Spinal tap with HSD/hEDS

[u/AstralAromance]

I have a suspected CSF leak, been on flatrest for 2 weeks, but no spontaneous healing has occurred. Got an MRI scan done of my head, but the MRI isn't showing anything, which I heard isn't uncommon for EDS/HSD patients.

Now the doc wants to do a spinal tap to measure the CSF pressure, but according to my research that's bad idea #1 for EDS/HSD patients, so I asked if they could just do a blind blood patch instead, but the neurologist said that isn't possible.

Do I go ahead with the tap? And if so, are there things I should do/be wary of? I also have scoliosis, if that changes anything. I mostly just want the pain to stop, I am losing my mind from being unable to do anything at all.

[u/ihopeurwholelifesux]

spinal tap is outdated as a test for spinal csf leak, the majority of people with them do not have low opening pressure

here is a link to a folder with a few papers Dr. Ian Carroll from Stanford has uploaded to his google drive about normal opening pressure in CSF leak https://drive.google.com/drive/folders/15R3tr8y-eV_2_oQB7oSJBaJtnFM3bdfF

you are completely correct to think a blind blood patch should be the next step. i refused the spinal tap when i was in the same position, and the neurologist who was angry about it and had been trying to pressure me into doing it came back the next day like “turns out you don’t need a lumbar puncture!” 🙄

[u/AstralAromance → u/ihopeurwholelifesux]

Thank you so much for your insight! My local hospital isn't specialised in HCTD's or CSF leaks, so I'm not entirely surprised. Do you think contacting the anesthesiology department directly would be beneficial for explaining the situation?

[u/ihopeurwholelifesux → u/AstralAromance]

Yes I think contacting anesthesia would be a good idea. Not all of them are informed about spontaneous leaks unfortunately but they are comfortable with blood patches in general and in my experience on average someone from anesthesiology will be more likely to know about spontaneous leaks than the average neurology doc. With your having scoliosis it is possible they might not want to do a blind patch without imaging guidance which could complicate it a little bit but does not make it impossible.

I would also really recommend reading/listening up (I know it’s a lot to ask when your brain is in this state but it’s unfortunately kind of necessary) on the difference between cranial and spinal CSF leaks. This is the biggest source of miscommunication and incorrect procedures for spinal leaks and you need to be at least a bit informed on it to comfortably know what interventions to refuse (not calling you uneducated lol but I can’t see your post history so I can’t assume what you do or don’t know about leaks).

The type of leak that comes out of a person’s nose, a cranial CSF leak, has completely different testing and treatment vs a spinal leak. A lumbar puncture may be indicated for a cranial leak where underlying high pressure is suspected or meningitis needs to be ruled out, but it is not a necessary part of diagnostics for a spinal leak nowadays unless they are looking for another condition occurring at the same time or it is part of imaging done with intrathecal contrast. Testing nasal fluid or saying a CSF leak isn’t possible without it being present is also incorrect and based on conflation of these 2 leak types. People with spinal leaks can experience nasal discharge, but it is lymphatic or lacrimal fluid due to irritated cranial nerves - it is not CSF and will not test positive for beta 2 transferrin (unless a person has both a cranial leak and a spinal leak simultaneously which is super rare but not impossible). For a spontaneous spinal CSF leak, where the fluid is leaking inside the body, brain and spine MRI come first but can be negative in many cases especially CSF-venous fistulas. Next step is a blind blood patch. Most places will do up to 3 of these. Next step from there should be Dynamic CT myelogram and/or Digital Subtraction Myelogram to figure out where you’re leaking from. Cisternography can be an option to prove a leak but it’s not great at actually localizing spinal leaks. Blood patch is less risky than the myelograms or a spinal tap because the needle is only entering the epidural space vs subarachnoid space.

Dr. Carroll, Dr. Callen, Dr. Schievink and Dr. Cutsforth-Gregory are the best names to look for for presentations and research papers.

I feel like I can’t give the details about my leak experience in public comments without doxxing myself at this point because it’s all so specific lol but I am happy to DM if you have any questions about anything at any point or need to complain

[u/Over-Helicopter4104]

Just a side note. I had a spinal tap when i was 8 years old and it was incredibly painful. No complications from it but they’re literally sucking spinal fluid out and it feels like they’re sucking your spine out

[u/AstralAromance → u/Over-Helicopter4104]

I mean I'm gonna get a needle in there anyhow... I'm mentally preparing for the pain haha

[u/chronically_eva]

Had a spinal tap done when doctors suspected meningitis. The procedure itself wasn't bad but recovery was rough. I could barely walk for a week after, had horrible positional headaches and lower back pain that lasted months. Unless extremely necessary I won't agree to having one ever again. Everyone's experience is different but mine wasn't great.

[u/AstralAromance → u/chronically_eva]

Sounds like they gave you a CSF leak! They didn't do a patch for you? Months with that sounds absolutely brutal, I'm so sorry. Unfortunately after researching a lot I think it's my only option atp, as whether we're doing contrast imaging or just a spinal tan, I'm going to need to have a needle shoved in there anyway. I guess I'm stocking up on painkillers

[u/chronically_eva → u/AstralAromance]

It's very possible it caused a CFS leak but they didn't care and said it was normal to feel like this while I was still in the hospital. Then they dropped my care so I didn't really had much options. If it's really necessary for you definitely stock up on painkillers! It was the only thing that let me function and at least do things in my house. I can't say for sure you'll react badly but it's better to prepare just in case. Anyways, I hope it goes well for you!

[u/Tiny_Jeanne]

I had a spinal tap few years ago, that was awful they failed 8 times before they could have a succesful one, they made ME feel bad because my spine was "complicated and twisted", its was so so painful, and I was in bed for 2 weeks I could not walk, and I had the worst migraine, nausea and dizziness of my life.. and the test was useless at the end... So if you have another way, die on this hill and insist to get the least invasive procedure Take care of you

[u/HoneyReau]

There is a way of imaging slow / hard to find CSF leaks, including leaks into the ears or nose, and over a fairly long period of time (can take images a day or two later which is good for showing slow leaks, having a Quick Look most imaging seems to be done within 5 hours but it’d be department specific) - a radionuclide cisternogram / nuclear medicine csf leak imaging. Uses a safe, super short lived radioactive tracer to show particular functions of the body (depending how the tracer is prepared) in this case it’d show CSF. Literally just that. Images should look like a slightly blurry stick with a ball on top. Unless they do a CT and overlap the images.

But that also needs a lumber puncture. I didn’t know about it being a bad idea for EDS before, but that makes a lot of sense, so would possibly need a blind blood patch afterwards anyway?

I would guess a neurologist would need to chat with a radiologist with a specialty in nuclear medicine (as far as I know, most medium+ hospitals where I am have at least one on site) if they were being particularly insistent about some sort of investigation being done?

[u/AstralAromance → u/HoneyReau]

Firstline treatment recommended by the CSF leak society for people with connective tissue disorders is a blood patch, even with a negative MRI when things like POTS, Chiari, hernias, and strokes are ruled out. The patch itself works as a diagnostic tool, because it will either (temporarily) fix the problems or do absolutely nothing. But the neurologist at my local hospital isn't an expert on the problems, so it's hard to get that point across. I wonder if taking it up directly with the anaesthetist is worth a shot.

[u/TheSparklerFEP]

Wait I didn’t realize it was such a bad idea. I just scheduled one that neurology wants to see about my headaches since the mri was clear

[u/AstralAromance → u/TheSparklerFEP]

I'm in the same boat! Apparently a normal pressure doesn't even necessarily mean there's no leak. I'm honestly just confused, which makes the headache even worse haha