Lumbar Puncture-reactions?

[Bedenbaugha]

Hi,

I am not diagnosed with ALS, although going through the rule/out/testing, etc. In fact, taking a break from it all because I'm tired of benig poked and prodded. I figure If I have a NMD, it'll still be around when I get back to it..

Anyway, My symptoms are: weakness in left arm, left hand, faciculations in left arm and side predominantly, frozen left shoulder, dorsal interosseous atrophy in left hand (between finger and thumb), no ulnar entrapment per EMG/NCV. Starting to notice weakness in Right hip (or high butt muscle.. which actually is mostly fat now that walking is more difficult ). I had an EMG a couple of months ago that was negative, so I'm hoping for everything being a side effect of my degenerative disc disease..

That being said, I had a HORRIBLE experience with a lumbar puncture several weeks ago and ended up in the hospital for 2.5 days. I ended up with a dural leaking cerebrospinal fluid from the puncture site, a herniated disc from the pressure change, and had to have 2 blood patches (basically, where they inject your own blood into your spine and hope it clots enough to seal off the leak). The headache with this was tremendous, nothing I ever wish on anyone!

My question is this though:- Has anyone else had this type of reaction to an LP? I have had an LP before without any problems (ruling out MS when I was 25-of course, I'm much older now )..and I wonder if folks with ALS/NMD have a different rate of LP related reactions/issues than say the "normal" population. From a theoretical perspective, considering midbrain involvement on MRI's in ALS patients, it might be reasonable to assume that a CSF pressure change would cause a 1) worsening of ALS symptoms or 2) a sensitivity to this type of procedure.

Anyway, if anyone has had a similar experience, please let me know?

 

[Annie's Phil]

I've known several people who've had the severe headache caused by the leaking of the CSF leaking from the puncture. They did not have als. My wife had a LP and suffered no ill effects. I don't see any reason that the change in CSF pressure should exacerbate als symptoms since they arise from motor neuron death. But I've never seen any data comparing the rates of CSF leakage and associated symptoms with als patients vs the general population.

 

[CindyRN]

I had a LP in November with no ill effects, not even a headache. After he was done he rub the puncture site for a couple of minutes than had me lie in the fetal position for 20 minutes.

 

[notme]

I spent 10 days in the hospital thanks to my last LP. Never, ever, ever, again will I allow one for any reason short of menengitis suspicion. No way no how.

I was in agony--couldn't lift my head for days--and vomited non-stop for ten days solid--not to mention the doctor hit a nerve that caused my leg to jerk for days.

Your theory isn't really substantiated--as it sounds like your problems were form a botched job--as were mine.

Motor neurons have little do to with CSF fluid, I don't imagine.

 

[Will]

My PALS is part of a ALS CSF bio-marker study, and had his first puncture a couple of weeks ago. The doctor had to do a second puncture because the first one did not yield any fluid. It hurt a bit as the lidocaine wore off, but he did not have any further reactions. I think he is going to continue to get these punctures every 4 months until the study is complete.

 

[paul71]

Before I had my LP, I did a little research. The NIH did a study on post LP headaches. There are several factors that can decrease the chance of post LP headache - size of the needle gauge, needle design (diamond shaped is better), direction of the bevel, among others. Before my LP, I asked what gauge needle they would be using. The first nurse I asked acted like it was a ridiculous question. I would not proceed until I was told the gauge and type of needle that was to be used.

The NIH study found that the incidence of headache is 70% if the needle is between 16 and 19G, 40% if between 20 and 22G, and only 12%if between 24 and 27G. The NIH stated that 22G is the smallest size that should be used for a diagnostic LP, and that is what I insisted upon. The study also found that the incidence of headache does not depend on the CSF opening pressure or the volume of CSF removed.

My neurologist also told me to ignore the hospital's advice to lay on my back after the procedure, and instead to lay on my stomach for the rest of the day in order to better allow the formation of a "clot", if that's the proper term.

I had an upper body EMG in the morning and an LP at 400pm, and managed to make it to work the next morning. In spite of all the bad medical stuff that I've gone through in the last 6 months, I was very lucky with my LP.

 

[fivestaralarm]

After exhausting every other type of investigation possible I am finally having a lumbar puncture on Thursday to check my CFS pressures and run some test on the CSF itself. My neurologist has avoided one so far as he is concerned about the possibility of post lumbar puncture headache which I am a prime candidate for.

 

[Tokahfang]

The only problem I had with my LP was my back being so spastic. The doc failed to get through the first two tries, and after the third try was succesful, he complained that my back was made of brick wall.

 

[nikolab]

After LP ......... I had a bad headache 7 days ........... :mrgreen:



Nikola

 

[Nighthawk]

Wow!
With all I've read about this procedure, I'd think twice before having it done on myself.

NH