Spinal Tap/Lumbar Puncture

Dio · September 4

Has anyone done a spinal tap/lumbar puncture recently to help diagnose (rule in/out) which neurodegenerative disease is affecting the patient? Our neurologist says the more advanced techniques are much safer, guided by x-ray during the procedure. I'd like to hear real life experiences. Reason for asking is that DH is extremely nervous about doing this procedure. His last procedure didn't go well. A "routine and standard" procedure took 45 minutes and barely got enough fluid for testing.

Jgirl57 · September 4

My DH had the lumbar puncture. He tolerated it well. The report read: “pathology consistent with Alzheimer’s disease “. I’m guessing this is similar or the same as spinal tap. They did numb the area prior to placing the needle and the doctor talked quietly to him the whole time.

persevere · September 5

My wife had a lumbar puncture at the Mayo Clinic in Jacksonville in 2019. It was fairly routine although I know she felt some pain and it was, of course, a bit nerve racking leading up. And yes, the findings were consistent with Alzheimer’s and whaddya know - they were right. She’s now in stage 7b.

notequipped · September 5

No. My Mom was diagnosed via brain MRI, blood test and a neuro psych evaluation.

Nova1 · September 5

I had lumbar tap done to clarify if my struggle with Babiosis, a tick bourne parasite that attacks blood cells. I was experiencing exaggerated lose of memory and cognitive ability. After multiple blood test they could not identify what was causing the problems. They thought there was some sort of residual issue and wanted to look in the spinal fluid for any evidence. God bless my wife, she suggested to look for Alzheimer's as well. Bingo!

The procedure was painless and directed by the x-ray, if my wife had not suggested the test I would not have known my diagnosis until much later. While the diagnosis sucks, at least I know and can enjoy life awhile before it takes me.

Hope this helps.

SDianeL · September 7

Question I would ask myself: What would the results change? Alzheimer's is a form of dementia, a degenerative disease that results in death. A definitive diagnosis will not change the outcome. Unless the person has early onset and qualifies for a trial, in my opinion there is no need for lumbar puncture. A diagnosis can be made without putting your LO through an invasive test that they won't understand, with brain MRI, blood test and a neuro psych evaluation. Others may have different views but that's my take. I would not have allowed it for my DH and he did have a rare type of Alzheimer's - Posterior Cortical Atrophy.

Dio · September 8

Thanks, Everyone, for your input! If it were up to me, I'd say do the test to know the culprit behind what's going on. I want answers, but not at the expense of DH going through another "hellish" procedure or worse. His MRI last month showed "diffused" brain volume shrinkage, which the neurologist cited as not from normal aging given DH's age but some other, which is why he recommended the spinal tap. DH is an anomaly in all respects, I suppose. So far, at this time, no change in medication is necessary. DH asks what's the point?! He still needs his medication cocktail to live a rather normal life. I guess only time will tell, and how he's evolving for next steps.

dcare45 · September 8

https://alzconnected.org/discussion/comment/281765#Comment_281765

I agree with @SDianeL on this. We have passed on a few tests because I felt they would be to stressful on DW and would not change anything anyway.

Eloise0304 · September 8

Agreed. Tried this with my husband and he could not be still enough. They sedated him to attempt again. It did not find anything of significance and wouldn't ever do it again.

MsLadybug · September 9

https://alzconnected.org/discussion/77022/spinal-tap-lumbar-puncture

A few years ago, DH was referred for a lumbar puncture to assess whether his shunt was properly functioning - to see if his CSF pressure was too high. Neurologist was unable to draw enough fluid in a manual office procedure - so he referred him to have the procedure with x-ray guidance. That procedure also failed - the doctor poked him 3 times and still was unable to draw off enough fluid to complete the testing. The next day, DH had a significant amount of back pain, which fortunately resolved after a few days. Subsequent CT scan revealed major spinal degeneration, so maybe that was why two different docs couldn't access the fluid in the spine. In the end, DH's neurologist recommended abandoning this diagnostic test, as the risk seemed to outweigh the benefit.

Dio · September 9

https://alzconnected.org/discussion/comment/281861#Comment_281861

Thanks for sharing! Confirms DH's fear. Helps us make a sound decision.

Dusty217 · September 9

I had a spinal tap myself… different reason. I also have disk and degeneration issues with my back. Worst procedure I've had. MRI, Neuropsychologist and P Tau 217 was how my hubby was diagnosed with AD

Lethe · September 10

Dio, Did he have the relatively new blood test for Alzheimer’s?

Dio · September 12

https://alzconnected.org/discussion/comment/281945#Comment_281945

No. An earlier PetScan negated it. Of course, that was then, this is now. Who knows if AD may develop later in the process as we age.

Lethe · September 13

O

https://alzconnected.org/discussion/comment/282091#Comment_282091

I was curious because if they were doing the LP to look for Alzheimer’s then the blood test is way less invasive. MY DH had “normal” Pet snd MRI but the blood test was positive for Alzheimer’s.

Spinal Tap/Lumbar Puncture

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