Lumbar puncture test

[vivi]

Finally my husband got the appointment with the specialist, mid June. It is for a lumbar puncture. Has anybody got this test before? My husband is too scared and doesn't want to go through with it. Is it that painful? Or risky? And is it really necessary? What is it for?
The appointment letter doesn't have any explanation.

Appreciate all help.

vivi

 

[lostinlouisville]

Vivi

I had one done months ago, mine was in combination with another test,and I stressed for days and when it was over, I could not believe how easy it was. A little pressure when they insert the needle, but not really bad at all. I am not completely sure what they are looking for maybe autoimmune, it is just a more complete test than a blood test . Someone correct me if I am wrong. Mine came back with elevated igg levels, which I think point to autoimmune. Hope this helped.

Renee

 

[vivi]

Renee, thanks for your reply. Yes it helps, and I hope I can convince my husband it's not that bad.

 

[Shatzie]

I have learned from experience that when you get a lumbar puncture or spinal tap, you should insist on having it done in radiology. I was diagnosed at a ALS specialty clinic, but they had to stick me five times to get enough fluid to test. Then I had a severe spinal headache for the next 24 hours. Now I have had three babies without any drugs, but I felt like I was going to die with this headache and nausea. So I had to have a blood patch. A blood patch is where they take a small amount of your blood and inject it into the spine so that it will clot and seal the hole that is leaking spinal fluid. When the radiologist got me on the table face down and looked at the needle marks on my back, he said "Now you know you should always go to radiology to have a lumbar puncture!" Needless to say I agreed with him. I was also told, after the fact, that you should have caffeine several hours before and for the next several hours after the procedure.

 

[Jennifer51]

I had one done as the final test to be done in a whole series of tests to rule out any other diseases. I know they want clear liquid to rule out one, then there are a series of other lab tests they do on the fluid to rule out others..sorry I can t remember what they were..... The test was a bit uncomfortable, slightly painfull in my case as the doctor could not get where he wanted first time..but not anything to worry about. The worst of it is potentially the headache, which I was warned about but did not get. I had to stay flat on my back for 24 hours, and maybe a hint, I drank tons of water (because I have kidney problems) but they seemed to think that the amount of fluid I drank may have stopped the headache coming..worth a try. wish you luck with it.

 

[John1]

Vivi,

The lumbar puncture draws spinal fluid for analysis. The test is used to rule out other ailments that can be confused with ALS. Many of these are treatable. There is not definitive test for ALS so it must be diagnosed by exclusion. There is no question to my mind that your husband should have it done. Imagine if he died from something in a few years that could have been treated after diagnosis by lumbar puncture but he didn't have it done because of the fear of pain. The most pain seems to be associated with a possibly severe headache following the procedure. When I had it done, the clinician had difficulty getting the probe through to the fluid and he had to make repeated attempts. Yes, this hurt a bit but in the overall scheme of things it is nothing. I had only a mild headache afterwards. Unfortunately, the analysis turned up no other ailments and the verdict was ALS.

 

[mango]

My LP was painless. I asked the doctor if I could still go on a big offshore fishing trip that I had planned. He said, "sure".
I didn't know that nearly 33% of all people who have spinal taps get the famous "lumbar puncture headche". So I went fishing the next day. The next five days after that were hell. My Neuro later told me that other doctor was wrong.
Just make sure your husband stays flat on his back for 24 hours after the procedure. He still might get the headache, and if he does, tell him to hang on.

 

[crystalkk]

The headache could last up to 48 hours. If you lay flat down it goes away immediately.
Know one told me about drinking caffenine, i had the headache for 48 hrs.

 

[vivi]

it doesn't seem so bad after all. For the headache, didn't hey give you any strong pain killers? like petadine?

 

[mango]

painkillers, which we all know I love, did nothing for my LP headache. Like Crystal said, you have to lie down flat, drink plenty of caffeinated beverages, and wait. I like ice-packs too. Mine lasted 3 days, but the days on either side weren't good ones.

 

[laurel]

Hi Vivi,
I have had three in the last 20 years. There were not painful in the least--only felt a little pressure. Hubby who has CIDP had one in 2007 when being diagnosed. He had no pain either and he is a "sensitive" guy <g> and I would say somewhat phobic of needles in general. It is very important to remain flat for a few hours after the test as you don't want any leaking of the spinal fluid. On my third one, I went out for lunch after only staying put for a couple of hours. I had the worst headache of my life. Literally bed ridden for several days with ghastly headache. But the test is not painful and it is very helpful in diagnosing.
Laurel

 

[kevinw]

Maybe just a "worst case scenario"

I had my "LP" done on a Tuesday in a radiology department. It started off fine while I was laying on my side, then the needle must have hit something near my spine because my leg started to shake and viberate like it was being electrocuted. The doctor stopped and asked if everything was "ok", I said it was fine (not extreme pain), but my leg was still viberating. They put me on my stomach and tilted the table so my legs were lower. From that point on it went fine. Until I attempted to go to work the next day, just to do desk work. I only made it until noon and I thought my head was going to explode. I went home and stayed flat on my back and it felt fine, each day I attempted to get up and shower for work, but the headache kept coming back. I was off of work from Wednesday afternoon straight into Friday. Finally on Saturday morning I couldn't take it anymore and I knew something needed to be done if I was going to make it into work on Monday (plus the next day was Super Bowl Sunday). So my wife contacted the doctor and he was on call for the hospital that weekend anyway and said to come right in. While he was explaining the "blood patch" I was laying down in the waitting room just wishing he would get started, yet he was still saying we could give it a few more day. I told him that was not an option and he did the blood patch procedure. After he was done I layed on the table for only 5 to 10 minutes and he said I could get up and go if I was ready. I could not believe it, but I sat up, got dressed, and walked out of there without a bit of pain. And I was still able to enjoy a Super Bowl party the next day. I just wish they would have done the blood patch sooner, I never want to have that pain up the back of my neck and head again.

 

[vivi]

Thank you for sharing your experience. Very helpful! What is a blood patch exactly? Shouldn't it be a standard procedure if that helps stopping the headache? I'm start thinking maybe it would be better to stay a few days in the hospital so they monitor you and give you morfein or something. I can't beleive that they just send you home. I had once a really really bad headache, nothing like I ever had before, so I kind of know how it might feel. But mine lasted only 1-2 hrs. If it would have lasted anything more than that, I don't know what I would have done.

 

[hopingforcure]

kevin.
I could of written your story. Except mine lasted 10 days. How are you dooing Kevin? have not seen you around for a while.

 

[kevinw]

Hi "vivi & hopingforacure"...

vivi - I feel the same way you do, I think it should be done right away. I forget the amount on the bill statement that I got, but I remember telling my wife that I would have paid it myself if the insurance wouldn't (it really didn't cost all that much).

I should mention that it was after a long day of tests and I really wasn't in a good mood by the end of the afternoon so I may have influenced there decision to get me out of there. Also, within 2 miles of the hospital I got sick and my wife had to pull over. I am sure it didn't help hopping out of the truck and bending over like that to get sick. I just don't think I gave my spine enough time to heal and not leak.

hopingforacure - I have been doing good, my legs are still hanging in there. I just have to use a cane for short distances or if we go shopping or are going to be on the go all day I use my electric scooter. Other than that I've lost a few pounds for some reason, but can not really tell where (it sure wasn't my stomach :-D). But overall things are going good now that the weather is getting warmer. I have been bouncing on & off here, and as always enjoy reading your posts, you always have a lot of great insight into different situations. How have you been?