r/CCIsupport

How many of you out there have tethered cord (occult or otherwise) as well as craniocervical instability and/or atlantoaxial instability? I've been diagnosed with all 3. Haven't had surgery yet because each neurosurgeon who has positively diagnosed me each has their own surgical agenda and they are all different. How do I know which to choose? I can't wait much longer bc my symptoms are so severe. I wish I could tell which symptoms r coming from cci or aai versus which symptoms are coming from the occult tethered cord. Does anyone have ANY insight on any particular symptom (or all of them I will take any advice!) being caused by one diagnosis or another? Like I'm fairly certain my progressive paralysis and foot deformities are coming from the occult tethered cord and I'm fairly certain my severe fatigue and abnormal sinus problems, for instance, are coming from the cci or aai. But which is the torso shortening and full body spasticity coming from? And is my fear and panic organic bc of what I'm dealing with and facing it is it being caused by the structural problems at my brainstem compressing specific nerves?

I would appreciate connecting with anyone who's any insight. or even just who can relate to this isolation alone feeling and fear. I feel like even the best doctors I've seen don't fully understand this stuff so all I can do is pray. And wait for someone to finally schedule a surgery but I'm also at a place where I need to make the call of what to do first between releasing my occult tethered cord or having a craniocervical fusion. In the meantime I'm also facing ACDF surgery lower down in my neck and my best plan as of now is to do that C5-C7 area first and hope for the best and then see what's up after that to decide on what needs to happen next. One neurosurgeon told me NOT to have the ccd surgery first bc it would put me in a bad way with acute severe symptoms from the tethered cord. Then the other neurosurgeon I saw blew that opinion off and wouldn't even discuss TC with me, putting in the medical notes that he plans to do C0-C2 fusion and "monitor TC symptoms". if TC really is the cause of my paralysis, feet deformities (I was
Not born with, they started about 6 years ago along with the rest of this after an accident), and lack of anal reflex that is also the qualified for having an incomplete spinal cord injury- then I feel like hat needs to be released first but the surgeon who told me it needs to be released first has since fallen back on communication and has ordered tons more testing on me that just seems invasive and I wonder if that surgeon is merely trying to get rid of me now or if he just needs reassurance that he is going after the right thing (my tethered cord is occult if I do have it. I didn't believe I did at first until I started educating myself by reading a lot online from ppl like you guys as well as medical pubs and abstracts learning more about the symptoms of OTC)

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!!!