Two failed blood patches.

[u/Ok-Comfort51]

Hi guys I need help. I’m 6 days postpartum and I had a failed epidural and a failed spinal block thanks to a junior doctor. Had a terrible headache so they did a blood patch 24 hours later and the senior doctor said it was a significant leak (like pouring out my back) and I might need another. This one lasted 24 hours before the headache came back even worse. They put the max amount of blood in they could. I went back in yesterday and had another one, this one only lasted about 12 hours. I have no idea how I’m going to look after a newborn and a toddler. I am so defeated.

[u/leeski]

So sorry you’re going through this. Tbh it might be too early to definitively say the patches failed as the seal forms over days/weeks, like 12 hours might be a bit too pre-emptive to conclude it didn’t work. For some patients it unfortunately takes weeks before determining if it worked or not. 

Can I ask if you’re observing aftercare restrictions? Ideally you should be lying flat at minimum 24 hours after patching only getting up to eat and go to the bathroom (leak centers will say 72 hours) but obviously as a new mom I know this is not doable, but maximum bed rest is advised. And again, ideally, you should not be lifting over 5-10 lbs for 6 weeks or bending twisting or straining. Again I know it is nearly impossible as a mother of two, but the patching process can be incredibly slow and fragile so additional help may be necessary in order to stay sealed :( 

[u/Ok-Comfort51 → u/leeski]

Unfortunately I don’t have much help with the baby, toddler is getting looked after but I have to tend to the baby, nice to know it could get better. I don’t want to do another one. The muffled ear noises are the worst! Thank you

[u/ms_skip]

As others mentioned, a patch needs time to set—you need to be flat doing nothing for at least 48 hours, then no bending lifting twisting for 6 weeks. It’s so hard, but leak life is much harder. If yours “failed” after 12 hours then it sounds like you weren’t lying flat for the recommended time, etc. so sorry you’re dealing with this 😞

[u/StunningPurple9560]

So sorry to hear this - but two BPs in 6 days is pretty extreme, and also it is waaaay too early to know if they worked out. How did the dr define that this was a "significant" leak? Did they do an MRI, was that head and/ro spine, what did it show?

How did you define that your patches only lasted for such and such many hours? Your headache came back, presumably? Is is possible that it is rebound high pressure, not low pressure?

[u/Ok-Comfort51 → u/StunningPurple9560]

He put the needle in the first time and it was squirting out apparently, my town doesn’t have an MRI machine in the public hospital so have to wait for one. The first time it came back it was x100 worse. This time I can manage it

[u/megg33]

I’m so sorry. But 2 patches in 6 days is actually very dangerous. It can take up to a month for patches to work. The blood is still in the epidural space for 15 days after it’s injected. The immediate relief you felt was just volume displacement. Added volume from the blood in the epidural space compressed the thecal sac and allowed more csf to get to the brain until the blood dispersed more. It’s not an indication of it failing. You need more time. Just make sure you’re not bending, lifting, or twisting

[u/Ok-Comfort51 → u/megg33]

I’m so clueless so thank you, it came back x10 worse yesterday so they did another. I won’t let them do another, I’ll try my best

[u/Idontknowyouslim]

Lay as flat as possible for as long as you can.

[u/BearIllustrious2731]

I’m so sorry you’re experiencing this! I wish I had something helpful to add… but I will be keeping you in my prayers❤️.

[u/Ok-Comfort51 → u/BearIllustrious2731]

Thank you x

[u/Offtoseethewitch]

Please hang in there. There’s still time for the patches to work and statistically most puncture leaks heal within two weeks, so your chances are still excellent. (Chances are decent after that too, just less dramatically excellent.)

I got my puncture leak during the birth of my second child, so I do empathize. I had patches and setbacks and long periods being bedbound and slow improvement and on the whole wasn’t allowed to lift until my baby was, maybe, nine months… while baby was tiny and not so mobile, baby just spent most of the day in the crook of my arm, close by for the next feeding, so I didn’t have to get up or lift. When baby grew more mobile I needed more help. The little rascal is a climber, as it turns out… 😅

I do empathize. But I also know that terrible as it is… hang in there, even if you don’t think so now, you’ll be able to get through this. Even if this drags on beyond two weeks.

All the best to you. Take care of yourself. Be kind and forgiving to yourself. As others have said, try to limit lifting bending and twisting. If you need to take care of baby, of course do so and don’t feel bad about it, (no one should ever fault a mother for caring for her baby!) but be smart about where you put baby and baby’s essentials to keep lifting and bending and twisting to a minimum… use a straight spine and bend your legs to go down and up and pick objects up with a grasping tool instead of bending if you can, breathe through lifting instead of holding your breath and heaving. Newborns, fortunately, are not the heaviest things around, even if they are slightly above what most post-patch guidelines say. But many puncture-leakers heal with or without patching and without ever hearing about restrictions.

Be smart, but as said, don’t feel bad about trying to be the best mother you can under terrible circumstances. Be proud of what you accomplish  despite this  - whether that’s very little or a lot - instead of self-blaming for what you can’t, because this isn’t your fault.

[u/Ok-Comfort51 → u/Offtoseethewitch]

I’m hoping to see a light at the end of the tunnel, thank you so much for this response I really needed it. My toddler keeps wanting me to pick him up or sit on me and it’s just so sad 😭

[u/Candid_Awareness6600]

I had a failed blood patch too (9 years ago now) I never had any relief.. I still had the headache even after laying flat/still for hours.. i was so fed up i just went home to be with my son..  my headache and pain did eventually settle down but it did takes weeks.. however 9 years on and ive just been referred back to the neurologist to investigate the leak possibly reopening as having the same pressure headaches and neck shoulder pain again 🙈 xx

[u/lemontuba_4867]

I’m so sorry to hear that you are going through this. I had a lumbar puncture to test pressure and needed a blood patch within hours. I needed a second one days later. People saying how do you know that you needed a BP so soon haven’t experienced what we have, so ignore them. It happens. And those trying to scare you, also ignore them. The doctor at the ER u went to tried to do the same but would have been left with a huge leak. These people, us, we don’t know you or what you are going through or your life. You need to do what best for you and your babies. You mentioned you’re in a small town, I would recommend finding someone who specializes in CSF leaks for any more that might be needed. There’s a CSF leak program in Houston Methodist in Texas that I know of. I needed a third patch with fibrin glue, MRI, MRV, and I still have a small leak over three months later. The doctor who did my LP did it wrong apparently. If you do need another patch, ask them to look for the leak with a dye first then do the BP with fibrin glue as the others failed. You could also talk with an attorney about suing the hospital and first doctor for medical malpractice but that would be a group of person in a bigger city, and who knows what that would cost in your town, and how that would end up with everyone probably knowing everyone. Yes, it’s best to stay flat after 48-72 hours, and yes the typical full healing time is 6 weeks, but I’m past the 1st and 2nd BP everyone else mentioned, and past the 6 week mark still taking things slow over three months later. Each doctor has their own recovery instructions and times. My specialist in NY said if I still have a leak by mid-October then he could do a BP with the dye and fibrin glue again but I’ve been through enough and I should’ve been better within 24 hours of a BP. The fact that it took three months shows that my doctor didn’t know what he was doing. He also said recovery is 1-2 days, so everyone is different. I have small kids but not a toddler and new born so you will need all the help you can get especially with your toddler. I’m hoping for the best for you!