cranium, this stretching is sensed as pain, and hence the headache. Also, the loss of some CSF causes blood vessels in the brain to dilate, which can also be perceived as a painful sensation. The technical term for this kind of headache, known commonly as "spinal headache", is post-dural puncture headache, or PDPH.

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I think it's pretty much purely mental, like most medical procedures of the sort. It only takes a minute, and if you don't freak out about the needle, you'll likely be fine.
 

All was well until the needle hit the nerve that goes to my bladder and put an abrupt halt to the ability to urinate. So, I ended up in the hospital anyway with a catheter up me to drain my bladder. The office staff was not equipped to handle this kind of mishap. I was not a happy camper.

LPs scare me a little. Plus, the PCR came back negative, even though my blood levels were highly positive. Guess the timing has to be right with the LP. I have/had tremors, shaking head, slurred speech, lots of neuro symptoms - still the PCR was negative. Am being treated for neuro symptoms anyway by my Lyme MD.

My advice is to check the credentials of the person doing the procedure. Don't be afraid to ask how many he/she has done.

Bc
 

I had mine done by a neurologist. She used a small needle and VERY SLOWLY withdrew the fluid. I had minimal pain during and after the procedure (with no sedative) and didn't get a headache.

Good Luck!!
 

I didn't care to know the gory details like the size of the needle or what exactly he was doing when, because I'm a huge weenie. It did not show lyme, but it did show bartonella and ruled out other health issues.
cootiegirl
 

We discussed my seizure activity, but he said
if I had one, he would help me out of it. He
would also withdraw needle.

Soo....here goes. Will determine the day
and time. Oh yes, women--does the timing of
menstrual cycle impact the tap? Will ask
that today.
 

if you have the LP done make sure they do a complete work up on you. like screening for MS.

i don't know all the tests that should be ordered - maybe someone else could tell you that, but the one thing that came back positive for me was:

Oligoclonal Immunoglobulins.

this positive result has helped me get DRs to tkae my condition seriously.

also Lymphocytes, IgG index possibly. i don't really know all the tests they could order. someone else might be able to help there.

check out this as a general referrence.
http://www.nlm.nih.gov/medlineplus/ency/article/000737.htm

i'm not saying i think you have MS, but if you can find any signs of inflammation in your CFS it might help in getting treratment.

thanks
bill

PS - you also don't want to do too many tests because the less CSF they take out the better.
 

You asked if a tap can show meningitis. I don't know if anyone answered that, but YES it can.

THe other thing is , if you get a headache, has anyone told you about a blood patch?

There is absolutely no reason to suffer a spinal headache, at all. ( And they are BAD) I had one.

My sister, mother and my other sister all had LP done. every single one of them got a spinal headache. I got one with a spinal given to me for labor.

If you get the headache, they draw some blood out of your wrist and shoot it into your back ( blood patch) to close the opening.

Viola- the headache is GONE.

Don't worry about the headache part of it, but let them know at the slightest hint of a headache, you will be askign for a blood patch!

I was recently just to have a spinal tap done. However, I skipped it. The neuro was to draw four tubes I think, out of my spine, let me lay for 40 minutes,

send me to the hospital with my own spinal fluid to have blood drawn out of my arm, and then send me home.

There is absolutely, positively, no way that I would have NOT gotten a spinal headache getting up 40 minutes after a tap , and walking across the street to the lab to get my blood drawn!

So I skipped it. Plus, he was a neuro that knew SO MUCH about lymeS.

I am so tired of running around, but it is
hard when llmd is out of state and I need
to make arrangements at home.