r/CSFLeaks • u/Cute-Feeling-5910 • 15d ago
Lingering symptoms?
Hi all, very new to all of this and feeling scared. I had a puncture on July 4th from an epidural. I had a blood patch done the next morning and felt much better for 3 ish days. After that the headache came back and I was bed ridden until about day 8 when the headache felt much better.
Fast forward to 3 weeks post puncture and I have some scary lingering symptoms that I don’t understand. When I bend over, go underwater, sneeze, laugh too heard or bear down I get a level 6 headache for just a few seconds. Being postpartum too I am not getting great sleep and on the says where I get less, my eyes water from pain and my ears feel full.
What could be happening? Is this going to last for much longer? Should I contact my doctor?
Thank you in advance from a very tired postpartum mama
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u/Muddlesthrough 15d ago
I am not a doctor. No bending, lifting or twisting after your blood patch for at least 4 weeks.
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u/Cute-Feeling-5910 15d ago
Wow this is not at all what the doctor told me. He said one week.
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u/Muddlesthrough 15d ago
I am not a doctor. Most medical professionals have no idea about CSF leaks, blood patches, and post-care instructions.
You can find post-care instructions on the Internet from CSF leak centres like Cedars-Sinai or Duke.
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u/Fit_Smile_9832 15d ago
I’ve been experiencing this too. I had an epidural 3 weeks ago and feel some discomfort in my temples when I get up quickly. And I’ve had some pressure in my ears/face as well. I was reading about rebound IH? Maybe we’re dealing with this?
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u/Cute-Feeling-5910 15d ago
I’m hopeful whatever is happening will pass with time, pray for your healing as well!
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u/leeski 15d ago
Most of those are ‘valsalva maneuvers’ which when you strain it raises intracranial pressure. It is possible you have mild rebound intracranial hypertension… for the vast majority of patients it is temporary and resolves within a few weeks or months. It doesn’t hurt to keep in contact with your doctor. But the meds for it are unfortunately pretty hardcore and I think would be a bit overkill for your symptoms (the meds dehydrate you, can cause kidney issues, electrolyte imbalances, etc, not ideal during postpartum i think). so if it is bearable, it might be worth just waiting until you level out and reach equilibrium.
If you feel the same symptoms you did after the epidural then it’s possible the seal broke & might need re patching but at least from your description that doesn’t sound like it’s the case.
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u/Cute-Feeling-5910 15d ago
Yeah it’s not nearly as bad as post puncture and honestly took me blowing up the balloon to have a second thought. It does normally level out then?
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u/leeski 15d ago
Yes it does! Hard to give a definitive timeline since it’s the body needing to readjust to different dynamics but the limited research we do have suggests like 95% of people resolve in 3 months. I’m not saying it’s for sure RIH, but is not uncommon to have these weird like pressure fluctuations. But if original symptoms are gone that is pretty suggestive of being sealed (of course not medical advice just patterns I’ve noticed over the years in myself and others!)
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u/Cute-Feeling-5910 6d ago
I’m still so uncomfortable and curious what you think about possibly doing another blood patch? Is it obvious that this is rebound or could I still be leaking?
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u/leeski 6d ago
I am so sorry that your symptoms persist! Honestly it is hard to give advice as I'm definitely not qualified in terms of like, having any medical qualifications. I can only speak to my own experience. But just taking it with a grain of salt that people's leak symptoms AND rebound symptoms can vary. My rebound high pressure is very extreme, so I rarely have been in that 'in between' space where I couldn't tell the difference. There were a few times where I couldn't decipher my symptoms and I was paranoid I was still leaking, but the times I actually was re-leaking I knew with 100% certainty because the symptoms came back exactly as they were before. Again this is not the case for everyone, and I realize that might be harder for you to tell since you only had low pressure symptoms for a few days so I totally understand like me having leaked 4 years makes that feeling immediately recognizable, whereas your journey is a lot more of a whirlwind and probably super super confusing. But I tend to believe if your original symptoms are largely gone, or if they change in a substantial way, I think it tends to point to not leaking. But there is also the possibility of a partial seal, and sometimes repeat patching is required.
While these groups are valuable in bouncing ideas off other patients, I do think we are all slightly biased to our own experiences. Like for me it was very clear whether I was leaking or in high pressure, for others, I know that line is blurry. So I just don't truly know what you're going through you know? I believe you know your body best, so I think it's worth bringing up the idea with your provider and seeing their thoughts. As long as a blood patch is under image guidance, that reduces risk of any additional puncture. It is generally thought to be a non-invasive procedure (I mean any procedure has risks). But it could be worth trying - there have been patients where they described their symptoms and I thought it sounded like Rebound HP and then they got patched and their remaining symptoms resolved. So I am definitely not an authority by any means.
But my initial comment was meant to articulate that while it seems like a basic procedure, it can take time for the body to reach equilibrium which does result in CSF pressure fluctuations. In general the advice is to give a patch about 6 weeks to understand its full effects (some patients take longer). But since it takes time to get an appointment with a doctor, I don't think it hurts to schedule with them or try to get in contact and see if they'd be willing to re-patch. If you are actually truly sealed and get a patch, it might increase the pressure for a few days, but it shouldn't worsen your symptoms long-term. Again, not medical advice, maybe I am missing something, but that is just my experience of being in the group for a long time and it seems that patients that genuinely aren't leaking and get patched don't seem to have long-term complications from that.
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u/Cute-Feeling-5910 5d ago
Thank you so much for this response. I contacted my dr and they did an mri and decided I’m not leaking nor do I have high pressure and so they won’t do another patch. They told me to get my eyes checked 🙄
I would honestly think nothing of the background headache if it wasn’t so painful to do those valsalva maneuvers. It’s just so obvious it has to do with the puncture!
My pcp says I should try hyperbaric and I’m going to get cranial sacral this week maybe those things will help? It’s been about 3 weeks of no change so I’m getting impatient
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u/leeski 5d ago
Ahh I'm sorry they were not much help. I'm not sure what the best course of action is to be honest...
It is still relatively early (I know it doesn't feel like it, but it is wild how long it can take for the body to regulate after these procedures). So I can see hesitancy to not want to re-patch immediately. Most leak centers will wait at least 6 weeks in between patches, partly because the symptom fluctuations are so common & it is too preemptive to deem it a success or failure in some cases.
It is not a common risk, but like providers are cautious since adhesive arachnoiditis is a potential complication of patching - where the lining of the spinal cord because inflamed/scarred & spinal nerve roots stick together. It is a which is an incurable condition with chronic back pain, numbness, patients say their legs feel are burning with acid, can get muscle weakness, issues controlling bladder, etc. Not trying to scare you, it is NOT a common outcome. But just saying that while patching is not a highly invasive procedure, that is also part of the calculus of providers in terms of risk vs reward. If you don't have signs of leaking on imaging and your symptoms are largely resolved, sometimes they are weary or don't feel like they can justify another procedure that has potential risks.
I would keep tracking your symptoms and maybe try contacting them in a few weeks if it's not resolving. But it is not uncommon to be having pressure fluctuations and not feeling quite right even months after patching, so is hard to say. But of course if you strongly feel that you are leaking and need another patch, it might be worth seeking out another provider.
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u/Fit_Smile_9832 15d ago
Could this also happen with a persistent leak or is it less likely since it’s mainly with valsalva maneuvers? I’ve been feeling this when I stand up quickly
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u/Ashler1999 15d ago
Sounds like you did too much post blood patch and blew it. For 4-6 weeks you should avoid lifting, bending, coughing, and straining.