🧪MS Lumbar Puncture Procedure – Don’ts🚫 and Do’s ✅
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SUMMARY
Jen DeTracey shares her experience with having a lumbar puncture. What happened for her afterwards. This video and blog below also share the Don't and Dos that are important to follow to have the best recovery from this procedure.
🧪MS Lumbar Puncture Procedure – Don’ts🚫 and Do’s ✅
Let's talk about the MS lumbar puncture procedure and the do's and the don'ts.
Note: I am not a doctor or medical professional, I'm sharing my own experience as a woman that lives with MS and the research I have conducted.
The combination of the lumbar puncture and the MRI are the golden standard to determine whether you are living with MS or not. However, lumbar puncture results will only show up for 85 to 95% of all people that live with MS. It doesn't always show up on the lumbar puncture report even though you may have MS in your brain or spine.
I was diagnosed over 11 years ago. I was on a speaking tour. When I came back from that tour, my left lip was drooping. I couldn't write with my hand and my foot was dropping and I went to emergency and they fast track me through then gave me a CT scan.
The next morning a neurologist came to see me. She said, "Jen, you've got inflammation of the brain. We need to get it down as soon as possible, but first we're going to do an MRI."
I was admitted the hospital and the next morning an MRI conducted. The results showed my brain was riddled with lesions. MS checkmark. When the neurologist came in and this was a different person. He arrived at my hospital room door with a big ego and a diagnosis. He said, "99%, you have MS. Now I want you to have lumbar puncture." I asked him, "Do you know how to do a lumbar puncture?"
"Yes, I do. I've been doing them for 25 years. But I'm too busy to do it for you."
All right. And he left as quickly as he arrived. The resident doctor came and talked to me but didn't know anyone else who had experience so I declined the lumbar puncture. However, the neurologist came back that next more and he realized he could use this for a teaching opportunity for his students. I said, "Yes, bring them in by the bus load."
The neurologist came to my bedside with a sterile plastic back with everything he needed to do the job. I was wearing a gown. He asked me to lay on my side with my back, facing him and bring my knees up to my chest. He then put rubbing alcohol on my back and used a needle to freeze the area.
I felt the needle go into my lower back. Then the needle went in for the lumbar puncture. I didn't feel any pain. The needle is made of a little tube used to remove between one and two tablespoons of spinal fluid. I was aware it was happening. It felt a little strange in my mind. It takes a time to get that fluid out. Maybe 10 minutes or less.
After the needle was removed, he applied a Band-Aid and asked me to lay on my back. So that was the procedure. It really didn't take that long. The longest part for me was waiting as the fluid came out. I had no knowledge of lumbar punctures being used for MS at the time.
I was a newbie to this experience. I know a lot of people that are told that they might have MS. Maybe they've had an MRI, or maybe they're told they should have a lumbar puncture. First, you might be feeling nervous and that's understandable. You might Google the procedure online and hear that people had major back problems or issues.
I'm going to tell you some things that are going to help you to ensure that you are less likely have these issues.
However, you want to make sure you have someone that's qualified to do the procedure. And again, I'm sharing this from my own experience and from some key research that I found from the Mayo clinic. So I'm not an expert, I'm not a medical professional. I'm just somebody like you that lives with multiple sclerosis and went through this process. So here's the key to why are they doing this lumbar puncture process on top of an MRI. It's because there are so many health concerns that can come up in that report, for example Lyme's disease, Cancer or HIV to name a few.
The goal is to rule out what it's not and determine if MS is present. Or if there is more than one health issue showing up. In the lumbar puncture report, MS shows up as oblong bands or rings. If you have more than two rings, then that indicates multiple sclerosis. Now, again, it doesn't show up for all people who may have MS. 15% of people may have a negative results yet have MS in their brain and/or spine.
That's why it's also important to have the validation process using both methods. Also you don't want to be treated for MS if it's not necessary.
Here are the important Don't and Do's.
*After the lumbar puncture here's what to avoid:
1. Don’t remove the bandage for 12 to 24 hours
2. Don’t do strenuous activities after a lumbar puncture for a week.
3. Don’t drive for 24 hours
4. Don’t take a bath for 24 hours
5. Don't bend 24 hours
6. Don’t lift more than 10 pounds for one week
**Watch the video to get all the details.
*After the lumbar puncture here's what to do:
1. Do rest and lay on back when you get home for at least 1 hour or more
2. Do use an ice pack on the part of your back where the needle went in for 20 minutes 3 – 4 on the first day – cold pack/ice in towel
3. Do drink plenty of fluids. Water is best and Gatorade if you need to hydrate more.
4. Do take Tylenol for headaches or pain (see more below)
5. If you drink caffeine drink continue with the same amount to avoid withdraw
6. If you have bleeding, major pain or anything that doesn't feel right, go to emergency
7. Do make sure you have all to the items you need that are listed above you so you can go right home after your procedure to recover.
*Information is from the Mayo Clinic (Don'ts & Dos)
Headaches can be common after a lumbar puncture. Some people experience massive headaches for a few days or even a week. My neurologist recommends 2 extra strength Tylenol and 1 extra strength Advil (iburofen) to combat these headaches. [You must eat something before taking Advil].
Know that you can experience a little bit of discomfort from swelling. What happened for me was that I came home from the hospital the day after I'd had that lumbar puncture. I did have soreness in my back.
It wasn't excruciatingly painful, but it was noticeable. I likely didn't ice, which could have contributed to this happening. I did take Tylenol for the discomfort. It did stay with me at a low level for a couple months and then it disappeared.
So if that happens to you, do not panic or freak out. If it's a low level discomfort, it most likely is going to disappear. It's just going to take some time because having the fluid removed upsets the equilibrium in the body.
Although I was an in patient when I had this procedure, much of the time lumbar punctures are done in an outpatient environment.
Extra Note:
It's important to relax as much as possible during the lumbar puncture. If you want additional tools to help you with stress. You can sign up for The MS Stress Release Process™ online course.
Jen DeTracey is the founder of Women Thriving with MS and a certified coach. Women Thriving with MS is an online community for women living with MS. You can join the private Women Thriving with MS Facebook group it's free and YouTube channel. Jen offers online courses, a membership and coaching.
Jen's been living with multiple sclerosis for over 11 years. She went through this process of surviving with MS to striving MS to thriving MS. She is a guide, coach and teacher who helps you move forward on your journey from surviving to thriving with MS.
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