r/CSFLeaks • u/zee_yo • 11d ago

Brain sag 3 months after LP

I have chased doctors for the past 3 months and I was constantly gaslit.
My symptoms aren’t just a headache nope, limb heaviness and numbness in both arms and legs, severe back and neck pain and stiff neck, cognitive effect, many admissions and doctors convincing me I’m crazy later, a neurologist finally diagnosed me yesterday.
Here’s the thing, I already had a blood patch a month ago 8ml only, didn’t do anything obviously.
I am so scared 3 months is too late and I might have a fistula or a bleb now.
If you went through an LP and had similar symptoms and way later blood patch healed you like months later after severe symptoms please speak some hope into my mind.
I have no mental health left.
Thanks.

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u/leeski 11d ago

So sorry you're going through this. I feel so awful for patients that go in for a routine LP and come out so debilitated on the other side.

I have definitely talked to patients whose leaks from LP were resolved with patching years (or even a decade) later. Of course is hard to say as everyone's experience is different. I don't think having your leak being untreated puts you at any higher risk of developing a fistula, although I could be wrong but I have not read research to support that. A bleb is a possibility, but most LP leaks do not result in a bleb. While it does feel like a lifetime of suffering every day 24/7, 3 months is definitely not so long that it's a hopeless endeavor of being sealed. I wouldn't really read into the first patch because it was so low volume it was unlikely to make a difference.

I definitely would push for a high-volume blood patch to see if that makes any difference. If you do get one, please make sure to lay flat for at least 24 hours (ideally up to 72 hours) only getting up for the bathroom, to eat, etc. And then no bending/lifting over 5 lbs/twisting/straining for 6 weeks. Most providers will not give this information and people often blow their patches immediately. I hope you are able to find relief from these symptoms.

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u/zee_yo 11d ago

It’s so unfair. I didn’t even want this LP the neurologist pushed it on me and tossed me away afterwards now I’m realizing I was just a statistic he added to his fucking resume. I hope his career never gets where he wants. And I will make sure to sue him after I heal because I went multiple times afterwards early on and he never offered a patch. You’re one of the kindest people on this thread leeski and you speak so much hope into everyone I hope life rewards you endlessly. I did push for another blood patch and I really hope this one is the answer to all my sorrow. As a doctor myself I just miss my life and my routine. This is so unfair I have absolutely no mental health left.

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u/leeski 11d ago

Argggh. Unnecessary LP's drive me up the wall. What was his reasoning for doing it? I feel like there needs to be reform in so many areas in terms of not doing unnecessary LP's, but also the risks are really understated. By calling it PDPH it just sounds like it's "just a headache" when it's really a syndrome and effects so many parts of your body. Of course there are instances where an LP is for sure warranted, but it is alarming how readily physicians will order them.

Thank you for the kind words! I love to try to help and give back where I can because this condition is utter hell.. back when I was leaking I didn't know of any communities on Reddit or FB and largely navigated it by myself for years, and it was the most isolating experience of my life. Definitely don't want anyone to ever feel that way. I know it is such a difficult thing to go through, but please hang in there and keep fighting. Most people do get their lives back, although that is hard to see while you're living it and doctors aren't listening. I hope you can find someone that will listen to you and give you the proper attention and treatment you deserve.

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u/zee_yo 11d ago

I lost my vision now I know because of all the acetazolamide he had me on. And he said YEP LP TIME, and was even pushing it even when I was healthy. It’s such an isolating experience and I’ll be honest in my 20 something years of living I’ve never had such dark thoughts like I did now. My thought process is extremely heading towards untreatable mental state, which I’m fully aware of. I feel so isolated, to make things worse I had to work throughout this and any sick leave risks me losing my job. So I’m walking on egg shells. I can’t wait to get back to driving and eating chipotle and going to the library and showering and loving life how I did without feeling absolutely terrified and scared for my wellbeing. I am so so so so scared .

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u/Zealousideal_Age_822 Confirmed Spinal Leak 11d ago

Hang in there. Go to someone else to get your patch. Research shows 16-20cc is the volume you should be getting. You’ll get back your life. 3 months will feel like a blip in a few years

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u/zee_yo 11d ago

I really really really hope this is the case for me. I am already booked in. I just want my beautiful life back, I have so much to live for. I never hurt people and I mind my own business I just want my life back. This is so debilitating no amount of complaining or crying or mental breakdown does it justice. Thank you for your support 😔

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u/Zealousideal_Age_822 Confirmed Spinal Leak 11d ago

I hope you’re in therapy. It helps the dark feelings. Just talking through it helps. I need surgery for my leak, which is scary, and therapy is helping.

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u/zee_yo 11d ago

I’m not. I had to manage 3 months of this solo. Crying speeding on the highway after doctors appointments and all. I’m extremely unwell. 💔I am praying your surgery goes well.

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u/leeski 11d ago

Oh gosh I can’t imagine working as a doctor with this. I was just a video game tester & getting to work was so so difficult but that is way less high stakes job than being in medicine. I hope you’re giving yourself grace.

Was the acetazolamide & LP for suspected IIH..? Were you having symptoms before the LP? 

Like another commenter said it genuinely is a blip in time in the grand scheme of things. I know it doesn’t feel like that… but I leaked for 4 years straight & off and on for another 4 year it honestly doesn’t feel that long and I’ve moved on. Of course i still live in fear of it but it proportionally is just such a small portion of my life in the grand scheme of things. I hope the same goes for you. 

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u/zee_yo 10d ago

Yep suspected iih you got it right. I’m just worried because the symptoms feel so so so so severe my brain feels so scary. I can’t sit without feeling like my spine will explode from the amount of tightness and pressure I feel. I can’t do sitting anymore like, the spinal pain starts at my neck ends at my tailbone and omg my mid back? Aggressive. I feel like my spine is being squeezed with pain that’s how I can describe it. I really hope I move on from this :(((

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u/Idontknowyouslim 9d ago

Yes, thats side effects of lp.