LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Gathering Information: Spinal Tap Poll

 - UBBFriend: Email this page to someone!    
Author Topic: Gathering Information: Spinal Tap Poll
nancyf723
Member
Member # 7505

Icon 1 posted      Profile for nancyf723     Send New Private Message       Edit/Delete Post   Reply With Quote 
My LLMD neuro wants me to have a spinal tap to rule out MS. My LLMD doesn't think I need it, but said go ahead if it will help with ruling out MS.

Here are my questions:
Was the procedure itself uneventful?

Did you get the spinal headache?

Are you female or male?
(it seems women have spinal headaches more often than men)

Were the results helpful?
Thanks in advance for anyone who can help.
This sight is a lifesaver.

Posts: 69 | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
My opinion for ME: I would never have one unless my life depended upon it.

spinal tap nightmare
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=047324

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94693 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lucy96734
LymeNet Contributor
Member # 8372

Icon 1 posted      Profile for lucy96734     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had one because I needed my neuro onboard to get my medications covered. She wanted to rule out MS and a number of other things.

I had it and it did rule everything out and I am able to give the scripts from my LLMD to her and she gets my insurance to cover them [Smile]

It was not a lot of fun but wasn't painful. I stayed laying down for hours after and did not get a headache or have any lingering effects.

--------------------
Lucy

Posts: 342 | From Hawaii | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
buckfever
Member
Member # 9876

Icon 1 posted      Profile for buckfever     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes , I have had 2 spinal taps and niether one was able to rule in or out MS or lyme. I got a nasty headache from the first one,partly my fault as I didn't go home and lay down as suggested . Second time They did a blood patch(inject blood into tap site) and headache was very minimul . Don't think I'll let them talk me into another one unless the tests prove tobe much more accurate !!! IMHO.
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Ganjagal
Member
Member # 11095

Icon 1 posted      Profile for Ganjagal     Send New Private Message       Edit/Delete Post   Reply With Quote 
It hurt when he did it, nothing unbearable, but still.

I had a headache and was sick for a week

female

If I had to do another, I would ask for fluids in the IV that they start.

Posts: 33 | From North Central PA | Registered: Jan 2007  |  IP: Logged | Report this post to a Moderator
hurtingramma
LymeNet Contributor
Member # 7770

Icon 1 posted      Profile for hurtingramma     Send New Private Message       Edit/Delete Post   Reply With Quote 
I also had a spinal tap to rule out MS - before I had even heard of Lyme Disease.

I also got the headache and had to go back and get the blood patch.

All in all, not a pleasant experience, that I consider was a waste of time and money.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

Posts: 938 | From Northeast Kingdom Vermont | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
klutzo
Frequent Contributor (1K+ posts)
Member # 5701

Icon 1 posted      Profile for klutzo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had two spinal taps to rule out MS, 2 years apart. I did not get a headache, because mine were done so long ago that I was kept in the hospital overnight and laid down the whole time. Neither test hurt at all. I am female.

Klutzo

Posts: 1267 | From Clearwater, Florida, USA | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
Bill ATL
Member
Member # 7817

Icon 1 posted      Profile for Bill ATL     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nancy...

I was in a "rule everything out" mode when I had mine done. And since I had neuro issues and headaches, did the LP. The procedure itself went well. Wasn't a lot of pain, but I'd characterized is as more of a "pressure" type of feeling in my head. This can also depend on the experience and skill of your Neuro Doc.

It did not show Lyme, but it also did not show any of the traditional Neuro issues that they test for...including MS, and THAT knowledge, for me, made it worth it...again...eliminating all other possibilities.

I did not have the headache...I made SURE I didn't do much of anything for 3 days. If you do it, I recommend you do it on a Friday...if you have the weekends off.

It's a scary procedure to think about, but I'm glad I did it.

--------------------
Bill

**Question everything...it may save your life!!!**

Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
a spinal tap alone will not rule out (or in) ms.

make sure you have all your ducks(sorry) in a row if you do this to yourself

it was pretty much the worst procedure i ever had..it was POSITIVE..and the ins co still figured out a way to not give me iv abx

took me weeks to recover

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13710 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Katcon
LymeNet Contributor
Member # 9812

Icon 1 posted      Profile for Katcon     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had one done five years. I am female.

I would never do it again. I was recently hospitalized again in August, and the first thing I told them is that I would never do it again.

I personally think it is a waste. You don't feel good anyway, and then someone wants to stick a needle in your back. The tested showed absolutely nothing.

I sure someone hear can tell you the percentage of LP actually show Lyme.

I'd rather stick a needle in my eye, than do that again.

Posts: 175 | From Pa | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Katcon:
I personally think it is a waste. You don't feel good anyway, and then someone wants to stick a needle in your back. The tested showed absolutely nothing.

I sure someone hear can tell you the percentage of LP actually show Lyme.

I believe it's 20-30% accurate for finding Lyme. Not sure how effective at finding MS, but since there's no iron-clad test for MS, I'm sure it isn't any better.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94693 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
trueblue
Frequent Contributor (1K+ posts)
Member # 7348

Icon 1 posted      Profile for trueblue     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had an LP done as part of a rule out diagnosis in 1993. I didn't know any better. I wouldn't do that ever again and suggest if you can not have one don't!

It was painful despite the local they gave me and the Demerol.

Spinal fluid leaked and I got that headache, the one that makes migraines seem like a party.

I was given 2 doses of steriods 2 days apart along with my Rocephin to stop it. The next step would have been a blood patch.

The internal headache kept me in the hospital for 10 days feeling like my scull would blow apart. There's nothing in the world that touches it.


Now, all that said some people don't have bad experiences but, for me, I wouldn't take that chance ever again.


I am female and the results showed no protiens (or whatever) they were looking for for MS. Neither did they catch a spirochete.

--------------------
more light, more love
more truth and more innovation

Posts: 3783 | From somewhere other than here | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
iceskater
LymeNet Contributor
Member # 8655

Icon 1 posted      Profile for iceskater     Send New Private Message       Edit/Delete Post   Reply With Quote 
Female. Had back spasms. Ruled out ms but did not show anything else. I would only have one done is my life depended on it only. Was very uncomfortable after the procedure.
Posts: 719 | From Delaware | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
WildCondor
Unregistered


Icon 6 posted            Edit/Delete Post   Reply With Quote 
Female, hurt like hell, passed out, got a spinal headache, and it proved nothing and was totally useless. It misses Lyme in most cases.
The MRI of the brain showed lesions and neurologists said I had MS, which was total BS!
if your LLMD wants you to have a spinal tap, do it, if a duck wants you to, run!

IP: Logged | Report this post to a Moderator
5dana8
Frequent Contributor (1K+ posts)
Member # 7935

Icon 1 posted      Profile for 5dana8   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
yep, very painful & missed my lyme at my sickest.

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I bet nancy can't wait to do this now! [Roll Eyes]

Nancy....you got the truth. What to do with it is your decision. I hope we helped you decide.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94693 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979

Icon 1 posted      Profile for Boomerang     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby had a spinal......didn't have any problems with it. He had to remain at the hospital for three hours after it.....flat on his back in a dark room.

Spinal didn't really provide any input for us though.

Posts: 1366 | From Southeast | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
tory2457
LymeNet Contributor
Member # 10384

Icon 1 posted      Profile for tory2457     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Nancy,

Diagnosed with MS WITHOUT a spinal!. My 2 neuros at the time sent me for MRI's instead...this after 3 years of my 1st symptoms. They didn't feel a spinal was necessary in order to diagnosis me.

MS like Lyme is a clinical diagnosis!

I was always thrilled I never had to go through a LP. I can't remember exactly, but I believe if you don't get a spinal within days of 1st symptoms it's really a useless test! Could that be why they excluded me for a LP; 3 yrs later? Remember, prior to CRABS, it took a long time (yrs) before neuros diagnosed MS! Back then, no doc was too quick to say MS...they waited for more "symptoms", and then lesions!

Hope you find your way:
funny isn't it? I have a MS diagnosis(since 1990)and am now being treated for Lyme. hmmmmm

Posts: 158 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320

Icon 1 posted      Profile for beachcomber     Send New Private Message       Edit/Delete Post   Reply With Quote 
Didn't hurt too much, until the needle hit the nerve that goes to the bladder. I got a sharp pain in my abdomen and my bladder completely shut down. I spent the night in the hospital having my bladder drained by a nurse until it could function again. The associated back pain was horrible.

Won't do an LP again any time soon.

Posts: 1452 | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Cobweb
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
I personally refused an LP when it was suggested-by a duck. I already had a positive blood test for Lyme, and he treated me for three weeks, so when i still showed symptoms of lyme (after the three week course) he ordered an LP. No way Hosay. Without the LP though he would not continue Lyme treatment.

I did have an MRI,which was "normal" although it stated the results were compromised by "artifact motion" I was freezing during the test and shivering the whole time.

I finally made it to an LLMD who did not feel an LP was warranted (whew).Neither did my neurologist, although he was not a LLMD neurologist.
Carol

IP: Logged | Report this post to a Moderator
nancyf723
Member
Member # 7505

Icon 1 posted      Profile for nancyf723     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, LymeToo the poll was a success.
I'm not getting the spinal tap.
I called the neuro Monday to ask a few more questions about the procedure. He admitted about 50% of patients get the headache. I told him I was very busy at work and couldn't afford to loss "a few days", he said to do it in June when I'm on vacation.
HOW CRITICAL CAN THE RESULTS BE IF I CAN WAIT TILL JUNE!!!
Yeah right, June of two thousand and never.
If all symptoms were pointing to MS then maybe.
Thanks again to everyone, the information gathered at this sight is invaluable.

Posts: 69 | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

Icon 1 posted      Profile for Michelle M   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Female, had the spinal before lyme diagnosis, to satisfy neuro, due to multiple brain lesions on MRI.

Got a violent headache despite doing exactly as prescribed (lying down, drinking tons of Coke, etc.)

Findings were elevated proteins and opening pressure.. lyme test negative.

Remember, even finding oligoclonal banding does not automatically mean MS as that can be found in lyme also. It simply adds to a diagnostic picture.

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
savebabe
Frequent Contributor (1K+ posts)
Member # 9847

Icon 1 posted      Profile for savebabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had two spinal taps in the past four years and they are not fun.

I did get a headache after the procedure, but If you lie flat you will be ok.

I was 26 and 28 when I had these tests run.

Did they find anything? NO

It did rule out MS, but did not pick up the lyme disease in the fluid.

I really hated doing the test, but I did find some comfort in knowing that I did not have MS.

The docs originally gave me a MS diagnoses, so the results made them very confused.

Good luck.

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
DeniseNM
LymeNet Contributor
Member # 11182

Icon 1 posted      Profile for DeniseNM     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was told 9 years ago that I have MS, and that a LP wasn't 100% useful - it only works part of the time to pick up MS. So I've never had one. Didn't seem worth the pain and the risk. Now I'm going through the lyme stuff and am positive on CD57, so I probably never had MS. Am still sorting out what to do about the MS drugs...

--------------------
dx: MS in 1998
2007 - Lyme suspected
2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS
gall bladder out 7/09
Ceftin, Zith, Septra
LDN
Acyclovir
Monolaurin, DHEA, Pregnonelon, Curcumin

Posts: 243 | From New Mexico | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.