Post Lumbar Puncture

Posted by lmcano989 @lmcano989, Dec 12, 2023

I went in for a lumbar puncture early yesterday morning. They informed me about the headaches, but I don’t remember being informed about the stiff neck and upper back pain. It’s been about 36 hours since my procedure and I cannot stand or sit up without major pain surrounding my neck/shoulders and head. Tylenol is not helping at all. Is this normal or concerning?

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What have the docs said?
Here’s my understanding based on what I was told when my son had to have one: the pressure balance of cerebrospinal fluid is very sensitive. And when it gets out of balance - such as when they withdraw fluid in a hypodermic, it takes a hot minute (or even a few days for some people) to get the fluid pressure stable from stem to stern. And while it’s not quite right it can hurt - for some people just a mild headache but for a few sensitive souls a headache from hell.
In a very few, the needle stick fails to seal right off and there is a consequential tiny drip drip drip. I don’t know about now, but 30 years ago they did something called a blood patch to seal it. And then pressure stabilizes.

To be sure they can treat the pain. But I would hope they are communicating with you about what’s going on.

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Hi @lmcano989 It’s not unusual to have a headache following a lumbar puncture. Some patients can also experience a stiff neck and upper back pain which should disappear over a few days.
It’s caused when a small amount of the spinal fluid leaks from the area where the sample was taken. That decreases the pressure exerted by the spinal fluid on the brain and spinal cord which can lead to a headache.

Make sure you drink plenty of water. Sometimes consuming caffeine can be really helpful. I’ve had several lumbar punctures and drinking a caffeinated soda really made a difference for me. Also lying flat can help mitigate the discomfort.

https://www.mayoclinic.org/diseases-conditions/spinal-headaches/symptoms-causes/syc-20377913

If this hasn’t eased up by tomorrow, you can certainly call your doctor’s office to double check. Usually when you have a procedure done, you’re given a phone number to call if there are any questions or concerns. It will give you peace of mind to get their opinion. ☺️

If you don’t mind sharing, what lead you to needing a lumbar puncture?

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@loribmt

Hi @lmcano989 It’s not unusual to have a headache following a lumbar puncture. Some patients can also experience a stiff neck and upper back pain which should disappear over a few days.
It’s caused when a small amount of the spinal fluid leaks from the area where the sample was taken. That decreases the pressure exerted by the spinal fluid on the brain and spinal cord which can lead to a headache.

Make sure you drink plenty of water. Sometimes consuming caffeine can be really helpful. I’ve had several lumbar punctures and drinking a caffeinated soda really made a difference for me. Also lying flat can help mitigate the discomfort.

https://www.mayoclinic.org/diseases-conditions/spinal-headaches/symptoms-causes/syc-20377913

If this hasn’t eased up by tomorrow, you can certainly call your doctor’s office to double check. Usually when you have a procedure done, you’re given a phone number to call if there are any questions or concerns. It will give you peace of mind to get their opinion. ☺️

If you don’t mind sharing, what lead you to needing a lumbar puncture?

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Thank you so much for your response. It was very helpful.

I had bad eye pressure which lead to loss of eye sight in my right eye. We learned that it was optic neuritis which created the suspicion of MS. An MRI showed lesions on my cervical spine but none on my brain so a LP was ordered for a final diagnosis of MS.

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Please call your doctor to see if you should be concerned. If they’re not in leave a message.
Feel better
Deb

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@lmcano989

Thank you so much for your response. It was very helpful.

I had bad eye pressure which lead to loss of eye sight in my right eye. We learned that it was optic neuritis which created the suspicion of MS. An MRI showed lesions on my cervical spine but none on my brain so a LP was ordered for a final diagnosis of MS.

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Great insight and advice from Lori! I’m sending good JuJu your way!!

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@lmcano989

Thank you so much for your response. It was very helpful.

I had bad eye pressure which lead to loss of eye sight in my right eye. We learned that it was optic neuritis which created the suspicion of MS. An MRI showed lesions on my cervical spine but none on my brain so a LP was ordered for a final diagnosis of MS.

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Oh gosh, that had to be very frightening for you to lose your eye sight and then possibly having MS. I can imagine the range of emotions you’re going through right now.
Please let me know what you find out with your lumbar puncture. I’ll be sending positive vibes for only good news. But if it does turn out to be MS there are some excellent new treatments available to help control the progression.

Do you have any other symptoms?

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@lmcano989

Thank you so much for your response. It was very helpful.

I had bad eye pressure which lead to loss of eye sight in my right eye. We learned that it was optic neuritis which created the suspicion of MS. An MRI showed lesions on my cervical spine but none on my brain so a LP was ordered for a final diagnosis of MS.

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Hi @lmcano989. Just checking in on you today! Do you feel as though the headache and neck stiffness/pain from the lumbar puncture is starting to get better?

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@loribmt

Hi @lmcano989. Just checking in on you today! Do you feel as though the headache and neck stiffness/pain from the lumbar puncture is starting to get better?

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No, it is only better when I lay down. I messaged my doctor in the Mayo portal, but no response yet. I’m growing concerned. I am wondering, at what point do I go to the ED?

Ps. Thanks for checking in

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That’s unfortunate. For real clinical concerns I would advise always calling and speaking with the nurse. Do that first thing in the morning. Follow the advice Lori gave you and hydrate. And call them when they open in the morning. You may still have a drip and need a patch but you need input from your doc.

I’m going to add my standard refrain:‘ you know you. If you are concerned and things just don’t feel right, call the office right now and talk to the doc on call.

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@lmcano989

No, it is only better when I lay down. I messaged my doctor in the Mayo portal, but no response yet. I’m growing concerned. I am wondering, at what point do I go to the ED?

Ps. Thanks for checking in

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You need to go to ED and get a blood patch if you don’t hear from dr. I had the same thing with fluid leaking and could only lie flat because of pain. They work! You will be glad you went. Good luck

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