u/injured_girl

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)

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)

I love Jenny and Sumit both! I think they're adorable and for whatever reason they obviously work as a couple! So trust me I do not ask this to be rude or call Jenny out on her slurred speech in a negative way, just genuine concern and care. Her speech seems slowed compared to before. Does anyone else think maybe she suffered something?

to settle down somw or all of your physiological and musculoskeletal and mental/ brainstem chiari symptoms? i swear my tolwrance must be going up unfortunatelt bc my usual dose is dping nothing lately for the past two weeks! not for my anxiety nd also not for my dystonia and muacle rigidity and spasticity it usuallyhelps very quickly

What does everyone here do or take for your severe pain related to tethered cord? It's becoming unbearable and I don't know how much longer I can take this and keep fighting to get out to my doctor appointments to get the help I need. I'm just suffering constantly

Hi everyone, thanks for reading. So the short of it is my left side has been paralyzed for six years now following an injury during a one time epidural steroid injection of Kenalog-40 into my left T2/L1 epidural space. Whatever happened during that injection apparently didn't show a spinal cord injury on any MRI imaging I had done and maybe also because the injury was caused by a doctor, maybe some sort of legal consequences came into play here and maybe that's why I was dismissed by so many doctors following this incident. For the record, I was already at the time in pain management and still going thru orthopedic surgeries from a bad car accident, where I also had a mild TBI and injury to my cervical spine.
I've been gaslit for six years and finally during an inpatient acute rehab rehabilitation stay postoperatively a month ago following a orthopedic reconstruction surgery of my entire pelvis, the PT's and OT's working with me daily hands-on were able to observe the flaccidity, spasticity, and overall dysfunction that was occurring in my body with any movement or whenever trying to hold my spine up against gravity. My first PT recommended I get a hands-on head to toe Asia examination done. This entire six years I had never even heard of this but I was already aware that I had lost my voluntary anal contraction reflex, from my own research and reading about what is happening to me. So when I was told by this PT that this Asia hands-on exam would test that reflex and then be able to document whether I still had it or not,I was obviously so excited that I would finally have documentation of a true objective finding that would help me get finally the proper help I needed!
That did not turn out to be the case however. The exam accurately does reflect where my lack of sensation begins on my left side and it shows zeros on my left and right side right at T 12 where that injection had occurred. But the PM and R doctor in this rehab facility refused to write a report or summary of the findings and then oddly enough I was told he was on vacation for the rest of my stay at that IRF. and as such I have not been able to get anyone any doctor to put any sort of request out there order or referral for me to get into a neurosurgeon ASAP to talk about decompression and stabilization surgery. I tried to bring this to the attention of the proper people at this IRF and suddenly it became only Administration people that were coming into my room to talk with me and the atmosphere became very hostile and they were practically scolding me and kept trying to get me off the topic of getting a doctor to discuss with me the findings from the Asia exam. They kept reiterating that my purpose for being there was postop of my pelvic reconstruction and not for a spinal cord injury and then I was even told ridiculous things like, "Even if you did have a spinal cord injury it wouldn't change what we would be doing for you in here therapy wise it wouldn't change your physical therapy." And "those Asia exam findings don't necessarily mean incomplete spinal cord injury, you could have cauda equina" to which I said OK and isn't that a surgical emergency that still itself needs to be addressed ASAP? And I was told no because I stated that these symptoms were not brand new.

Anyway this entire last month has been a terrible struggle trying to obtain a written report for my Asia exam because that's what my local neurologist told me I needed as did my primary care provider. The IRS doctor that had ordered my Asia exam they are telling me cannot or will not write the report at this time because I am no longer their patience. It's ridiculous because when I was still their patient is when I was asking for the report already literally right after the test was done and I was told that the doctor needed two business days to complete it But as I said above, it was never completed and he allegedly went on vacation and never returned before I was discharged. I do have cord compression at C4/C5 and C5/C6 showing on my MRI findings so in some way it makes sense that the PT examiner found that my lack of sensation begins up that high. But the weird/rare part, I guess, in my case, is that my left arm still works I just have a really unstable shoulder girdle but oh also my left leg still works as well even though it's very atrophied and most of the muscles don't work enough works that I am able to stand and walk short distances so where I noticed the paralysis the most is in my trunk and torso. My entire left side abdominal and hip and butt muscles are just hanging loose flaccid skin but from what I can tell, yeah, I guess it's not very normal to have lost so much Muscle bulk and tone and contraction ability in my trunk and core stabilize our muscles but still have movement in my left arm and leg

Maybe that's the reason the IRF decided to highlight on my discharge papers a new diagnosis of somatization disorder. I am just getting exhausted fighting the entire system it feels like because the more help I reach out to it feels like the more gaslit I become and with bogus diagnoses like somatization disorder Getting thrown at me just because I have knowledge of what certain exam findings mean and I am trying to press for urgent diagnosis and proper treatment, how am I supposed to get the help I should be getting to give myself the best chances at a more functional life and future?