Is it possible to have no headache with an iatrogenic puncture leak but only have positional muffled hearing, clogging, crackling, pressure, popping, rumbling and tinnitus after a needle puncture? Ent says ears are normal, multiple mri's are normal. Ear symptoms started within days of epidural injection. Blood patch 6 months later did not help ears.
Hey everyone, I am looking for some insight from fellow Chiari warriors. I am currently dealing with a severe cluster of symptoms and am trying to figure out if my Chiari could be the primary culprit.
I have been dealing with debilitating symptoms for the last two months, including severe positional/upright head pain, constant brain fog, vertigo, balance issues when walking, and noticeable leg weakness. I was recently checked for a spinal CSF leak with a thorough dynamic CT myelogram, but they didn’t find a physical hole or active leak on the live imaging.
I know that Chiari Malformation means the cerebellar tonsils sit lower than normal, and I've read that this can physically crowd the foreman magnum. My questions for this group are:
Can Chiari mess up or block the normal flow of cerebrospinal fluid (CSF)?
Can that disruption in fluid dynamics directly cause severe vertigo, off-balance coordination, and leg weakness?
Has anyone else had an inconclusive or negative CSF leak workup, only to find out that their downward brain sagging/positional symptoms were driven entirely by their Chiari?
I am trying to map out my next steps and figure out what other imaging or specialized testing I should look into. Any advice, personal experiences, or guidance would be greatly appreciated!
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.
obviously not seeking direct healthcare advice, just curious about anecdotal experience!
background: I have hEDS and CCI. i’ve had four acute leak events in the last five years, where I had about six weeks of aggressive CSF leak symptoms (intense postural headache, neurological symptoms, nausea, fluid in my face, etc.). these events all came after some kind of travel/period of stress, so i pared back my life majorly and haven’t had another obvious, debilitating leak since march of 2025, but it’s come at a major cost to my capacity and function.
i finally found a doctor willing to image and treat me. we agree that i’ve had leaks in the past, and the question now is if my remaining symptoms are the result of a small, continuous leak or if they’re all a result of CCI. i didn’t have any visible leaks show up on my full spinal or brain with contrast MRIs. the next step is CT with contrast, but the doctor and i have concerns about causing a secondary leak via puncture during the e contrast injection, since my hEDS-affected tissue seems predisposed to it.
she‘s offered a high volume blood patch in my lumbar spine (done with radiology guidance to minimize the chance of a dura puncture) in lieu of more diagnostic imaging. the idea being if i see an improvement, we’ll know i had a small leak and it’s been patched, and if i don‘t, i can attribute my symptoms to CCI.
** my current baseline, constant symptoms, for context: nausea, brain fog, inability to tolerate more than two or three hours upright a day and never all at once, issues with balance and dizziness, intense fatigue, and no improvement in my capacity no matter what i do, a handful of neurological changes that feel alarming, and crazy tinnitus. the biggest difference between now and any period where i feel confident i had a CSF leak is the lack of postural headache.
I am desperate for any improvement, and definitely willing to try the high volume blood patch if it makes sense. i haven’t found anything that suggests it could aggravate my CCI or majorly risk other negative side effects other than the risk of hypertension, which she said could be addressed easily with medication.
I wanted to see if anyone had any relevant caution or insight. i’ve had experience in the past with doctors not offering all the information i need to make good healthcare decisions, and i’m nervous i might unknowingly make something worse. TIA!!!
After blood patch my ear s are cloogged and full of pressure
14 months have passed and still the same
I can be upright all day and Before the patch had my ears perfect
Have tried diamox, sudafed, pregabalin, nasal steroids, steroid tabs, bethasthine
Nothing works
Any similar case?
Ent sees nothing it is really horrible to live with this pressure and this sensation
Want to pop them but cant
They also make noises all the time
Many thanks