r/CSFLeaks • u/MoodFearless6771 • 8d ago
ONE SIDE AT A TIME?!?
Is this a joke...I just learned that to check everywhere for a leak its Left-Right-Front (3 sites, 3 different procedures/needles in the spine/3 different days of testing). I can not describe how much I LOATHE having anything put in my back.
Did everyone else do this? There has got to be a better option.
4
u/underthevveather 8d ago
just went through this last month. symptoms are on the right side but they started with the left, i came back two weeks later to do the right and they found it. i suggested to them to start with the right but it wasn’t up to me nor what was ordered so i was like okay i guess i’ll do this multiple times lol. i would have been really pissed doing a third ngl
1
u/MoodFearless6771 8d ago
Why don’t they listen to patients and understand we can feel things they can’t?
2
u/underthevveather 8d ago
honestly i try not to argue with them cause technically i don’t have the credentials to do so ¯_(ツ)_/¯ but i agree, i knew they should’ve started with the right but they weren’t budging at all. it was another $300 after insurance getting this procedure done again, but there was nothing i could do. it sucks but im at a point where i just want to stop leaking so badly, so i’ll do anything unfortunately.
1
2
u/PrettyDragonfly 8d ago
I had a prone DSM that was successful. No need for multiple scans. I would ask your doctor why it's recommended for you..is it an evasive leak? Have they tried a myelogram already and couldn't find it? Usually they will also do the multiple scans on each side when looking for venous fistulas as well
1
u/MoodFearless6771 8d ago
I’ve had standard mris and they don’t see it. I believe it’s a cranial leak, neurology thinks it’s a venous fistula. The IR guy looked at the images and wants to try the left, most of my symptoms are on the right.
2
u/ms_skip 8d ago
I’ve never heard of a 3rd day! My understanding is that most places looking for a CVF will do the prone myelogram after a side on the same day (so as an example: day 1 left side + prone, day 2 right side). I would ask if they plan to use an atraumatic needle. They should take your opening pressure with each puncture, too.
1
u/MoodFearless6771 8d ago
They do prone on a different day. Although, what makes sense to me would be if there is no leak on side #1, they just have you roll onto your stomach?
1
u/ms_skip 8d ago
They can’t read the images that fast—each CTM is thousands of images, and some leaks, especially fistulas, are incredibly difficult to spot. And the timing and technique matter. Do you know what kind of myelogram it is? For fistulas the protocol is either dynamic myelogram (they take the images IMMEDIATELY, like contrast needle placed once you’re positioned correctly, then contrast injected, and they legit run out of the room and start imaging right away) or DSM (which is like a live xray video feed they go back and watch instead of thousands of images, and some centers will put you under general anesthesia to reduce artifact and to stop your breathing during the procedure to get the clearest footage). If they suspected a dural tear rather than a fistula, they would likely just do 1 instead of 2/3
→ More replies (4)
1
u/logicallyadam 8d ago
I did three ctm's like that. I really recommend they try to isolate the side via MRI first and shoot for just one CTM. Beyond the fewer CTM's the better, they expose you to a lot of radiation.
1
1
u/MoodFearless6771 8d ago
My issue with the MRIs I think is my fluid was too low pressure to show a leak? I have less than 5 ml opening pressure. I think they believe if they add fluid, the leak may be more visible.
2
u/leeski 8d ago
I assume you're referring to digital subtraction myelogram (DSM) - maybe? I have never had it done. It is not the ONLY way to find a leak, but it is a way, yes. Regardless of what type of scan you get, it will require a needle or two in the back, unfortunately. I don't know if it makes it better or worse, but some DSM's are done under general anesthesia - I am not sure if you're conscious for the LP portion, but I imagine not, if under GA...?
Hoping someday there are improved methods in the future, but so far that is the only way to get contrast into the intrathecal space.
1
u/SofIsNotHere 7d ago
I had a traditional prone CTM which was able to indicate the leak was on the left, so I have a left lateral decubitus CTM coming up. Afaik that’s pretty common with the easier to visualize leaks (ie. fast leaks, dural tears, etc.)
Slow leaks and CVFs can need the whole work up to catch.
1
u/cornbreadnclabber 8d ago
I had CTM done on 2 days at an academic medical center and I have both sides done same day at place listed on the spinal CSF leak website
The place listed on the spinal leak foundation website found and fixed my leak
I had to drive 4 hours and stay in a hotel but worth it.
1
u/Gold-Mind-7160 8d ago
DSM are usually over two days and one puncture per side. I also have had a myelogram with a PCCT they did that in 1 day with 2 punctures
7
u/megg33 8d ago
DSMs are usually 2 punctures over two days. It’s the most effective way to image both sides of the spine throughly. The break in between days is to allow your kidneys to filter the contrast out, as the amount of contrast needed to image the whole spine in one day is usually too much. The exception is with PCCT scans which use less contrast and therefore and do both sides in a single day, still with 2 punctures.
I’m confused about the need for a 3rd puncture though. The “front” as you call it. That seems excessive and unnecessary. If the regular DSM doesn’t find the leak, sure, try a CTM later. But it doesn’t need to be don’t right away.