swig
11-15-2007, 07:03 PM
I went to see a new neurologist today. He seems much better than the last. I have to have a spinal tap done, MRI of cervical spine and ep test. I am very very nervous about the spinal tap! Can anyone tell me what your experience was.
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kimpossible67
11-15-2007, 07:20 PM
I went to see a new neurologist today. He seems much better than the last. I have to have a spinal tap done, MRI of cervical spine and ep test. I am very very nervous about the spinal tap! Can anyone tell me what your experience was.
I'am not an advocate of spinal taps and I'm sure you'll get mixed reviews on this board. Mine went horribly afterwords and it took me two different trips to the ER to deal with the aftermath. Turns out, my spinal tap was negative but yet I was dx'd with MS anyway based on all the other tests. Ask and you will find many dx'd with a negative lp. My Aunt is a nurse and said to avoid spinal taps like the plague, too many things could go wrong. Take this advice as my experience, I'm not swaying you one way or the other, just letting you know my views. Good luck on your decision :)
I'am not an advocate of spinal taps and I'm sure you'll get mixed reviews on this board. Mine went horribly afterwords and it took me two different trips to the ER to deal with the aftermath. Turns out, my spinal tap was negative but yet I was dx'd with MS anyway based on all the other tests. Ask and you will find many dx'd with a negative lp. My Aunt is a nurse and said to avoid spinal taps like the plague, too many things could go wrong. Take this advice as my experience, I'm not swaying you one way or the other, just letting you know my views. Good luck on your decision :)
MSNik
11-15-2007, 08:33 PM
HI Swig, although I really do think that Kim is entitled to her opinion, she is one of the unfortunate ones who had a bad experience with her Spinal Tap (Lumbar Puncture). I have had two of them, have never had any problem at all.
Im not sure exactly what you wanted to know about it, but here is the gist of the procedure. (worrying about it takes a heck of alot more time and effort then the actual test itself!) When you have it done, youll have it done either in an outpatient setting, or even in a doctors office. You will be told to drink LOTS of caffeine the day before and morning of the test.. (Caffeine helps ward off the dreaded headache which some people get). You will lay on your side in the fetal position OR you will stand with your feet on the ground and your back to the ceiling, leaning over a cot or table...the doctor will inject you with a numbing agent by needle. This is like a big pinprick, nothing horrible, and over quickly. He will wait about 5 minutes for it to take effect and then insert a larger needle between your vertabrae which he will then withdraw fluid from your spinal column. This, you WONT feel at all. I have to be honest, my first time, I was TERRIFIED. My husband was with me and he was in the room holding my hand the entire time. It was over in less than 10 minutes! I felt so stupid for worrying about it...the second time, my mom went, she waited outside- but it was exactly the same and nothing bad happened.
NOW THE IMPORTANT part of the spinal tap is 2 fold. Make sure you absolutely go home and lay flat for 6-8 hours afterewards. Yes, you can get up to pee and walk from one room (the couch) to another (your bed). BUT STAY FLAT. Drink a ton of coffee, or coke and do what the doctor says. IF you also MAKE SURE THAT THE DOCTOR IS EXPERIENCED IN DOING THIS PROCEDURE (my neuro does about 15 of them a week) then youre in good hands. YOU DO NOT WANT A STUDENT DOING THIS- only because they take longer. You want it over fast!
Now, as for the question of is it really necessary? My doctor believes it is. His reasoning is that not only does it check for Obands in the spinal fluid (indicative of MS) but it also rules out LYME, Meningitis, and other brain infections which CANNOT be ruled out 100% in any other way. Lyme, can be ruled out, if the blood work is sent to a really good lab, but in general there are more false negatives then TRUE positives with LYme, so having it done thru a Spinal tap is more accurate...however, he really did feel that it was absoutely necessary to do the Spinal to rule out infection. I already had 50+ lesions on my brain MRI...we were already 99% sure it was MS. I elected to do this a second time when I was exposed to meningitis and wanted to be absoutely sure I hadnt contracted it. (i hadnt).
You will undoubtedly get several opinions on this and mine isnt any Righter than Kims or anyone elses, these are just our opinions and stories...whatever you do, please make sure you have an experienced doctor doing this. Come right out and ask how many he has performed and make sure he is comfortable doing yours...be absoultely sure of what the pre and post instructions are, and follow them to the letter.
Let us know how you do.
Nikki
Im not sure exactly what you wanted to know about it, but here is the gist of the procedure. (worrying about it takes a heck of alot more time and effort then the actual test itself!) When you have it done, youll have it done either in an outpatient setting, or even in a doctors office. You will be told to drink LOTS of caffeine the day before and morning of the test.. (Caffeine helps ward off the dreaded headache which some people get). You will lay on your side in the fetal position OR you will stand with your feet on the ground and your back to the ceiling, leaning over a cot or table...the doctor will inject you with a numbing agent by needle. This is like a big pinprick, nothing horrible, and over quickly. He will wait about 5 minutes for it to take effect and then insert a larger needle between your vertabrae which he will then withdraw fluid from your spinal column. This, you WONT feel at all. I have to be honest, my first time, I was TERRIFIED. My husband was with me and he was in the room holding my hand the entire time. It was over in less than 10 minutes! I felt so stupid for worrying about it...the second time, my mom went, she waited outside- but it was exactly the same and nothing bad happened.
NOW THE IMPORTANT part of the spinal tap is 2 fold. Make sure you absolutely go home and lay flat for 6-8 hours afterewards. Yes, you can get up to pee and walk from one room (the couch) to another (your bed). BUT STAY FLAT. Drink a ton of coffee, or coke and do what the doctor says. IF you also MAKE SURE THAT THE DOCTOR IS EXPERIENCED IN DOING THIS PROCEDURE (my neuro does about 15 of them a week) then youre in good hands. YOU DO NOT WANT A STUDENT DOING THIS- only because they take longer. You want it over fast!
Now, as for the question of is it really necessary? My doctor believes it is. His reasoning is that not only does it check for Obands in the spinal fluid (indicative of MS) but it also rules out LYME, Meningitis, and other brain infections which CANNOT be ruled out 100% in any other way. Lyme, can be ruled out, if the blood work is sent to a really good lab, but in general there are more false negatives then TRUE positives with LYme, so having it done thru a Spinal tap is more accurate...however, he really did feel that it was absoutely necessary to do the Spinal to rule out infection. I already had 50+ lesions on my brain MRI...we were already 99% sure it was MS. I elected to do this a second time when I was exposed to meningitis and wanted to be absoutely sure I hadnt contracted it. (i hadnt).
You will undoubtedly get several opinions on this and mine isnt any Righter than Kims or anyone elses, these are just our opinions and stories...whatever you do, please make sure you have an experienced doctor doing this. Come right out and ask how many he has performed and make sure he is comfortable doing yours...be absoultely sure of what the pre and post instructions are, and follow them to the letter.
Let us know how you do.
Nikki
cjordan6
11-15-2007, 09:23 PM
I was also terrified of having a spinal tap, when the dr said I needed to get one, my heart sank. Well it was not my favorite day of my life, but it was not nearly as bad as I thought it would be. The two shot of painkiller did hurt, but it was quick and then I felt nothing. I had heard to drink caffeine and gatorade, (when I asked the dr, he had never heard of this) Well after getting home from the procedure, I drank my diet coke and gatorade and laid on the couch for the rest of the day watching movies, I felt normal the rest of the day. I only got up to make something to eat and walk the dog. Later that night my back was slightly stiff in the area where the needle went in, but that was it. I never had a headache or anything, which surprised, since I tend to get frequent headaches. I hope this helps -- good luck
parisiancat
11-16-2007, 05:14 AM
Hi Swig,
Thinking about having it done, and imagining it is far worse than it actually is. I worked myself into such a state before mine that I walked into the doctor's room and burst into tears!
Mine took about 30 minutes. I didn't have an anesthetic. The needle going in was no worse than the dentist. Getting the right spot in my spine was a bit niggly, but that was uncomfortable rather than painful. Then it was left in for 20 minutes to allow the spinal fluid drip out. i didn't feel a thing for all this time and didn't even feel the needle being pulled out.
Is it important? For me it was what gave me my dx. My MRI showed only 4 lesions and even though my neuro suspected MS from the very begining, without the positive LP I don't think I would have been officially diagnosed.
Nikki's advice is very good - finding an experienced doctor etc.
Good luck.
Cat x
Thinking about having it done, and imagining it is far worse than it actually is. I worked myself into such a state before mine that I walked into the doctor's room and burst into tears!
Mine took about 30 minutes. I didn't have an anesthetic. The needle going in was no worse than the dentist. Getting the right spot in my spine was a bit niggly, but that was uncomfortable rather than painful. Then it was left in for 20 minutes to allow the spinal fluid drip out. i didn't feel a thing for all this time and didn't even feel the needle being pulled out.
Is it important? For me it was what gave me my dx. My MRI showed only 4 lesions and even though my neuro suspected MS from the very begining, without the positive LP I don't think I would have been officially diagnosed.
Nikki's advice is very good - finding an experienced doctor etc.
Good luck.
Cat x
Snoopy61
11-16-2007, 09:28 AM
Hi Swig:
My experience with a LP was not good but I had it done in the dark ages ;) and I had a Myelogram done directly following the LP. I have no regrets about the LP, it helped with my diagnosis.....I'm not sure I would have been dx'd at that time if not for the LP.
The LP, for many is no big deal with minimal problems.....much better than when I had one. However, a diagnosis of MS can be made without the LP but the LP will give the neuro more information.
My experience with a LP was not good but I had it done in the dark ages ;) and I had a Myelogram done directly following the LP. I have no regrets about the LP, it helped with my diagnosis.....I'm not sure I would have been dx'd at that time if not for the LP.
The LP, for many is no big deal with minimal problems.....much better than when I had one. However, a diagnosis of MS can be made without the LP but the LP will give the neuro more information.
swig
11-16-2007, 10:18 AM
Can I take Xanax before I go?
tuckersmom
11-16-2007, 10:21 AM
Some have done that or taken some form of a sedative. I would call your dr. first and ask if he/she would be ok with that.
Good Luck. Mine went flawless...the laying down after seems to be a major help.
Lisa;)
Good Luck. Mine went flawless...the laying down after seems to be a major help.
Lisa;)
mitch512u
11-16-2007, 10:40 AM
My spinal tap was done in the emergency room at the hospital where I was eventually dx'd with MS. I had no problems with it at all.
Mitch
Mitch
swig
11-16-2007, 02:35 PM
Thank you all so much for your feedback. My doctor is not the one doing the spinal tap, I believe he said an anesthesiologist will be doing it. Did your doctors do it or an anesthesilogist?
cjordan6
11-16-2007, 03:03 PM
Mine was done at the hospital under fluoroscopy with a radiologist. Once again, it was all in my mind how terrible it was going to be, and in the end it turned out not to be painful or a big deal at all.
AllyG
11-23-2007, 12:55 PM
I had a spinal tap under local anastethic & had no problems during the procedure. Had a fairly wicked headache the next day but I think I got up too quickly afterwards.
TXChica70
11-25-2007, 11:45 PM
Let me tell you that I think most people have a pretty uneventful LP. I can't say I did but I think it was because I had mine done in The Netherlands where they don't use pain relief for this type of procedure. Just the large needle straight into the back. That was the longest couple of minutes of my life. My doctor also did not tell me to drink caffeine so I did get the headache and that was worse than the LP. I had to go back in for the blood patch which was the exact same procedure, they just put blood back in instead of take fluid out.
So, the gist of my story - you'll have pain relief with yours so if I can handle this procedure without, you can certainly handle it with it. It is worth it in the end. Yes, many do get dx'd with a negative LP but it was the positive LP result that finally lead to my dx so it was worth it for me.
If you do get the headache, don't wait to go back in. If it's after hours go to the ER - they'll call the oncall neuro in and you can get the patch done right then. It's immediate relief.
So, the gist of my story - you'll have pain relief with yours so if I can handle this procedure without, you can certainly handle it with it. It is worth it in the end. Yes, many do get dx'd with a negative LP but it was the positive LP result that finally lead to my dx so it was worth it for me.
If you do get the headache, don't wait to go back in. If it's after hours go to the ER - they'll call the oncall neuro in and you can get the patch done right then. It's immediate relief.
kimpossible67
11-26-2007, 08:14 AM
So, the gist of my story - you'll have pain relief with yours so if I can handle this procedure without, you can certainly handle it with it. It is worth it in the end. Yes, many do get dx'd with a negative LP but it was the positive LP result that finally lead to my dx so it was worth it for me.
Well, I don't know about that. Mine was done with a painkiller and still my outcome wasn't what I'd say is optimal. I did what I was supposed to (caffiene, staying flat) and still it was just awful. It must just be a crap shoot for some people. I just have hard feelings because when my LP came back negative and my neuro dx'd me without it, I felt it was so unneccessary for me and my family to go through it in the first place, kwim?
If you do get the headache, don't wait to go back in. If it's after hours go to the ER - they'll call the oncall neuro in and you can get the patch done right then. It's immediate relief.[/QUOTE]
I agree, don't suffer. However, it took me 2 trips before my blood patch took but once it did, it was immediate.
The whole experience was awful but it looks like the "bad" outcomes are much less than the "good" ones and that IS good!
Well, I don't know about that. Mine was done with a painkiller and still my outcome wasn't what I'd say is optimal. I did what I was supposed to (caffiene, staying flat) and still it was just awful. It must just be a crap shoot for some people. I just have hard feelings because when my LP came back negative and my neuro dx'd me without it, I felt it was so unneccessary for me and my family to go through it in the first place, kwim?
If you do get the headache, don't wait to go back in. If it's after hours go to the ER - they'll call the oncall neuro in and you can get the patch done right then. It's immediate relief.[/QUOTE]
I agree, don't suffer. However, it took me 2 trips before my blood patch took but once it did, it was immediate.
The whole experience was awful but it looks like the "bad" outcomes are much less than the "good" ones and that IS good!
scutiesnowflake
11-28-2007, 03:33 PM
thanks for all your info on the tap-- I passed on it a few weeks back . my choices were 1hiv test of 2 spinal tap. I took the hiv test - negitive. I'm having the tap on dec. 5th , yes i'm neveous, but your info makes me feel better. I hadn't heared of the caffine- definly will do
scutiesnowflake
11-28-2007, 03:34 PM
[QUOTE=scutiesnowflake;3326513]thanks for all your info on the tap-- I passed on it a few weeks back . my choices were 1hiv test of 2 spinal tap. I took the hiv test - negitive. I'm having the tap on dec. 5th , yes i'm neveous, but your info makes me feel better. I hadn't heared of the caffine- definly will do