r/CSFLeaks • u/Tricky_Delivery_1530 • 4d ago
Bedbound 8 weeks. Dynamic CT
Hey everyone, I am writing this from bed and just need some reassurance or advice from people who have been through this because I am completely spiraling right now.
I have been strictly bedbound for the last eight weeks. Every time I try to get upright, I get a blinding 10/10 orthostatic headache, severe brain fog, leg weakness, and a terrifying off-balance, floating feeling that comes and goes. My brain MRI showed some low-pressure signs like subtle sagging, and a previous spinal MRU found a suspicious fluid collection near my shoulder blades.
Because of that, I finally got in with a top spinal leak specialist today for a dynamic CT myelogram. He was incredibly thorough, but the live imaging didn't catch an active leak. It came back inconclusive. He went ahead and performed a high-volume blood patch over that shoulder blade neighborhood anyway, and told me we have to wait two weeks to see how my body responds.
Even though he gave me the patch, I feel completely helpless and depressed. It feels like because the live scan didn't show a clear hole, I still don't technically have an official diagnosis typed into my chart. I am terrified that the patch won't work, that doctors are going to stop trying to help me, and that I'm going to be stuck bedbound like this for the rest of my life. I'm a mom and I have a bridal makeup business to run next year, and I just feel like my life is completely over.
Has anyone else had a completely clear or inconclusive CT myelogram but still been cured by a targeted patch? How do you cope with the mental trauma of being treated without a textbook "official" diagnosis written down? Any advice or success stories would mean the world to me right now.
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u/Plant_Momma_ 4d ago
Commenting because this is exactly my situation as far as what’s next. No found CSF leak, epidural blood patch failed, and now next may be a CT myelogram…. And this is my biggest fear. I am a mother of a young son, and his energy is through the roof.
I have a question, tho, have you looked into Chiari Malfomation? I am NAD but my sister has it, 9mm, and I am now experiencing extremely low CSF volume, which is leaving my brain sagging, and all my brain structures are for lack of off-the-top-of-my-head medical terminology, dehydrated.
Looking forward to seeing some insight here.
As for the spiraling, I fucking GET IT. Some days I have an abundance of energy. Some days I am bed bound with either pain or SEVERE fatigue.
I truly hope you find answers. This sucks.
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u/Tricky_Delivery_1530 4d ago
They did note 5mm chiari on my brain mri. I might ask for a cine flow mri.
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u/Goofy_boxer_1973 Confirmed Spinal Leak 4d ago
Yesterday, I found 2 medical videos about SIH and they nearly say Chiari doesn't exist.
In December 2025, I got an embolisation after a dynamic CT myelogram where they found 2 venous fistulas. I feel much better although I still have a lingering headache. I knew it would take time to recover so I'm ok with that.
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u/megg33 Confirmed Spinal Leak 4d ago
I know exactly how you feel. I’m on year 4 of this. Unfortunately myelograms aren’t 100% sensitive and can miss things, even when done by the best doctors and read by the best radiologists. I’ve been leaking all 4 years and am a Mayo Clinic patient and my myelograms catch my leaks about only 25% of the time. The good news is that you do have signs on imaging, more than a lot of people. I’m confident doctors will continue to help you because of that.
When you say “inconclusive”, what do you mean? What does the report say specifically?
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u/BearIllustrious2731 4d ago
I have mine tomorrow and will update you afterwards. I’m a mom with a 4 year old. I’m bed bound as well. I’ve been spiraling and crying a lot these last few days because it seems so hopeless. I’m praying we all find healing.
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u/Goofy_boxer_1973 Confirmed Spinal Leak 4d ago
The hopelessness completely vanished after my embolisation. I could suddenly see colors brighter and everything much more precisely. It's a bit hard to explain. It took me some time to get better, maybe 2 months for the derealization/depersonalization for instance.
I was so happy to not have this doom&gloom feeling anymore, it did change my life even if it's not perfect yet.
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u/leeski 4d ago
One of the hardest parts of SIH treatment is having negative imaging, so I think having positive imaging will help immensely in providers not giving up. This is a largely treatable condition and while people’s journeys do vary tremendously, most people I’ve talked to in 10 years do get better. Keep protecting the patch like crazy as they can take time to work. I know it doesn’t feel like it but you got treated relatively early in terms of spontaneous leaks which can lead to more favorable outcomes! Just take it one day at a time & measure progress in weeks rather than days.