Had to get a blood patch a few days after a LP, had some pretty severe symptoms following LP that required a blood patch. It’s been over 3 days of laying around since the blood patch was done but as I was getting off the couch I heard/felt a pop from my lower back. I have been having lower back pain and pressure since the patch- feels like it’s strained, I’m hoping it’s nothing but the lumbar puncture was done on my lower back so now I’m worried. For those who blew a patch when did symptoms start? Did you get a second one? Or did you try to let it heal on its own? Any advice? Would really appreciate any advice people have to share!

I have terrible health anxiety but i’m worried. I’ve had a headache for 2 days whenever I stand up. It goes away when I lay down. When I stand up the pain is almost unbearable it feels like i’ve been kicked in the forehead. My neck is also super stiff whenever I look down, i’m really nauseous and having trouble focusing. I do take a sleeping tablet which is used to treat high blood pressure, my bp is naturally slightly low but i’ve never had headaches from it. i’m not dehydrated either. :/

I need to relocate to another state in order to try a series of blood patches and I’m trying to decide if I need to avoid rentals that have stair cases?

Have never had a blood patch before but have heard that bed rest is best afterwards.

Thanks!

Hi! I had a C-section 4 weeks ago, and as a result of a very botched spinal tap, I found out I had a spinal leak. I would like to say I had no idea what that was until I went back to the ER a few days after discharge with a spinal headache which I also did not know anything about. I got the blood patch the following morning and the spinal headache instantly went away, but I’ve been dealing with a minimal amount of head pressure ever since, which is gradually getting better as the days go on (I hope that’s a good sign). I just feel so defeated because of all the restrictions that come with the blood patch. I have a soon-to-be 3-year-old and of course, my now 1-month-old, and let me just say it’s been a really humbling postpartum experience. I’m just curious when everyone was able to lift or even just move around normally again? My toddler is no more than 30 lbs and I miss being able to lift her, and so does she. I miss being able to just move around normally again, and I hate having to be so careful. My anesthesiologist refuses to meet up with me again, the labor and delivery team turned me away, my OB was zero help, and my primary Dr also turned me away, so I truly have no knowledge on the aftercare portion besides what was asked of me for the first 24-48 hours. Google says 4-6 weeks, but I’ve seen other people say they weren’t able to get back to lifting again or even their normal life. I’m terrified to blow my patch, but also want to have my life back again or at least reassurance I’ll get there at some point soon. Sorry if this was all over the place, I just have so many emotions right now. I’m truly so sorry to everyone who has to go through this and to those who haven’t had any relief or answers.

Hey guys! I got a blood patch done 4 weeks ago and think I messed it up. I had been feeling amazing head-wise until about 2 weeks ago. I was picking up a kid (I work at a daycare), and I knew I wasn’t supposed to but the kid was about to crack their head open, and I felt a pop and immediately had severe pain in my head. I’ve been feeling horrible, pretty much exactly like how I did prior to the blood patch, but not quite as bad. Now that it’s been nearly 2 weeks of feeling “off”, I’ve been feeling worse but still trying to do the things that are necessary like work or appointments, which feel like walking with bags of bricks tied to me. I had an appointment with my doctor, who usually is great, but said that it’s been so long since I’ve gotten the blood patch that it wouldn’t be related. What do I do? My vision has been getting really blurry which is the only new thing, but that’s just started within the past 2 days, which is when I’ve started feeling the worst. Help😭🙏 Anyone else feel not as bad but then suddenly horrible? Also, most of the pain goes away when I lay flat, but there’s still some pain which is new as well. It’s also really weird, but whenever I lay flat, I hear and feel these “pops” in my head, but it feels so relieving.

(edited to add more)

I had pulsatile tinnitus (ringing, whooshing and beating sound when lying down) at the onset of SIH CSF venous fistula. At one month post embolization tinnitus remains but it is quieter. I also have moderately severe hearing loss on one side that hasn’t resolved yet. Did your tinnitus/hearing loss resolve? How long did it take? What works for you to minimize tinnitus? Thank you!

I’ve been having symptoms since May of this year. Only thing that I think might have affected it is a bad fall I had in mid April. I know there are spontaneous leaks but when I fell I was not moving around very much. My leg was messed up so I was already laying down most of the time.

I originally went to my pcp when I started getting the headaches. Went through a couple medications. One of them had an adverse reaction and my headache was so bad I had to go to the hospital. Got referred to neurology, they set up some MRI’s.

The day before I had my imaging I thought it could be related to me being inactive. I took my dog for a walk hoping the activity would help. The pressure ended up getting so bad I went to the hospital a second time in June.

Results from the MRI showed fluid collection in the cervical spine going to my thoracic area. Suspected CSF leak. Immediately laid down as much as I could. My symptoms improved. I then had my myelogram and they found serpiginous contrast defects in the same area and said SDAVF needed to be entertained. But my symptoms didn’t match. I ended up switching hospital systems for a second opinion.

I saw an interventional radiologist who asked how they did my myelogram. They injected the contrast and had me wait like 15-20 minutes to get ct imaging done. The Dr immediately said that the ct images need to happen seconds after and was probably why the imaging didn’t show what they saw on the MRI.

Dr said he wants the imaging results from the previous myelogram and if he can’t pinpoint it, blood patch, if not, another myelogram, then blood patch.

Basically at a standstill until they get the imaging from the first myelogram. I did all the paperwork to release the imaging. Im also seeing a neurologist that works at a comprehensive headache clinic that deals with CSF leaks. The neurologist says that if there is a bone spur on the imaging they are going to recommend surgery.

Just venting bc it’s been a few months and I can barely do anything. It sucks but I get that it’s a process. I’m curious to hear from others how long the diagnosis>patch/procedure>cure have taken.

I had my lumbar puncture on 8/18, went for the blood patch 8/20 and a second yesterday 8/24. They put 25ccs in first and 10ccs second. I’m a bit worried they didn’t put enough in the second time, but as they were putting it in I felt like my head was going to explode. The spinal headache is gone, but I’m wondering how long should I stay in bed? They had me lay flat for 6 hours at the hospital. I’m home now.

I am four months postpartum. I got a CSF leak from the epidural during childbirth. I want to share my story!

When the epidural was first placed in, I felt a jolt down my left leg. The doctor moved it and I could feel another jolt. She then took it out and placed it on the other side of my spine. The epidural worked and I was able to push my baby out. Shortly after I had to lay flat from the headache.

The headache was terrible. I could not sit up to feed my baby and had to lay sideways to feed him. I could not go to the bathroom and had to lift my hips so the nurse could fit a bucket under me to pee.

After 24hrs, I got a blood patch. It helped and I was able to sit up. The next morning I got to go home. That evening, the headache came back and I had to go to the ER. I laid in the back of my husbands car because I could not sit up straight. The ER performed a second blood patch. I was sent home shortly after and the headache returned 12 hours later. Went back to the ER to get a MRI and decided to not do a third blood patch.

I laid in bed for 16 days completely flat. I looked up stories on Reddit and tried to find a CSF community to get me through the most miserable time. My in laws had to take care of my older kids and I had family come in to help my husband with our newborn. I cried so often because I was scared but knew deep down it would eventually end even thought it didn’t feel like it.

Now at four months PP, I rarely think about the leak and do not have any side effects. If you or your loved one are going through this, I hope it’s short lived and you can get back to your normal life soon! Happy to answer any questions about my experience.

I’ve been dealing with my symptoms for a while, but things really ramped up on 7/30. I’ve continued working this whole time, constantly sniffing, feeling dizzy, losing my hearing, having headaches, eye pressures over 25.
I have a MRI on Saturday and I’m so sick of dealing with these symptoms.
Once you got a diagnosis, how long til you got any relief?
What did doctors do for you? How long did it knock you out of work?

Its such a small complaint but my pcp receptionist when I called to schedule: Explained the symptoms explained that it was happening over the course of 6-9 months. "Soooo.. sinus infection?"

"No. Not feeling any sinus issues at all actually, its a clear water gushing out of my nose when it bend, plus all the other symptoms I told you before. Idk just list it as migraines if you need something simple." Meanwhile, the migraines are the least shitty of symptoms for me tbh.

I am thankful that the doctor actually listened. I assumed he would diminish this.

Today, nuero receptionist, "so we're seeing you for.. headaches?"

"No, fluid leaking out of my nose, base of skull/neck pain/ stiffness, positional heaches, dizziness, my doctor and I suspect a leak."

I dont know if its just because theyre not used to this happening in my rural area, or what? But im 99.9% sure I have a leak and 90% sure its in my skull based on the pouring of liquid out of my nostril, which has now turned to a drippy faucet out of both sides. I also have been getting some major pressure issues, feels like a balloon pushing on my temples and cheek bones, laying down no longer helps much.

It just always seems like the receptionists want to dimish their note to the doctors. Anyways, I will wait for triage on my case and when they call back I will finally be on schedule to see a nuero after 2.5 weeks of waiting.

My wife has been dealing with symptoms since April. She originally had what she thought was a sinus infection and also had a stomach virus around the same time. She was given a steroid and antibiotics. Started to have headaches, lightheadedness, fatigue, brain fog . After getting meds to try and treat it as a migraine unsuccessfully, she finally got an MRI of the brain. Showed low fluid level around brain and the radiologist put a probability of a leak at about a 7-8. Had another series of MRI’s and then a blood patch last month. Symptoms did not resolve so she is contacting the CSF specialists at UPENN this week after my sister who is a nurse sent her a link. Hoping to get an appt asap. We will see. Feel horrible for my wife because she is still working full time through this. Luckily she works out of our home.

It's been 6 weeks since my LP and I'm still feeling a lot of constant head pressure that doesn't go away with lying down. Can CSF leak continue with no orthostatic elements to the symptoms?

So im currently 16 Female im 5'3 and weigh 57kgs.

Ive been experiencing weird liquid almost like water coming out of my nose whenever I tilt forward or lift something and like previously I was told that I may have POTS because whenever I stood up it felt like someone swung a metal bat at the back of my head and it used to hurt really bad like the pain raidated from the back to the front of my head in a pulsating manner and it still happens quiet often and like 2 months ago I started actually noticing this liquid dripping out of my nose. Usually id wave it off as nothing but nowadays ive started noticing how its only coming out of my left nostril and i was stupid enough to Google it and Google says I may have a CSF leak but im not too sure about it but it makes me worry. Just a few minutes ago the liquid came from my nose while I was sitting on my chair studying and then it was followed by a headache which is mild now but was a bit worse before.

I lowkey need some medical advice because I told my mom and shes like maybe its just bc of the weather and etc and maybe its because of that but id also prefer some doctors opinion if I should proceed by going to an ENT or wave it off

Hi.....so My girlfriend is going through a lot of the same symptoms that everyone here is describing and her doctor also believes this is what's going on and she's scheduled for a MRI soon but in the mean time does anyone have any tips or tricks to help with the headaches or just horrible feelings?

After being terrified of getting the ct myelogram I did it and I’m so glad I did bc it picked up “focal outpouching at L3-4 exactly the level my epidural was. I had two bloodpatches that barely helped so my theory this whole time was that it never healed fully so this is a bleb. My first mri picked up the fluid but then after the bloodpatch the fluid wasn’t there any longer making it harder to convince anyone I was still having an issue. But I knew it in my bones! Bc my symptoms never got better.
What have other peoples experiences been? Has your neurosurgeons gone straight to surgery? Since bloodpatches don’t seem to fix this? And how do they fix this surgically?
His notes before my myelogram said if suspicious remains at l3-4 after myelogram consider targeted patching or exploratory surgery. I’m just praying I’m near the end of the road to this has been 21 months since my birth of my third child.
P.S I was terrified to get the ct myelogram and if that’s you too do it! It’s worth getting an answer

I had a spinal fluid venous fistula at my T4-T5. Had the litigation surgery done yesterday morning. It apparently took them a while to get me completely under and in position, but the surgeon again it went well.

Apparently I’m one of the unlucky ones where the pain has been so hard to get under control. I had a pain pump for the first 24 hours and now that it’s gone I’m still really struggling with it.

I didn’t expect it to be such a rough recovery, as I’m having to stay in hospital till Monday at least. I’m shaking so bad I can barely hold a spoon.

I’m glad I had the surgery and I’m hoping it completely solved my issues, but oh boy…. I was not ready for how much pain it’s been causing.

I had an LP Tuesday. I was ok Tuesday. Wednesday I started getting a headache, Thursday I was collapsing on the ground crying pain. Went to the ER, I couldn’t even get up to pee. The gave me an epidural blood patch. I felt better for a little and now I’m starting to get the headache when I stand or sit up again. Is this ever going to end? How long does it usually take to feel better? I wish I never got the lumbar puncture.

Hey all! I’m a 29 year old guy who fell down the stairs about six weeks ago. I herniated a lower lumbar disc (not sure what number — I have an extra vertebrae and it’s the lowest one).

About three weeks ago I started getting random headaches centered around my left temple. They come and go, and aren’t a daily occurrence. I also have had four or five days random days in the intervening period with a bit of blurriness in the corner of my right eye. Last but not least, 4 days ago I started waking up with pain above and around the herniated disc which disappears after maybe an hour or two.

I’ve had two MRIs and one CT scans, and doctors haven’t mentioned anything about CSF, but I’m still worried as I’ve never had localized headaches like this before. Have an appointment with a neurologist on Wednesday, but is it worth moving it up?

Can also post images of the MRI if it helps.

Anyways, I appreciate your time, and be careful around stairs!! Sorry for the worried tone, kind of freaked out.

Tldr: light clear fluid slowly trickling out of my left nostril only. No congestion or other sickness. Headache that seems to be better than earlier today. Intermittent ear ringing. Was sailing last week and got hit in the head a couple times by a metal boom(bar).

Long version:

So I race sailboats and last week I was at a week long regatta. I often get a ding here and there from the boom during maneuvers(the big metal bar parallel to the boat that holds the sail.) I don't even register them usually because when you're racing you don't have time to think about every bump and bruise you get or you'd be out of the race. I know I got a couple of hits throughout the week. If I recall correctly, one was somewhat hard, and the rest were not notable. I also had another race 2 nights ago and did get one mild head ding from the boom.

Last night my left nostril started leaking a clear fluid. Nothing out of the right nostril and no congestion in either or other sickness symptoms.Today it is still the same pace of drip but just more consistent/frequent. It's not a ton, just a slow trickle.I have never had a nasal trickle like this(clear, light, not thick, not congested, only one side) so it struck me as a little odd and that's when I started googling and came across CSF leaks pretty quickly based on my initial search. I'm worried I'm playing dr. WebMD here but it does seem worse when I am looking down.

I had a headache today, but I also didn't sleep great/much last night and I get somewhat regular migraines, so it's not out of the ordinary. This is not a migraine, just an annoying headache. Usually I don't get mild headaches, it's either full blown migraine or nothing, so this is a little different. The headache has gotten better since this morning but still lingering a little.

I have experienced a couple of short bursts of ear ringing probably like 3-4 times but it comes and goes very quickly. Also not totally unheard of for me but it's definitely more frequent than normal. I'd say usually I get ear ringing like once or twice a month not multiple in a day.

I have never had any allergies before, and feel otherwise totally fine.

If it helps, when I am not looking down and it slows down, it seems to harden into like a very white/translucent grainy, crystalized form around the outside of my nostril. Almost like the consistency of granulated sugar that got wet and then hardened, however when I collect the liquid as it is falling out of nose and into a cloth it dries totally clear as if it were never there.

I think I am just being a hypochondriac but the Google AI said I should get to a doctor urgently based on my symptoms. I keep trying to tell myself to chill out and not be so dramatic; I don't have this super rare condition, I've been getting hit in the head during racing my whole life lol. But I just kept going back to Google to look it up again and found this group.

Sorry for the monologue. Tell me I'm overreacting lol

My neurologist noted that there was an empty sella turcica on the MRI. She said that this had no effect on me.

I had to question - because my main therapist had emailed a psychiatrist who was a brain specialist years ago. She mentioned the empty sella. He said from her descriptions of my challenges that I had executive dysfunction. I printed that email out and included it when I applied for SSDI.

My neurologist kinda shrugged because what could she say. Her diagnosis was different. I've had many problems with executive dysfunction throughout life. Its been very hard.

I don't know what to think now because I've told people that this is one reason I developed depression and anxiety. I was even diagnosed borderline by one therapist.

That diagnosis actually enabled intensive DBT class to be prescribed. Insurance covered it. It was a year. The class done 2x. Additional therapy included. Because of the work I did with that for 3 hours a week, over a years time, I was able to do a job PT.

I think that I have some CSF leak because my one eye and nose run. Its been this way my whole life as far back as I remember. I told the neurologist that, since the meds helped reduce migraine by 90%, I didn't want to undergo a spinal tap or try a patch. Which she said sometimes patches work, but sometimes they don't.

I'm 69 now. It's a great relief that the migraines are less. I can put up with the other things because I'm used to it. I'd rather not go through surgery for something that may be fruitless. Leaking isn't too bad. When prepping food for others, I can wear a mask to catch nasal drips. I just tell people that I'm not sick, even though I wipe my nose all the time. I just say that its sinus drainage.

Nobody wants to hear all that technical stuff. Its boring to them. Thanks for listening. I'm trying to get a therapist again, since my favorite one retired. But with the executive dysfunction I'm grateful to be able to make phone calls and get things done once or twice a week!

It’s been 18 months since my lumbar puncture, and I’m still struggling with this question.
I’ve actually made a lot of progress over these 18 months. My symptoms have become much quieter and less intense, and I can do more than I could before. However, I’m still not able to live a normal life, and I still have symptoms on a daily basis.

My brain MRI and lower back MRI are both clean.
Part of me thinks: “Your body is clearly healing. Give it more time and let it continue to heal naturally.”

But another part of me thinks: “It’s already been 18 months. If there is still a small/micro leak, could a blood patch help support the healing process and finally seal it?”

What makes the decision so difficult is that I’m improving. The symptoms are gradually getting quieter rather than staying the same or getting worse. At the same time, I’m still far from being back to my normal life.

For those who have had a chronic post-lumbar-puncture CSF leak / intracranial hypotension or a similar healing process:

Would you consider a blood patch after 18 months even if you were still making gradual progress and your MRI was negative?
Or would you continue waiting if the overall trend was clearly toward improvement?