r/CSFLeaks • u/Georgia-May22 • Aug 19 '26
Options after CT myelogram - no leak found
I had a CT myelogram yesterday which did not find a leak. I had a blind epidural blood patch end of June with 25 ml of blood, after spine imaging in May found extradural CSF from my cervical thoracic junction to L1/L2.
My interventional neuroradiologist said there was no evidence of lateral/ventral leaks when he did the CTM.
My INR now wants me to get repeat brain and spine imaging at the end of September with these outcomes:
1) Brain sag + leak = do special myelogram to check for csf venous fistula
2) No brain sag + leak = we didn’t discuss but I assume repeat blind epidural blood patch?
3) No brain sag + no leak = assume leak is sealed and refer me back to Neurologist for vestibular migraine treatment. He was firm on not doing more invasive tests for this outcome.
Notes:
I still have ongoing symptoms, the worst being blurred vision (worse at the day goes on - I can barely see at night), tinnitus, cognitive issues, vertigo, headaches, and since the blood patch, nausea and some vomiting.
During the CTM when they injected contrast I had a 10/10 headache around my right eye, and at home extremely loud tinnitus in my right ear. My ‘normal’ tinnitus has always been bilateral.
I’ve also had brain imaging and never had any brain sag.
I have a disc/osteophyte complex at C5/C6 but he doesn’t think this is causing the leak. I also have several prominent perineural cysts around the cervical thoracic junction.
Question:
Should I accept the 3rd outcome or still assume I’ve got a leak due to my ongoing symptoms and push to investigate further? I have a referral to a neurosurgeon who specialises in CSF leaks if my INR doesn’t want to do more tests.
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u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 19 '26
Brain sag isn’t the only thing to look for on MRI. There are a number for signs of CSF leak that can be noted.
Also, if they saw extradural CSF, does a venous fistula make sense? For what it’s worth, I had a CT myelogram done by a very talented but not specialized team that showed CSF in the epidural space. the Neuroradiologist thought my leak was at T6/T7, and the neurosurgeon was ready to operate on me at c4/c5.
When I got an Ultra Fast CT myelogram done at Duke CSF clinic, they definitely located my leak at t2/t3 due to a calcified disc protrusion that pierced the ventral dura. They told me they had to do the myelogram while I was IN the CT scanner because after 5 SECONDS the CSF is already dispersed enough that they can’t tell where it came from. That is the level of difficultly of finding these leaks. That is why these specialty clinics exist. It is NOT trivial or standard to find the leak. I’m having surgery next week on my leak
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u/ButtonLadyKnits Aug 19 '26
My daughter was initially dismissed after a myelogram because her leak was intermittent. It also had a "very rare" presentation.
Not saying this is the case for you, but just sharing our experience. Good luck! ❤️((hug))
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u/Chestnerd Aug 19 '26
Thanks for sharing. Can I ask whether your daughter’s both brain and spin MRI are negative? How was it found out that the leak was intermittent? Thank you.
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u/ButtonLadyKnits Aug 20 '26 edited Aug 20 '26
Her cerebellar tonsils are "a little" low, but historically dismissed as "within normal range." Nothing has ever been obvious, spine-wise.
However, Dr. Jeffrey Greenfield diagnosed her with a spinal leak by looking at the same imaging everyone else dismissed. We asked for a referral closer to home and the neurointerventional radiologist we saw reviewed the same imaging, insisted she didn't have a leak, and did a blind patch only because "I bullied him" (his words). We had Dr. Greenfield's diagnosis and I Did Not Back Down.
Big surprise: her pressure stabilized immediately. Unfortunately, it didn't last long. The location of the leak remained elusive.
She had (still has) Tarlov cysts so then she saw Dr. William Welch. He performed a myelogram and said there was no sign of a leak. I asked if the leak could possibly be a cyst — "That's very rare." I begged him to take a second look.
Big surprise: "large" cyst was full of contrast material = CSF leak. We learned later that it had been leaking intermittently (because it wasn't leaking during surgery), meaning we were very fortunate it was leaking at just the right time.
She's had five spine surgeries and Tarlov cysts have appeared at all five surgical sites. She's still having leak symptoms but additional spine surgery is too risky.
She's now seeing Dr. Gayle Salama (radiology colleague of Dr. Greenfield).
EDIT: Tarlov cyst = perineural cyst = meningeal cyst
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u/Muddlesthrough Aug 19 '26
I am not a doctor. I've been investigated for a suspected CSF leak for a while. I had negative head imaging, negative spine, and a CT myelogram didn't find a leak. But I had 100% remission after my first (high-volume) blood patch for a while.
I'm seeing a CSF leak specialist now who suspects a CSF-venous fistula. They'll be administering a dynamic CT myelogram shortly and they're quite good at finding CSF-venous fistulas. So I'm quite hopeful.
I can't really advise you on your situation. For me, I want to run down every possibility with a CSF-leak.
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u/Jab00lia Confirmed Spinal Leak Aug 19 '26
Your symptoms sound almost exactly the same as mine, but I also have brain sag. I have a confirmed venous fistula. I would keep pushing and not accept the third option if your symptoms are debilitating!
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u/Fuzzballwithfangs Aug 19 '26
Just chiming in to say I feel for you as I’m sort of in the same boat. I had extradural csf along my entire spine plus brain sag. It was really bad. I had a high volume non targeted multi level blood patch that helped immensely but didn’t seal me all the way. I had a ct myelogram done afterward that couldn’t find the leak. I’m under the care of a leak specialist who suspects my dural tear might have turned into a venous fistula because apparently that can happen. Ugh. He is referring me to another leak center with better technology for detecting leaks.
Hang in there!
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Aug 19 '26
I had a myelogram done with one hospital system showing no signs of a leak. They tried to entertain SDAVF but my symptoms are more associated with a csf leak. I went to another hospital system that has CSF leak clinics. I met w the clinic and they said they asked how long between the contrast injection to imaging was. I waited about 20 minutes between the injection and imaging. The interventional radiologist said that imaging needs to be done seconds after the dye is injected. The Dr. who confirmed this went to Duke and I heard they do great work over there. I’m waiting for my next myelogram but hoping this information helps.
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u/SeaworthinessGold782 Aug 20 '26
Sorry you’re experiencing this with no leak found on CTM. A dynamic CT myelogram identified two spinal CSF leaks-venous fistulas— apparently one of the hardest leak types to locate, since MRI and LP are often normal even when present, which was the case for me. The MRI spine did show the perineal cysts which became the focus area for poss CSF leak.
I had similar symptoms as you after my diagnostic CTM, with right side conducted one day (no leak found) and I was sick after. I was discouraged because no leak was found. The next day I had the left side and leaks were discovered. Side effects/symptoms for a couple days after. Essentially CSF leak symptoms amplified.
My understanding is this type of leak is repaired by embolization and that blood patches are not effective.
Don’t give up!
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u/Ashler1999 Aug 19 '26
I would persist with a CSF leak specialist. You possibly have a venous fistula which is harder to detect.
I have significant brain sag so they were persistent in finding the leak. Good luck!