Lumbar puncture

[nebrhahe53]

I found out today that the Houston ALS clinic is planning to do a lumbar puncture on me. As we already know I have ALS I'm wondering if this is a safe procedure for me or can it speed up progression?

 

[nebrhahe53]

Nikki can you move this to the general discussion section please?

 

[bigmark1954]

Good to see you posting nebrhahe!
I would be curious about the LP after diagnosis. Usually they do them before diagnosis, looking at the proteins and checking for blood platelets in the spinal fluid. Perhaps they suspect something else is going on with you....I would want to know specifically what the reason for the test is?
As far as recovery goes....you should be back to normal within 24 hours. They will tell you to stay horizontal for a day or two. The procedure is a pain in the arsse.....but much better than it was back in the day.

 

[dalvin]

Mine was very painful as the doc doing it hit a nerve causing my entire left leg to severely cramp the whole time. Swore then and there that they would never do another

 

[MaxEidswick]

>I found out today that the Houston ALS clinic is planning to do a lumbar puncture on me.

Neil, is this the 3-day eval? They do one as a matter of course plus for Dave Beers marker research (search beers foxp3). mine was ok except it took 3 tries to get in :-(

 

[GregK]

> They will tell you to stay horizontal for a day or two

and if you fail to lay flat for that 24 hours (quick bathroom breaks OK) you could well develop a bad migraine (or worse). I speak from experience.

 

[DreamsEnd]

Hummm, don't know about this as part of the diagnosis but my PALS had one last Friday night because of a bad migraine and they were ruling out possibility of bleed in the brain. He never felt it as they used lidocaine on skin and a little deeper. If it's done correctly should be no problem. We queried the doc about how many he'd done in advance as no practicing on him. No ill effects or headache afterwards.

Sherry

 

[MaxEidswick]

>We queried the doc about how many he'd done in advance as no practicing on him

good thinking if you can trust their answers. I had a neuro at the CHE VA who looks about 13 yo ...

 

[Atsugi]

Neil, you can always refuse the LP.

 

[lgelb]

Since we don't know the mechanism(s) by which neurons die, and loss of function is often nonlinear, it would be pointless to suggest that we know everything that will or won't affect progression. And that answer is likely different person to person.

As with any invasive medical procedure, my question to the clinic before signing a consent form would be "Why do I need this? In what way could it affect my treatment outcomes?"

LPs are being done for research in ALS toward potential CSF markers of dz/progression but the decision to incur a non-zero risk of adverse events [including unknown effects on your ALS progression] in order to help the future is a personal choice. Of course, there may be some other reason in your case though you don't seem to fit any of the traditional indications for an LP, so I would want to know explicitly what it is.

From Mayo Clinic:

Though lumbar puncture is generally recognized as safe, it does carry some risks. These include:

Post-lumbar puncture headache. About 40 percent of people who have undergone a lumbar puncture develop a headache afterward due to a leak of fluid into nearby tissues. The headache typically starts several hours up to two days after the procedure and may be accompanied by nausea, vomiting and dizziness. Post-lumbar puncture headaches can last from a few hours to a week or more.
Back discomfort or pain. You may feel pain or tenderness in your lower back after the procedure. The pain might radiate down the back of your legs.
Bleeding. Bleeding may occur near the puncture site or, rarely, into the epidural space.
Brainstem herniation. Increased pressure within the skull (intracranial), due to a brain tumor or other space-occupying lesion, can lead to compression of the brainstem after a sample of cerebrospinal fluid is removed. A computerized tomography (CT) scan or MRI prior to a lumbar puncture can be obtained to determine if there is evidence of increased intracranial pressure. This complication is uncommon.

 

[Graybeard]

Laurie, you are the greatest!

 

[KCAE]

I have had 2 at Mass General, in May and July. Within 90 minutes I walked to the train, rode to the airport, and flew home. They are using a new needle that prevents the leakage of spinal fluid. I have had no issues with these spinal taps.

 

[lgelb]

You are too kind, GB Always hope to be of help.

On rereading this thread, Neil & all, I have to say that I see red when I read "...clinic planning to do..." Whether or not you agree to the LP, it's your life and health. As I know you know, clinics can't plan or do things. People do. When people substitute the past, protocols or traditions for indications, reasons and rationales, they more often commit or omit actions that negatively affect your wellbeing.

As you travel the ALS or any health journey, it pays to be alert to the "book club" (negative option: you get a book every month unless you say no) aspects of the health care system, and to be a "positive consent" patient who communicates and demonstrates that you are still in control of your care to the fullest extent possible, because your health is your own and no clinician or guideline suffers what you do.

I'm not saying this well -- it's a complex topic but something I feel compelled to say periodically.