Hello,

My mother was diagnosed with Early Onset ALZ at 57, she is 59 now. I live in another state and am trying to help my father with her care. He has been told that they must do the lumbar tap to get the fluid to confirm what she has. To be put on a study or research program they must have the lumbar test sample. My father isn't sure it is the best way to go. He doesn't want to put my mother through anything unnecessary, especially if it is painful or stressful for her.

If they found out for sure from the test, they may know how to proceed.

Has anyone been through this that can offer advice?

Thank you!

Researchers are tending to look for biomarkers, which are biochemical proteins specific to Alzheimer's Disease.  They can look for amyloid and/or tau proteins in the cerebrospinal fluid.  Knowing this information could confirm a diagnosis of Alzheimer's Disease. Many clinical trials ask for this information from the CSF fluid as part of their studies in order to decide if the patient is a suitable candidate for their trial.  Within a clinical trial, the patient receives good medical care.  

I suggest your dad and mom visit the clinical trial office and do a thorough interview.  I attended a clinical trials presentation for prospective patient enrollees.   The presenters answered all questions and showed us all around the facility.  It was like a small hospital ward.  The presenters were doctors and some of the current patients.  The goal is to search for better drugs for treatment, and if a patient can participate, it is a good thing.  But it is not a necessity.  Participation is optional.  

Iris L.

Hi, and welcome, and thanks for asking us in this section.  I am sorry your mom has this.

Here's my two bits on the lumbar puncture.

I did one...and I am glad I did.  However, I knew what I was getting myself into...and I was the one choosing it...which, I think makes a lot of difference. 

I am no sure where your mom is in her journey this...but I hope you and your dad are keeping HER in the loop and allowing her to make her own decisions regarding how SHE wants proceed all this.  Granted, she may already be very far along...but we do no suddenly become idiots on diagnosis, if you know what I mean.  I think, if you are going do it...she NEEDS be part of that decision making process...and she will need know the TRUE risks an what is required of her (not just what some orderly tell her). 

Also...this important I feel.  IF you are going do the puncture...make sure you get more than just what the researchers want.  There is a huge panel of like 23 tests that can be run at the same time, with the same fluid...and if you are going go thru the pain of this proceeedure...it would be a sad loss no to get these tests same time.  They test for many things that are fixable causes of the dementia...like bacterial, fungal, or viral infections...as well as the opening pressure test.  I think it is important consider ask for these other tests...if you plan do it.

I know for me, if there was any chance I could treat an fix this....I wanted that option.

The second bit about lumbar punctures is no so much the procedure itself (staff usually prett good deal with peop like us)...and it does hurt some, but not in way you would think.  What is surprising is when they hit nerves...an that feel.  I feel it is important some one with dementia walking into that be aware of they will get weird sensations their legs as nerves get bumped...so as no become too alarmed.

Lastly, the big pain butt lumbar punctures is the headache after...like worse sinus infection headache an then some.  If she prone agitation, then it is worth trying no get it.  Eve one tells you diff things this...one place eve said it ok get up walk around after it...do no listen them!   Your mom will need to be on her back for 24-48 hours after the lumbar puncture.  An, for me, this is the thing weigh in peop dementia...how well could she understand she need stay in bed? 

I have back pain, so for me...it was a weighing of stay down with back making me agitated.  It was hell for me...but worth it.  An I did get headache...but I was also spend more time upright than should have. If I had do it gain - I would no get up like that.  The headache lasted 2 weeks of agonizing hell.  It is well worth doing what you can avoid. 

She will need be given plenty water an fluids while laying down after.

I got my advice from nurses I know who have had it done them...I ignored the orderlies who said you can get up in an hour an go bout your day. 

Hope that helps.

<3

Greetings,

I  had a lumbar puncture a couple months ago.  I was worried about the procedure based on some of the feed back from people that had it done in the past (Mainly on line), and was hesitant to proceed.   Fortunately I did go ahead and get it done, and can share how it went for me from the point I was wheeled in to the Nurse.

1.  Put on the awesome gown of Humility.

2.  Get placed onto a cart.

3.  Short ride to the surgeon table, where I was provided  with a good overview of the procedure and how long it would take.  At that point, it was time to lay on my stomach while the surgeon  located and marked his territory.  Not like a dog does, but with a marker and a little bit of poking to find the best place to start.

4.  Here was the ouchy part, inserting the needle/probe.  Sort of a dull pain.  On a scale of 1 to 10, I say the pain was a four, so not bad.

5.  So at this point, the doctor is starting to dig in, and I feel some motion, but the pain is not to bad, at worst, maybe a 4.  He explained every thing as he proceeded, and he kept a tape recorder on for his notes as well.

6.  Everything OK at this point, and the doctor removed his syringe of the good stuff he gathered.  He provided an overview of the whole procedure said and all went well. . . Which it did.

7.  Then I was wheeled back into the waiting room with my comfy gown back in place.  In there, I laid on my back and watched Gun Smoke,  ate Jimmy Johns Sub, Drank a couple Mountain Dews  (which is highly recomended to help prevent Headachs).  Was in there for about two Hours, but with TV going and the Staff bring me some Cake, it was all good.

8.  So time to go Go Home!  I declined the wheel chair to the car, and my wife drove me out of the parking lot.  I was feeling fine, so a quick stop to Menard's was OK.  From there, we also had a quick stop to big-R.  Went home, Feeling Fine,  so I cut some Fire wood.  No problem, so I also split the wood that I cut.  Still Feeling fine.

9.  So the next Morning, I went back to work and Life was back to normal. No Pain, No Pills, No problems at all.  So from my experience, it was no where near a bad experience.  Very Little pain, Quick, and essentually Zero recopuoration time

Josey Wales

Hello, Josey.  I love your name.

So I deduce that caffeine and sugar will help in the headache department?  Mountain Dew is notorious for both, and there are times when you want a lot of blood flow to your brain.  My feeling is that spinal taps should be faurly painless as long as you can lie still and cooperate.  Much more traumatic for scared kids or anyone else not in the mood to lie still.

I think the trip to Menards might have been pushing it, but I never pass up a trip to Menards either.

About clinical trials, I wouldn't want to be the one getting the placebo, but Best Practices are free and they are allowed for everyone.

In most adult cases the patient is numbed up before the procedure, the same way  the dentist numbs the gums before a tooth extraction.    So the lumbar puncture should be virtually painfree.

Iris L.

Hello!  I had a lumbar puncture early on when my neurologist was trying to find out what was going on with me.  This was @ 2007-2008.  For some reason, the first test was what they called a "traumatic tap" and no results were obtained.  The next one was done in radiology and was what they called a "guided tap".  This time results were obtained.  Unfortunately, results revealed Crutzfeld-Jakob disease.  Resulted in calls from my State Department of Health.  My neurologist felt very strongly that I did not have this disease and ordered yet another guided tap in radiology.  This time results were negative for CJD.  I had obviously had a false-positive with the second tap. I only had direct pain from the first "traumatic tap"; the guided taps didn't have as much pain.  And as long as I lay flat my headaches were minimal, aided by caffeine soda.

But the lumbar punctures, in conjunction with other imaging tests, SPECT scan, etc. revealed that I did not have Alzheimer's but had frontotemporal degeneration.

Best of luck to you.