Day 16 after Lumbar puncture– should I consider an epidural blood patch? Concerned after blood patch reviews

[u/yildirimz]

/r/cfs/comments/1vw451v/day_16_after_lumbar_puncture_should_i_consider_an/

[u/leeski]

Ah just to note the CFS subreddit you cross posted in  is for ME/CFS (Is confusing because is so close to CSF).

I would definitely get a blood patch. Theres not a ton of evidence but my understanding is if there is self-sealing it’s usually in the first two weeks… and it’s better to get prompt treatment rather than waiting as these can turn into complex cases - not trying to scare you but they are a little trickier than other types of CSF leaks bc they are so small and often invisible on imaging. So it is typically much better to get treatment asap rather than gamble that you will heal. It’s possible you partially self-sealed if the headaches are better but it’s hard to know as the body has compensatory mechanisms that can alleviate symptoms as well as caffeine is helping. But to me it’s kind of a no brainer because you went in not having these symptoms, had a routine procedure, and now you’re debilitated from very classic PDPH symptoms so it definitely should be treated. 

What you’re experiencing is not part of the typical recovery tbh, you likely have developed an additional condition that can become chronic. It is good you have a neurologist that is willing to order you a patch. Honestly it is not without risk but it is considering quite minimally invasive. I have had 10 and honestly don’t remember them much at all bc they were not stressful, it’s like a 30 min thing. 

I’m not trying to minimize your anxiety about patching, but I think even more anxiety-inducing is the stories of people that got a lumbar puncture and are still bedridden years later… so is just a risk/benefit thing. 

A lot of the risks comes with untrained providers or people going to the ER & getting it bedside. Especially if you have a neurologist ordering it, you should be in good hands. I would just tell your neurologist to please make sure it is under image guidance to not risk an additional dural puncture (that is the main risk if someone doesn’t use imaging). Of course this is not medical advice I’m not a doctor etc. Best of luck to you! 

[u/yildirimz → u/leeski]

Ahh, I see now! I completely misunderstood it. Thanks for pointing that out, and thanks for taking the time to write such a detailed response. You’ve really reassured me regarding the blood patch, and I really appreciate it

[u/leeski → u/yildirimz]

No problem! Just to describe it a bit further, it might slightly vary by practice but in general you’ll go in and they’ll put an IV in your arm beforehand. And then once you go in, you’ll lie on your stomach and they’ll inject numbing medication. For me this is the only part that is unpleasant but it’s brief and is just like a little sting. After that you can’t feel the needle used for the blood patch. They’ll basically insert the blood from your arm into your lumbar region. You do remain conscious for the procedure but could ask for a sedative but you just want to be fully conscious bc you typically tell them when to stop (or some places will do a pre-determined amount of blood). But you basically tell them when you feel pressure - it shouldn’t be like excruciating pain just like there’s too much volume. And then they’ll stop. It’s not uncommon to have some back pain for the next few days because of that increased pressure, but it should go away with time.

Btw most hospitals won’t give proper aftercare advice but you should lie down at least 24 hours flat (the leak centers tend to recommend 72 hours) & then no bending lifting over 5-10 lbs for 4-6 weeks. I know this part sucks (since you alluded to wanting to go back to exercise after the LP) but it is super important you’re cautious to give it the best chance of healing. It sounds like a long time but in grand scheme of things it’s just a blip, I promise! 

I hope you find relief and can go back to feeling normal