"traumatic LP tap"

[Sissy]

I had an LP done to check on my MS progress while on the Gilenya.

While under X-ray machine, I had to be stuck 3X's , because each time I had terrible "shock" all thru my rt. pelvic region,. buttocks rt. leg and foot. The radiologist had a hard time getting enough fluid. He could not get the needle in or fluid out. It took 3X's. With each stick it felt like what I could only imagine what a Tazer Gun had to feel like! It was so bad I thought I was going to throw up and faint! I became hot allover and clammy feeling.

While waiting in the recovery rm, the pain appeared to be getting somewhat worse so the Dr was called in to access the situation. He told me that the nerves in the areas were probably irritated but not damaged due to the fact that these needles were not the type that were sharp on the end and would not damage the nerves. They simply pushed the nerves aside.

I was instructed to lay flat for 24 hrs.and only get up for the bathroom. The pain seemed to get worse. On a scale of 1 to 10 ( 10 being the worst you ever felt!) it is at least a 10! If I lay perfectly still, I still had a throbbing, burning pain. If I moved in any way it is a very sharp stabbing pain (like that tazer gun would feel like!! Horrible!)!

When I go to the bathroom it is pure hell! Not to be gross but the tissue paper feels like it has huge grass burs in it! Just sitting here writing this is pure hell! I burn, sting, ache so bad I can barely sit here!!
I remember that the Dr did say that the tap was a traumatic tap and the fluid was not clear. It was pink! I wonder if it will mess up the test? I did call my Neuro and let him know. But I will not go back for another one!

I am still getting painful shocks/spasms when I put my foot down the wrong way . Or even reach over my head to get something out of the cabinet. My pubis and down through the rectum feel like I have boils or cuts and they burn! It's hard to get up or sit down. I tend to move very "Gingerly"!

[palmtree]

That sounds like a horrific experience! I had one LP and it was so painful I will never do it again. I don't understand why they don't use anesthesia for this procedure.

The kind of pain you are describing sounds way beyond the "little stick" that they say it will be. I hope you are on the phone with all your doctors to get help. Something may have been injured and, at the very least, they need to get you something for pain control. We don't like to be complainers but this sounds like a time to sound the alarm bells.

I wish you the best. It's no fun to go through something like that.

[Lindz28]

Hello, I am sorry to hear about your experience. I had a similar experience, not as bad as yours though. My whole right side hurt and then he moved the needle and then my whole left and right side hurt I was practically in tears, was trying to suck it up so I didn't look like a wuss. The Dr. who performed it was a jerk on top of it all. But the worst was when he pulled it out I had never felt so much terror in my life, there was a huge popping sound accompanied by a lot of pain. In that split second I thought I was going to be paralyzed or something by it. The whole process was very painful to a whole different level than I had ever been through before.

They said I would be fine after 24 hours, it took over a week to fully recover and because I do in-home care I had to call into work because I couldn't even transfer my clients. The Dr. told me that because I am a smaller person, I am 5 foot, that everything is more squished together so the needle probably was just rubbing up on nerves more than usual. Well whatever the reason I will never go through that again! It was very traumatizing for me as well.

I hope you feel better and that there is no damage, but it might be a good idea like palmtree suggested to get it checked just in case.

[Sissy]

I'm afraid to contact my Neuro because he is over 40 miles away and I don't trust myself to drive or even ride that far. I don't have anyone to drive me except my daughter and she would have to miss work ,again!
She took me for the test.

I told her that my "privates" hurt!! I have not had any feeling in that area since 1987 when I had cancer surgery! Now it feels like I have boils and
tiny cuts all the way thru my rectum. Today my back is really starting to hurt. I get a really sharp pain that threatened to take me to the floor.

I am going to call my GP in the am. I never thought to call him! He is very good and only 22 miles away. He is very good. As good pain meds well I have plenty, I took norco, soma,baclophen and neurontin. But it did very little to help!

[aitch10]

That sounds awful! I'm so sorry.

I've never heard of getting a second LP to check for progress. I had one a long time ago and really wouldn't want another one.

[TaoWarrior]

Ouch sorry. My LP was over a decade ago and I still remember it as the worst thing to ever happen to me.

The actual LP itself was not so terrible and certainly went much better than yours but the hole didn't close and all my spinal fluid drained out. All I could do was lay down. If I sat up my head felt like it would explode and the pain was so severe that I threw up. First and only time in my life I have had pain so bad it caused a physical reaction.

Then my neuro said that it would go away in a few days gave me some hydrocodone and wouldn't take my calls. Hydrocodone was like attacking an elephant with a fly swatter useless. Took a week and a half before she scheduled me for a blood patch. Then pain gone in 5 min.

Never been to the hospital that did the LP or the Neuro who made me wait a week and a half for an easy fix again.

Best of luck hope it resolves faster than my issues did! At least they are different issues

[Sissy]

Its been a week and I'm feeling a little better. But I will say NO from now on!! :-) My granddaughter had to have a blood patch also. I still have "sharp twangs" that stop me cold when I move to fast, turn to fast or reach to far!

Having MS is bad enough without adding this pain to your plate! I am never sure what is MS or something else anymore! :-/


But I really feel like this has messd up my sciatic nerve and that is why the spasams are so bad. My DH has had to put me on the heating pad almost every morning just to get me going! I'm sorry to be such a complainer but what else can you do? I no longer cry. I rarely ever shed a tear when i'm in pain. Waste of water! LOL....

[there]

The actual procedure is not supposed to hurt, but many neuros aren't doing a lot of them and are not very experienced at doing them.

The headache from the spinal fluid that may leak out is another matter. I had that too and was never offered a blood patch and also had to lie down for a week before it healed.

I would not want anesthesia which can cause added problems for some us just because a neuro is inexperienced. If I were to have one now I would ask a neuro how many of these he/she does a month (if less than 10 I would want to be referred to someone who does a lot).

[mm247]

Had mine last night twice

First time looked like a new resident was doing, but I was aware I was at a teaching hospital and who am I to say where he was at in his education? I hear it so difficult to perform as well. He finally brought in his attending and showed him how to do it. I wasn't happy to be poked so many times. It was handled so graciously on both ends, learner and teacher. What the first doc didn't have me do was arch my back, like a cat to fin the anatomy better. Very scary, now in my 24 hour flat position, learning so much from this board. first post! Hi ALL!

[Sissy]

Hi MM247! Welcome It will be 2 weeks tomorrow for me. I am just now getting through with out to much shock! I still have spasms in and under my rt. buttocks a lot. My privates are still having a little stinging sensation. But I don't care who is doing it MY ANSWER IS STILL NO!!

I do not blame the Dr. that did it he has 16 yrs practice..I do not think it was him ( but then again it I listen to MM247 I question his technique ) but a lot of it is my body. I tried to tell him that I have a lot of scar tissue down there in my lower back. But I'm not sure he listened to me at all. Two back surgeries and multiple Ligation's.

But also after reading several others here I question his technique! I'm over weight and short to boot.. so when he had me lay flat on my stomach, I commented I had never seen one done that way in Pediatrics, he stated it was ok since it was under Xray (not right word, but my mind is drawing a blank). I was flat on my stomach,with rt knee pulled up slightly.

[22cyclist]

Hi Sissy: Sorry you have had a traumatic tap, I have had a couple of those myself. I know exactly what you are talking about. The pink discoloration is just the blood from the vessel they nicked. It will not mess up the results at all.

Hope you keep feeling better!
Lisa

[Sissy]

Thanks you guys! for all your kind words! It sounds like a lot of you had bad time of it to! I'm sorry!

You know what I'm going to say, now is going to sound insane!! But I have been doing pretty well on the Gilenya with no new lesions. It took me 10 yrs to finally get off that Limbo train.Tons of SX and feeling so bad all the time and my GP telling me "it wasn't MS it was all in my head". I finally saw a MS Specialist in 09 and was finally given a name for this monster! It was MS!

I still have a lot of the same SX and have gotten worse. Until the Gilenya. Now it's mainly pseudo flares (?) especially with heat and fatigue. I still have a lot of problems and am getting slowly worse.

But! after reading here on the forum about others with MS for yrs being told that they don't have MS!?! That it will happen to me! I hate MS but it is nothing, compared to being on that limbo train and thinking you are going insane because you have all the SX and no name for it!!

I don't think I can bare that train again! I'm to tired and old now!

[palmtree]

I think they should stop doing that test. The MRIs are becoming much more refined and are better indicators of MS. At least that was my experience.

My LP came back "inconclusive". But there was no doubt when 2 months later I developed 3 new major lesions and and an uncountable number of smaller ones.

When I hear other peoples stories I wish I had refused it at the outset.

[Sissy]

PalmTree ( makes me want to go to Hawaii)Thank you for your kind and insightful comments. I know I'm supposed to go for injections for pain at my pain clinic in my lower back and my neck. I have had several done over the years and now I question if I can go through with them. My fatigue & strength are worse as time goes on.

Thank You 22cyclist for explaining abt the pink in the Tap.I figured as much but the tone in his voice made me worry. He commented I might have to come in at a different time and repeat it!!! My thought was like the kids say "OH NO HE DI'NT" !! By that time I was out of breath and trying to figure if I was going to faint or throw up on him!! I can stand a lot of pain,but I had reached my limit!!

I think he was so caught up in what he was doing that he forgot a human was on the table! He never talked to me or heard anything I said!!

Then this test put me flat on my back for almost 2 weeks! The heating pad has become my best friend. I have a sm. 7in Google Tablet that I use all the time but it has become hard to use because of the shocks going down my neck and back all the way to my rt foot. Plus holding it up!