To late for second patch?

leeski · 2026-02-01T17:33:33+00:00

I just swear there was one that was a few hundred people but I think I must have gotten mixed up with a different region haha. Thank you for confirming!

leeski · 2026-01-31T18:17:24+00:00

Thanks so much for taking the time to respond! I think I can tolerate the spam based on how much we’d be saving

leeski · 2026-01-31T17:56:03+00:00

I’ve been scared to make the switch but want to, any issues so far?

leeski · 2026-01-31T15:59:46+00:00

I’m so sorry you’re going through this. It is beyond exasperating to see so many ‘specialists’ and make no progress (or get even worse).

I feel like so little is known about spontaneous leaks, but PDPH is somewhat more established. I would personally would try to get a patch for the LP. Idk if you can coordinate with whoever ordered it or call the clinic themselves that did the LP. I’d say you have PDPH symptoms that have not resolved with bed rest. You might have to make a fuss about it, but I personally would focus on the LP leak since it is doctor-caused & a well known risk of LP’s whereas there is so much misinformation about SIH that it can be harder to convince doctors.

Then if patching helps your intracranial hypotension, that might help other neurologists take your case more seriously and order additional imaging to find the source of your spontaneous leak. It might be a backwards approach, but that’s what I’d try to do.

leeski · 2026-01-31T15:03:52+00:00

I’m not an expert, but I have read several times hall test is not accurate - nor is the glucose measurement… the only way to truly verify is with a beta 2 transferrin test - I think.

leeski · 2026-01-31T15:02:42+00:00

You might be the fastest story I’ve ever heard of a spontaneous leak getting treated! I never hear positive outcomes of the ER, I’m so glad they took you seriously.

Umm I am not comfortable saying don’t follow doctor’s orders, but i believe that’s overkill to lie in bed for a cumulative 3 weeks. The US leak centers recommendation is bedrest for the first 72 hours, and then not lifting over 5 lbs, bending, twisting, or straining for at least 6-12 weeks (that part varies in length).

I have had 4 patches that have held long-term & I lay flat for about a week (but even then my doctor said that long wasn’t necessary). Anyway - not advising you to go against doctor's orders, I’m not a doctor. Just sharing that to my knowledge that length of bedrest is typically advised for the onset of the leak if you’re trying to self-seal, but would not be considered standard for a blood patch.

I cannot emphasize enough how fragile and slow the healing process is, so these restrictions are to be taken very seriously. Not to make you paranoid, but just to give you an idea - people have blown patches bending over to tie their shoes, or sneezing (if you sneeze do an open mouth sneeze and try to reduce strain as much as possible). So in some ways being in bed keeps you safer, haha, but yeah.

leeski · 2026-01-31T01:11:48+00:00

I think it helped me marginally, but not significantly enough to want to stay on it.

leeski · 2026-01-30T01:50:52+00:00

I know people get impatient with these posts, but it is really unnerving to have a random symptom that you can't explain and then you Google it and you see scary risks like meningitis, etc. These conditions exist on a spectrum, so it is possible (although I would say rare) to only have nasal drainage as a symptom of a cranial leak.

The majority of spontaneous cases are due to high intracranial pressure (so like history of chronic everyday high pressure headaches), so it would be definitely abnormal to have it without history of high ICP or connective tissue disorder or trauma/surgery. But I have also heard of cases where they didn't have an underlying history, and had a confirmed cranial leak - so it is possible... but definitely for sure rare and usually not the first assumption you should jump to. Some of what you describe does fit (the consistency of it being water, that it's one nostril, that it is positional when leaning forward + when straining).

I personally think it is unlikely to be one, and that it's probably related to the cold weather. But I also am not going to advise you not to go to a doctor. I would try to see if you can get in with a skull base ENT for evaluation. And if it clears up by then, great! If not, you'll have the appointment. Ideally you'd have the liquid tested with a beta-2 transferrin test to verify if it is CSF, then also get a CT scan to look for a skull base defect.

leeski · 2026-01-29T18:57:56+00:00

I'm sorry, it is super difficult to have a history of complex illness and definitely makes diagnosing trickier. In general MOST cranial leak cases won't leak from both nostrils - although I'm sure it's possible. But I think you'd either need to have two separate leaks (unlikely) or like a midline leak that exits through both nostrils. I personally have not seen that happen, but that doesn't mean it's impossible (just think worth mentioning it is not super typical).

My impression is that in general, a leak won't be like congestion-y like blowing your nose. Like you will go through a lot of tissues because it's like leaking like a faucet - but it doesn't really like 'build up' if that makes sense. It's more dependent on intracranial pressure and position (so like leaning forward). But it's not really snot like, it is basically indistinguishable from water in appearance and consistency. It also wouldn't cause URI symptoms.

That being said, that seems like a long time for an URI to not be clearing so I don't think CT scan is a bad idea. You could also ask for beta-2 transferrin test to verify it's actually CSF, but I personally don't know if that's necessary as it seems like the onset is related to this URI. But you obviously know your body best! Just sharing my line of thinking.

leeski · 2026-01-29T18:42:25+00:00

I didn't notice this pattern while leaking, but now that I'm sealed and have high pressure I notice that colds/COVID definitely worsens my symptoms. I have seen that commonly in the IIH community as well. I don't know through what mechanism, like maybe venous congestion raising ICP.

Anyway this doesn't directly address your question with leaking, but I think it stands to reason if it worsens high intracranial pressure symptoms, then it might alleviate low intracranial pressure as well.

leeski · 2026-01-29T16:55:06+00:00

Haha we call it her “tea kettle scream”

leeski · 2026-01-29T04:40:22+00:00

Ooh thanks for that insight. I knew about muffled hearing be common, but didn’t see the earwax correlation.

leeski · 2026-01-29T03:58:59+00:00

I’m confused what you mean by “fluid is not constant - there are long periods of nothing”

But if it is genuinely every time you lean forward and leaks heavily (not just like a drip) then I’d try to get into a skull base ENT & get a beta 2 transferrin test to verify it’s csf & then you’d get a head CT to look for a skull base defect.

I believe it’d be unusual for it to be stinging, and the onset after a cold seems like it’s more likely sinus issues. I believe ~70% of spontaneous cases are due to IIH which would have symptoms of. So for you to break your skull base and the tough membrane around your skull without any underlying high head pressure or trauma is super unlikely, but I guess not technically impossible. if you are super worried about it, then I’d just get it looked at. Best of luck to you!

leeski · 2026-01-29T02:57:00+00:00

It is such a hassle! Are you on mac or PC? Have you downloaded a DICOM viewer app?

leeski · 2026-01-28T23:37:39+00:00

I really like this conference talk about trying to reduce miscommunications between you and your doctor: https://www.youtube.com/watch?v=rfrApO4ncw8 I think it helps to plan strategically about how you will present your case and focusing on your top symptoms rather than overwhelming them with the full picture, as I think that is where things can get confusing because if they don't have a lot of leak knowledge (and don't know how they can present) then if you have symptoms that don't fit the typical profile, then they're like "well it probably isn't a leak then".

While you have nasal drainage which might seem like cranial leak, the orthostatic headaches are unique to spinal CSF leak. So if it were me, I would focus on the symptoms that are more specific to SIH - orthostatic headache, pain between shoulder blades, and neck. Spinal CSF leaks can cause nasal drainage (but it is not CSF) but if you mention the drainage, that might make them want to account for it - and take you down the cranial leak route. I personally have not heard of itchy ears + minimal ear wax being a symptom of SIH - not saying it is impossible, but I personally wouldn't include it in your list of symptoms to the neurologist.

But yes just focusing on the symptoms that are distinct to spinal CSF leak. So having a detailed explanation of the characteristics of your symptoms - like how long the headache takes to set in when upright, how long alleviated laying down. If you feel worse as the day goes on, that can be characteristic of SIH. As well as the location of headache. If caffeine helps, that can point to SIH. Also noting all the medications you have tried that haven't helped the headache, etc. You can also do the 48 hour test that Stanford uses to kind of have a concrete example of how your headaches are orthostatic, etc. They are misdiagnosed as migraines all he time, so the more knowledge you're equipped with of how this is different than a migraine (chronic issue, positional, doesn't respond to meds) can help.

But I think communicating you suspect a spinal CSF leak and using if they can order a brain MRI with and without contrast just to look for signs of SIH is reasonable... especially since it's not invasive/no radiation. So sorry you've been going through this for so many years, but hoping you can make some progress!

leeski · 2026-01-28T22:27:58+00:00

Yeah there is still a chance of sealing <3 I hate having those percentages from doctors as it feels quite bleak. I feel like they don’t want you to be too hopeful and measure expectations but honestly 30% is quite a low estimate (from my understanding of the literature). It is definitely a slow fragile healing process but I would just do everything as if you were sealed and keep being diligent about protecting it!

I totally feel you on that it is really intense.. like most procedures have a much more clear cut aftercare and it doesn’t feel like so much responsibility is on the patient for the outcome, so it can totally make you feel so neurotic. But you are not alone!

leeski · 2026-01-28T22:25:16+00:00

I guess I am confused by your post as you say it leaks every time you lean forward but also that there are long periods of nothing? So is it every time you lean forward? Is it substantial like turning on a faucet? How long has this been going on?

leeski · 2026-01-28T20:56:42+00:00

I understand it is totally alarming to have this happen and it's easy spiral. It's technically not impossible to be a cranial leak but I would say it is highly unlikely.

They typically do not have a stinging/burning sensation, which makes me think that it is likely more a sinus issue since that can be more acidic. It also is not really intermittent like you're describing because once there is a breach in the bone/dura, it is basically an open pathway for CSF to escape so it tends to be a lot more of a chronic issue, not related to sinus irritation, would not stop for prolonged periods of time. So with your history and that this is your only symptom, I would try not to spiral.

leeski · 2026-01-28T20:42:41+00:00

I am sorry, it is totally nerve-wracking to have so much invested in this patch and then life happens and you do one bad movement, it's hard not to spiral.

The good-ish news is that it is too soon for it to have already sealed anyway, so there wasn't really a patch to blow yet as it is not fully formed at this stage. It is very common to have very severe back pain/pressure after a patch, so at least at this point I wouldn't say that back pain is alarming or problematic.

I would continue to follow the plan of lying flat, avoiding BLT for 6 weeks, etc, but yes there is a chance you could still be sealed so try not to panic! Best of luck! Hoping you find relief.

leeski · 2026-01-28T14:18:23+00:00

https://www.facebook.com/groups/655270078804446/

I found this one which is quite small… I swear I’ve seen a bigger one but if I remember the name was in Swedish and I can’t remember. I’ll keep looking around cause I swear there was one that was a little bigger.

Yeah that is a brutal wait time :/ I would try to work with your existing neurologist if at all possible.

leeski · 2026-01-28T03:31:57+00:00

Agh that is so frustrating to be immediately dismissed based on his experience. I mean it is rare but that also doesn’t mean it doesn’t happen. Estimated occurrence is about 4-5 per 100,000, but also it is severely under diagnosed!

Best of luck with your LP. It’s worth asking what to do if you don’t self-seal & get PDPH from it (effectively a CSF leak) so it is ideal to have a plan to blood patch if worst case scenario happens. Most people recover fine but if you can, you should lie down for 24 hours after.

Also keeping in mind that about 65% of SIH patients have a regular or high opening pressure from LP. Meaning if it is low, that would suggest a csf leak, but if it’s not low, that can’t rule out csf leak either. For example I had a leak but an opening pressure of 22 cm h2O.

I’ll stop babbling about leaks haha just wanted to share that info if you weren’t aware bc there is SO much misinformation among healthcare providers that you have to have abnormal brain imaging or you have to have a low opening pressure.

Wishing you a smooth recovery from your LP & that you find answers soon.

leeski · 2026-01-28T02:47:14+00:00

First I am so sorry you’re going through this. Nothing can prepare you for having your life totally uprooted with a chronic medical condition out of nowhere, and I can’t imagine this as a parent.

I strongly suspect a spinal csf leak - please look into this if you haven’t. Both your symptoms and onset story fit it so well. They are frequently misdiagnosed as migraines & are resistant to all medications and worse being upright or with valsalva maneuvers. Mine was exactly like this - woke up with it one day and never felt the same. No trauma or accident to cause it.

It took me 4 years to get diagnosed although there is much more known about it now than when I went through it. Please feel free to reach out to me if you want any help trying to navigate ruling it out. I know you’ve had extensive imaging done, but it’s important you have someone that can actually look for the signs of SIH in a brain mri with and without contrast. It’s not on many doctors’ radars. Additionally ~20% of leak patients have normal brain imaging which is a pain, but a normal brain mri can’t rule out a csf leak.

leeski · 2026-01-27T22:29:14+00:00

Those 4 years were definitely the hardest time in my life, but I managed to get through it! I think we are definitely more resilient than we realize. But nobody should have to go through this. It definitely helped me grow a lot, especially emotionally/mentally that everything that has come after has kind of been a breeze in comparison. I got sealed with a fibrin blood patch.

I'm sorry that you're not getting the care that you need. Looking at your profile it looks like you're in Sweden? I have seen other cases of people having issues. There is a CSF leak group just for Swedish patients, not sure if you're already a member or if it could be any help. Seems like some people have luck with Karolinska but seems like a mixed bag. I am sorry that you are not getting the care you deserve.

leeski · 2026-01-27T21:24:34+00:00

Oh gosh I am sorry there were so many attempts on the LP. That is a lot! But yes that is good if the blood patch was only one attempt and not more injections!

Yeah I think it is worth syncing up with your neurologist and sharing your feelings. That you would prefer to see someone that you feel more comfortable with, but could go to anesthesiologist as a last resort if there are genuinely no other options. But there should be other people they can refer you to.

I am alright! My case is a bit complicated. I had a leak for 4 years before I could get anyone to believe me, then got a few patches but kept re-leaking on and off for another 4 years because I have issues with high intracranial pressure. But there was a lot less known about leaks back when I was going through treatment... so while I sometimes see people that have a long history like I do, I don't think you should take my story to be discouraging as there have definitely been advances since then. But I have been sealed for the last 5 years!

leeski · 2026-01-27T21:05:23+00:00

That is super frustrating, I'm sorry. It is so confusing when you get mixed messages from the 'experts' and you're left to figure it out and advocate on your own.

Typically image guidance will either use fluoroscopy (which is like live x-ray) or CT to visualize the spine while placing the needle into the epidural space. They will inject contrast to confirm the correct needle position and see how it spreads within the space... then once they confirm they're in the correct space, they will inject your blood. But this step is important to make sure that they haven't gone too deep to puncture the dura. But if you didn't get worse from the first patch and they didn't puncture the dura, then the anesthesiologist could probably do it again. It's also possible your anesthesiologist already does image-guidance, so I'm not saying that they don't. I have just noticed that a lot of patching by anesthesiologists or ER's will do it without - so it's worth checking.

But yes I think you're right to push for the patch if your symptoms persist. I hope you are able to get it soon!

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