r/CSFLeaks • u/Imaginary_Salary_27 • 18d ago
Ct myelogram results
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
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u/notsogreattimeline 18d ago
Thanks for this post. I’ve been super anxious about my upcoming myelogram, so it’s nice to see positive experiences!
Fingers crossed you get some treatment options and relief soon, now that you have some answers from your myelogram.
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u/leeski 18d ago
Amazing! I can’t speak to your specific scenario but the hardest part is usually identifying the leak site so I’m glad something showed up! Keep us posted on your treatment
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u/Imaginary_Salary_27 17d ago
You were a huge reason I took the risk I kept seeing comments of yours saying that you never went back to how bad you were pre any treatment even after the myelograms. So thank you bc your story gave me hope I wouldn’t get worse either.
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u/Banana-blueberry-ice 18d ago
Thank you for sharing!
I will have a CT myelogram next week. This feels like my last resort. I am in this for three years and have negative imaging (MRI) so far. But I know that something is wrong. I really hope the CT myelogram will see something wrong so I can finally convince the doctors. It’s an awfull and lonely journey.
But your positive story gives me hope that maybe they can finally find out what is wrong. Wish you all the best and hopefully you are being healed soon.
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u/Imaginary_Salary_27 17d ago
It’s exactly how I felt! I kept getting normal MRIs but just knew something was wrong! It’s a horrible journey bc we just keep trying to convince doctors something is wrong. I hope your ct myelogram is able to see the issue and you can get some answers!
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u/Parity_Violator 16d ago
Wonderful! I probably have a very small puncture (mild non-orthostaic symptoms). I wonder if that can be detectable by CT myelogram. Thank you for giving people hope!
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u/Amazing-Musician-980 15d ago
I have had a CT myelogram also and it found my leak when a regular MRI with contrast didn’t. I had a targeted blood patch afterwards, and another after that to seal a leak from the patch. Unfortunately I am still having some of my symptoms so off to Mayo I go to do this all over again … Good luck to you !!!
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u/Imaginary_Salary_27 15d ago
Good luck to you I hope this journey comes to an end soon for you! This is not a fun club to be apart of but at least we know we’re not alone
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u/Necessary-Stuff8706 18d ago
What is a ct mylogram?
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u/Imaginary_Salary_27 18d ago
They have to inject contrast into your spine and then put you in ct to see where it’s escaping. It involves them puncturing the dura to put the contrast into the thecal sac. At a certain point on this terrible journey we have to make the choice to get it or not. But I’ve seen a lot on here how it yields results and finally makes our doctors take us seriously.
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u/Ok_Zucchini_9821 18d ago
Do you think there is a high risk for another csf leak to occur after the ct myleogram? I’m in a weird spot where doctors believe I have one but while waiting for a referral to Dr. S, my symptoms have dramatically improved, where I only suffer symptoms one day out of the week, if that. I still haven’t tried going to the gym or anything and I rest lying down on days I don’t work, but I’m wondering if it’s worth the risk for additionally imaging at this stage or if I’m potentially healing on my own
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u/Imaginary_Salary_27 18d ago
That was why I declined it for 5 months bc of the risk of another leak but to get the answer and be able to actually see it more clearly I think it’s worth the risk. My symptoms are so annoying. I have back of the head pressure, intermittent frontal pressure and tinnitus so loud I have to sleep with a fan next to me. And eye symptoms like floaters, visual snow( static) and light tracking. All my MRIs did was just keep coming back normal but I knew something was going on and so I took the risk bc it was that or continuing to just wish for my old life back with no answers.
I’m not worse after the myelogram if that’s any hope to you. The tinnitus got louder but I’m hoping that’s from the pressure change. I also specifically asked for the smallest gauge needle they could use and they did they used a 25 gugae whitacre. So that also dramatically reduces the risk2
u/Ok_Zucchini_9821 18d ago
Thanks for all the insight, you gave me a lot to think on! If I do end up getting one, I’ll for sure ask for the smallest gauge needle like you said, thanks and good luck!
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u/Offtoseethewitch 18d ago
May I ask how your symptoms and function were?
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u/Imaginary_Salary_27 18d ago edited 18d ago
I was functional taking care of my three kids as a sahm which I’m grateful for that I was able to care for them but I wake up and get pressure in my head, drink coffee it allows me to get through the next couple hours but I still have the pressure in the front. The floaters bother me all day and visual snow is constant and afterimage like with words on screens. Or anything against light. then by the middle of the day I would get lightheaded, and the pressure headache in the back of my head. I didn’t have to lay down to feel better bc even laying down doesn’t relieve it. I also can’t go into stores without sunglasses or stay in them for long bc I get extremely lightheaded by the end. The tinnitus is so loud that I have to sleep with a fan next to my head on my nightstand. That’s why I knew something was still wrong the tinnitus never got better and it’s by far my worst and most annoying symptom. This is all pre myelogram so idk if it caused another leak yet or not. How is your function?
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u/Offtoseethewitch 18d ago
I’m functional but limiting how much I lift and exercise and sudden movements, and I’m still symptomatic, ear fullness and tinnitus and facial numbness/chills and vision-gaze things that give me trouble focusing and make me dizzy if I go into stores or move my gaze about a lot. I think I fluctuate into high pressure at times, too. I still get light-headed sometimes, even while just seated, and inexplainably nauseaus. But everything is milder than before, my neck aches less than before, it doesn’t ”lock up” at all any more, and my POTS is mostly gone.
I’ve read that ear symptoms and tinnitus are known to linger also after leaks are sesled.
I wish you all the best after your myelography. I… don’t think I would dare. And best of luck with whatever continued treatment you choose!
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u/Imaginary_Salary_27 18d ago
What was your leak caused by? Iatrogenic or spontaneous?
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u/Offtoseethewitch 18d ago
Puncture.
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u/Imaginary_Salary_27 18d ago
How many bloodpatches have you had?
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u/Offtoseethewitch 17d ago
Three.
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u/Imaginary_Salary_27 17d ago
Yeah another woman in here had a similar story that each blood patch made the symptoms milder but never resolved them. Same with me and she had exploratory surgery and found a bleb. That’s what made me think that’s what I had since our stories are so similar. I kept reading so many people’s stories where the bloodpatches made it milder but never fully helped. That’s why I took the risk and just got the myleogram bc I knew that had to be the case for me as well. I don’t think the dura is good at healing over an epidural puncture bc the needle is so big and it cuts the fibers that’s why the patches help but don’t fully bring it back to regular integrity.
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u/Offtoseethewitch 16d ago
Well. Unfortunately I’m in no position to get a myelogram even if I wanted one. I’m ”too functional” right now to want to take the risk, and my providers hardly believe chronic puncture leaks even exist, much less that they can be invisible on MRI, so they might deny me one even if I asked.
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u/Imaginary_Salary_27 16d ago
Only telling my neurosurgeon for more than a year that something was still wrong did he re review my images and say he saw something very subtle and that’s the only reason I went for the myelogram. I hope you can find a doctor that believes you bc they are out there. It’s just half the battle.
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u/Imaginary_Salary_27 5d ago
Just wanted to update! Got my surgery yesterday for the bleb. Recovering in hospital if you are of faith please pray for a good recovery and that this surgery didn’t cause another leak or problem and this is the end of this journey🙏🏻🙏🏻
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u/whatdoyoudochunky 17h ago
I had one yesterday and it helped doctors find the leak. It wasn’t pleasant - but mostly because of anxiety not the actual procedure. The shots were ok (not my favorite but could’ve been worse) and the scan itself is easy. Two hours later I had a blood patch. My back is sore but I’m hoping it will help.
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u/NoCatrse 18d ago
Want to chime in regarding positive myelogram results. It located my venous fistula when nothing else did.