This is what a lumbar puncture may reveal:

http://peripheralneuropathycenter.uc...ar/index.shtml

Hi Susanne,

It is an invasive procedure, and all invasive procedures carry some inherent risks. (Google: lumbar puncture risks) The biggie (from my experience participating in chronic pain support groups) is (Google: arachnoiditis), but there are others as well. In articles about lumbar puncture, the risk (if mentioned at all) is stated as extremely rare, however in articles about causes of arachnoiditis, lumbar puncture is included right up there with spinal surgery/trauma (because it is a trauma. There is a risk any time the arachnoid mater is disturbed). Of the people I've met with arachnoiditis, about 1/3 got it from multiple surgeries, 1/3 from this procedure, and 1/3 from other causes.

My personal feeling/view is that a spinal tap is one of those tests (like a CAT scan) that I would only submit to if absolutely necessary and there were no other way of determining whatever they're looking for. They wanted to do one on me when I went into the ER for a level 10 headache (the only time I've ever rated pain that high) "IF I wanted one" because they were concerned about meningitis. However I did not present like meningitis (and knew it) so I was able to put them off for an hour while they tried an IM injection, and since the pain began to subside (to a 9) from that, they were able to rule out meningitis and backed off on the spinal tap. It took several more hours to bring the pain level down to where they would release me.

Whenever a doctor mentions a test/procedure followed by, "IF you wanted one" it kind of sets alarm bells off in my head that they're hinting that there could be something they're not telling me -- probably not to elicit undue fear -- but something they're not mentioning anyway. Any time I've pursued it, they've gotten that "uncomfortable" look before evading the question.

I think everyone with chronic spine pain and/or spine issues should read up and be aware of all the various tests & associated risks we may be looking forward to. Some sites (and doctors) do not mention all of the risks (just as they don't with some medications). It's not always easy, but necessary to make truly informed decisions concerning our care & health.

Doc

I have a cousin who has acrachnoiditis after having back surgery quite a few years ago. It is not a pretty picture as she has suffered severely ever since.

http://www.webmd.com/pain-management...-arachnoiditis

Another person married to another cousin had that dye thing done. He died. I would be very wary of any of it.

And the lumber puncture seems to be to find out if a person has an autoimmune disease, etc.

After reading the description of Arachnoiditis......read like I was reading about myself.

All symptoms..... except do not have the uncontrollable twitching.

Causes......had dye used in Myelogram,
epidural steroid injections, nerve compression.
Spinal stenosis still bad; but lamina removed from worst area to allow spinal cord more space.
Many spinal procedures,
Also had lumbar spinal fusion as well.

Yikes....Have to wonder. Never been diagnosed with Arachnoiditis, but am under Pain Management with pain meds, including Oxycontin, Oxydodone, Vallium daily, and in order to sleep or even lay down without terrible pain, use Ambien CR every evening.


Gerry

but dont u think it is a necessary diagnostic step?

Not unless there is something to be gained that justifies the risk and there is no safer way of determining it.

There will always be the argument of whether doctors do too much testing or not enough. MrsD answered the question of why to do it (i.e. what it might reveal). I answered the question why not to do it. I'm not trying to tell anyone not to do it; I'm just pointing out a risk that I believe is downplayed/overlooked. The decision is between doctor and patient, but I believe that decision should be an informed one. The days of patient acquiescence are over.

Doc

I was diagnosed with idiopathic PN a year ago. I've seen 2 neurologists, an ER doctor, a rheumatologist, my PCP (several times) and not one of them has suggested a spinal tap.

I suppose that my symptoms may be different, but I just thought I would chime in. I'm actually relieved that none of the doctors have suggested I have one.

I wouldn't do it, unless there was no other way to determine your condition. I did turn down two invasive tests. Lost a doctor over it too. I didn't like the risk, as I was already hurting. Didn't do EMG, and a myleogram, and no CT scan with dye either. I had one before and had a reaction to the dye used. I know alot of others may say go ahead and do the diagnosis, but for myself, I turn down pain at all costs. I survived and had surgery without those tests. No matter what you decide, look up all risks and benefits. I wish you all the best. ginnie

thank you guys for the thoughts my neuro just recommended me to a neuromuscular specialist to look further into genetic disorders/CMT possibilities because on my family history. I should get my new MRI results tomorrow and have a VEP tomorrow both which i suspect will be normal...thanks again! (also i still notice that heat tends to bring on tingles in my legs? it was 98 degrees today and i noticed it several times)

Well, if they suspect CMT, there is really no need for a spinal tap! I hv the tingles in my legs regardless of the weather, but the pain is much worse if I am cold.