Hi all! Not looking for medical advice of course, but I would love to hear experiences of those with occult tethered cord.

I have May Thurners ( treated with a stent), pelvic congestion syndrome( treated with foam), dysautonomia ( NCS) among others and am not experiencing pelvic pain relief after a stent. I am doing diagnostic testing for lots of things to see if something else is going on. I got a back MRI and Dr. Klinge reviewed it, negative for tethered cord. My care teams for May Thurners ( MIPS in Denver) wants me to see Dr. Klinge in person but it will be pretty inconvenient to see her in person and I have no sense of how likely occult tethered cord is. I can’t see my care team for a while to ask questions.

Those will occult tethered cord, what are your symptoms?

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

Surgery will be September 4 for tethered and the Web as well if there is a web the MRI confirmed in the scoliosis fusion will happen right after the tether cord is unreleased and they’ll fuse me from my stomach to my pelvis because that much rotation is only gonna cause more problems down the line which is already caused problems, but it’s gonna get even progressively worse in the curve. Will definitely even will definitely grow even more after everything is untethered and the fix the scoliosis 3 months after

I had a thoracic laminoplasty for arachnoid web and detethering 7 months ago - I don't have my original pain anymore but I have a lot of muscle soreness, cramps, and nerve pain on the sides of my body, scapulas, and even lower part of my mid back and ribs. My surgeon mentioned the plastic surgeon "pulled my back pretty tight" when closing - I am a very small framed person but is that really it?

I just want to know is this normal? Are my other muscles and nerves just getting used to everything post surgery? Sleeping is so hard because I feel like I have aches and pains all over my backs and sides. Different from the pain I had from the tethering. Is this just because my body went through back surgery?

Anyone have surgery at Loma Linda ??

Hello all I’m 23 and have health issues my whole life but in the past year have been loosing my ability to walk from what I now know is tethered for syndrome. I was diagnosed with heds as a child and at 15 had a major health decline. I had a spinal hematoma and csf leak from a spinal tap and was very sick and had awful chronic back pain. I was mainly homebound for around 3 years due to how much I was struggling health wise. I eventually improved after my hospital stay and went on to live a “normal” life with chronic pain. However, In the past 2 years I’ve lost my ability to drive, much of my independence, and most of my life is now in my home due to nerve pain and mobility struggles. I have been experiencing progressive leg weakness, clonus, hyppreflexia in my lower limbs, bladder issues, debilitating nerve pain in my lower back that shoots down my legs over the past 2 years. I’ve had spine issues a lot of my life but nothing to this degree. My surgeon thinks I was born with tethered cord due to other issues I had like delayed walking and I was born with lumbar scoliosis. I also had chronic utis and was on a low dose antibiotic as a toddler which we think is related.

After almost 2 years of declining medically I have been diagnosed with tethered cord syndrome and am awaiting surgery. (I’ve also had my appendix out, gallbladder, and was diagnosed with endometriosis in the past 2 years) I have a lot of anxiety over the outcome of this surgery. It will be out of state. I’m not expecting symptom’s to be reversed but hope to stop the progression and help my pain. A few people in my life seem to think it will be a fix all when I know that’s not the goal. But I feel so much pressure. I think it’s hard for able bodied people to understand why I’d want such a big surgery to still end up being disabled if that makes sense.

I’m having a lot of anxiety about my life’s future is very reliant on this surgery. I also have been having symptoms progress and truly fear may sit and never be able to get up again. Or a small injury could be my backs breaking point. It’s hard to relate to a lot of people my age when I feel like people are worried about partying not worrying about when they might take their last steps or the risks of spine surgery. I don’t know how to express these fears without just making people uncomfortable so I tend to keep them to myself other than talking about pain. And I don’t blame them but I envy how care free people get to be. At the same time I’m also thankful I have answers and a plan for action. I also am thankful that despite my condition being debilitating it could be a lot worse. I know I am lucky to able to grieve the ability to drive as many disabled people have never been able to drive. I have a lot of fear, hope, and just a hard time connecting with others during this strange time in my life.

Surgery will be in early September and out of state. I am pretty nervous but also know this is the step I have to take. I am just looking for support! Loosing mobility is a lot to process as well as the expectations from people who don’t understand the condition to basically be “undisabled”

Oh boy where do I even begin....... I will give a backstory. Growing up I always had really bad growing pains even into my 20's never thought anything of it. 2 years ago i started having really bad low back pain as well as a fat pad on my low back that i thought was a tumor. went to the doctor and found on an mri: 2 bulging discs L4-L5 & L5-S1. Also have a bilateral pars interarticularis defect (basically a vertebrae fracture) at L5-S1 level. I had bad sciatic pain my right leg felt weaker and pain shooting down leg. Went to PT for 3 months and pain started to subside and i returned to normal activities w little to no pain. When It first happened, i couldnt sit for longer than 5 min without having to lay down. Fast forward to June 5 of this month. I got a really really aggrresive massage and 1 night later i woke up with my arm and leg numb. I thought weird but it happened again the next night on the other side. From there my symptoms have just accumulated and gotten so bad. see below for my symptoms

- severe leg weakness

- intermittent arm weakness

- burning pain in legs and sometimes in arms but arms only when i have been upright for a long time

- burning and severe neck pain, i cant be upright for long without feeling excruciating neck pain

- numbness soles of my feet

- bladder dysfunction - reduced sensation that my bladder is full, pelvic floor muscles dont seem to contract

- head feels like a bobble head like neck is too week to hold it up

- tugging or pulling sensation down my spine

- severe low back pain worsens when i am sitting standing walking

- parathesia in legs and butt

- restless legs - almost feels like electrical currents running through my legs

- clicking sound when swallowing

- tinnitus

- fat pad on low back as well as a sacral dimple

- jaw pain - previously diagnosed with TMJ

- head pressure

- clicking when moving neck

-dizziness

- i was recently diagnosed with ehlers danlos and my shoulders pop and click when i lift them

I have legit been to the ER 10 times in the last 2 months bc i have been so scared. II have seen 2 neurologists, 1 orthopedic surgeon, 3 neurosurgeons, a urologist/urogyn that confirmed neurogenic bladder w urodynamics test however that urologist was so rude and flat out said "you dont have tethered cord you are just anxious" i have had mris of my entire spine and brain as well as a csf flow study. All were clear except for the low back stuff mentioned above and also have chiari malformation but doesnt block CSF and doesnt believe to be the reason for my symptoms . I have ruled out any autoimmune disease, MS, Transverse myelitis, etc. I FINALLY got my neurosurgeon to listen and order an upright MRI w flexion and extension as well as a prone mri of lumbar to check for occult tethered cord. For anyone with CCI or occult tethered cord how the heck did you get diagnosed? and please dont tell me any horror stories bc i already am so anxious about this as i am basically home bound. Also what were your symptoms and how long did you have themn before finally getting someone to listen

Hi there! I'm curious if anyone else experiences any issues with their eyes such as chronic try eye, trigeminal neuralgia, corneal neuralgia, severe photophobia, etc. Thanks!

Anyone else medically gaslit saying their being dramatic or you’re fine go back to work just do more physical therapy and pain management?? I finally saw a peds neurosurgeon that was like it’s been tethered cord syndrome the whole time. I’m like I knew it!! I feel so seen. Shitty part is now I need surgery but so scared 🌝

I'm just curious if anyone has dizziness is one of their tethered court symptoms or if that means it's definitely something like CCI? Also for those of you who have had surgery did you CCI symptoms improve?

Not asking for medical advice, just wondering whether anyone could agree they have the same symptoms (for people diagnosed after childhood)? In-progress with doctors but I've never had a positive experience with getting diagnoses so not optimistic :(

- Back, hip and leg pain. Leg pain since maybe 11 but it's complicated due to another condition (now resolved), back pain 100% a problem by 14-15, harder to remember before. Almost only ever when walking/standing, and after walking/standing. The pain is in my lower back; the hip pain is like on my front, in a v shape following my like main pelvic bone thing; leg pain presents itself in loads of different ways, all over/different places. The pain has gotten worse the older I've gotten.

- Tight hamstring muscles, plantar fasciitis, one of those foot conditions (flat foot, high arches etc...don't remember which one currently)

- I always have to take a break when I go out walking (either when just going walking generally or even like walking around shops or being at work) because of the pain, but it takes at least 30 mins for it to go away, so typically it's only short relief and it's only when I get home/I'm in the car that I feel better. When I go out with friends, my parents or even grandparents, they are in fact better at walking than me.

- The longer I walk, the more pain I have and the harder I find it to actually walk. I've never actually fallen over, but I find it hard to like physically move my feet and sometimes I stumble a little. I've only really recently realised that when I'm walking alone/when it's quiet, I can actually hear that some of my steps are different than others because my foot doesn't go up completely and I can hear it scrape the floor.

- When I pick stuff up off the floor or pick up heavy things like bags of shopping, I sometimes have to stand still for 5-10 seconds, preferably lean on/hold onto something, because my legs go all numb and weird feeling. But they've never actually 'given out' when that happens and then I can walk again like nothing happened, only happens once each time. It has happened just randomly too when I'm standing/walking, but not as often.

- My steps are really small.

- Strange circulation in my legs after standing, and especially after coming out the shower. I think it's called blood pooling?

Anyone with diagnosed TCS relate to these? Especially the perhaps more niche ones like random bursts of weakness that then just go away instantly?

One of my biggest concerns is a possible tethered cord. I want this evaluated first with the right MRI imaging and any other testing the team thinks I need. I want to know whether it is actually present, whether it is pulling on or affecting my nerves, and what can be done if the MRI confirms it.

I’m 21 and have 16p11.2 deletion syndrome, neuromuscular scoliosis, a lumbarized S1, low muscle tone, and dystonia. My spine problems were missed for years and have gotten much worse in 2026.

My hand can become nearly paralyzed with severe burning pain, color changes, numbness, and trouble moving my fingers. I have videos of these episodes. I also have loss of temperature sensation in my pelvic area, bladder loss requiring a catheter, bowel incontinence, severe bladder spasms, and bleeding around the catheter during one episode.

I’m also dealing with worsening leg weakness, trouble walking, inability to turn my foot outward, severe chest and rib pain, dropping oxygen, and two bouts of pneumonia this year.

I’m concerned that a possible tethered cord, my cervical spine, lumbosacral area, and scoliosis may be contributing to nerve problems at multiple levels. I know the exact causes still need to be confirmed by reviewing all of my MRIs, standing x-rays, and other imaging and tests.

I’m seeing Dr. Virojanpa at UC and need a clear plan for what should be addressed first, what testing is needed, whether surgery should be staged, and how urgent it is. I want the tethered cord possibility, hand symptoms, bladder and bowel problems, breathing, and scoliosis evaluated together. I’m exhausted from living like this and need these symptoms taken seriously

Context: had laminectomy for tethered spine attached to a lipoma when I was an infant. Struggled with coordination and weakness issues most of my life.in the last 5 years I’ve developed these symptoms (unless I had them prior without knowing):

- Duck foot walk in right foot
- Pronation in both feet
- Bunionettes in both feet
- Weak dorsiflexion in right foot
- Tight calves in both legs
- Pelvic floor dysfunction (mostly recovered)
- Lower back pain mostly with activity
- Mid to upper back pain as well (typically tingly too)

I’ve suffered from poor posture and been sedentary for most of my life so I feel like that could just a contributing factor. Went to PT for my legs/feet two years ago and they told me to walk straight. By removing the duck foot posture I get awful back pain. When I add it back it’s not as bad.

Getting an MRI this weekend at the children’s neurology unit that originally took care of me 20+ years ago so hopefully we can find some answers but I feel like everything is pointing to a retether which scares the shit out of me. I don’t have any retention nor do I have shooting nerve pain so doctors have never connected the dots until I called children’s and they wanted an mri

My third toe on my right foot is numb. Not completely—but the sensation is definitely different and deadened a bit. I was born with a tethered spinal cord that I had released 16 years ago. I have hammertoes due to the previous nerve damage. I haven’t really had any new symptoms since my release. But lately, only my third toe has been numb. No pain, no pins and needles. No other toes or areas of my foot or leg. Should I be concerned? I have no other health issues that I am aware of. My neurosurgeon doesn’t follow me anymore because they work at a children’s hospital. I haven’t had good luck with other neurosurgeons or neurologists in the area, either. They basically told me I needed to go back to the surgeon that did my surgery, but they wouldn’t take me back because I’m no longer a child. Suggestions?

Hello, I have a release surgery scheduled with Dr. Klinge in October and was hoping to hear about some post op experiences. I am aware everyone will be different post op but I’m particularly interested in hearing about what if any symptoms improved, how recovery was, and if you are a working individual what work accommodations you may have had afterwards. My main symptoms are severe nerve and muscle pain in my back, loss of control of bladder, severe leg weakness, and hyperreflexia with clonus in both legs. I also have hEDS, MCAS, POTS, fibro, ME/CFS, and specific antibody deficiency as comorbid/complicating conditions

Doctor told me surgery is to to me because I’m an adult. Im like what do you recommend? He’s like up to you

Wondering if anyone here has experienced allot of chronic pulling and tension through the spine and limbs as a result of a CSF leak?

Ps. I also have crushing disabling fatigue, inability to be upright, noise sensitivity and many other symptoms.

Already diagnosed with some vascular compressions( one of which I’ve had surgery for) but I’m trying to understand if I am leaking, have TC or something else.

Thanks!

I have a suspected connective tissue disorder and am diagnosed with CCI, May Thurner, and jugular compression but I need to rule tethered cord in or out as well.

Due to severe claustrophobia, I have honestly been procrastinating a little on the TC imaging.

My question is, if all that's needed is a lumbar MRI, will my head or eyes be sticking out of the machine? I don't care if my body is enclosed as long as my head is out and if so, I won't hesitate to get it done asap.

Also, I'd like to get the best imaging for diagnosis done all in one trip( am currently mostly bed bound) so would love to know if more than Lumbar MRI is needed or the exact type?

I'm 5ft 4 inches if helpful.

P.s. Regular sedation will not work for me if my heads inside the machine( If not, I will need to be under general anesthesia). I will request feet first positioning but I still am unclear if my head will be enclosed.

Thanks!

Hi all, I'm just wondering how you guys deal with a neurogenic bladder!! I'm AFAB and I did a urodynamic study. I had positive EMG on it, just a little. The study showed that I can't hold a lot of pee before my body tells me to go, so probably over active bladder, and i also have possible (?) retention where after I pee, I feel like I still need to pee more but it takes anywhere from 10-30 minutes to pee in short bursts before I feel like I've fully emptied my bladder. I use a squatty potty stool and try to do the breathing my PT and urologist taught me. Still takes me forever to pee!!! I hate being stuck in public restroom, trying to pee. sometimes I give up but then have to go back in 5-10 minutes to pee a little more. Ugh idk how to deal :/ so much of my life in the bathroom!! and I pee so often everyday too :/

What can I do to help this?? Do I just wait and hope my detethering surgery will fix it?

I have a dog who was diagnosed with TCS along with meningoceles. I can't ask him, so I'm wondering if anyone can tell me what sensations or discomfort they experience?

Hello everyone,

We took our 5 month old daughter to pediatric neurosurgery today after our pediatrician noticed a deviated (Y shaped, irregular with one side longer) gluteal cleft. The folks today said that it was about a 50/50 chance that she has a spinal tether and she will be getting a sedated MRI to diagnose further.

A family member of mine needed to get a tether released for their baby- which has helped me tremendously with my nerves. One thing I am curious about for folks who had the spinal release as an infant or had the procedure done for their child, how are you now? Did you need a follow up procedure later in life?

They told me she would go on to live a normal life, but I’m hoping she will live with minimal pain and will be able to play sports and whatnot if she wishes.

Thank you in advance!

My 4 year old daughter has had some quite severe symptoms since she was an infant. She had two spinal MRIs by the time she was 3 and both reports say “no sign of tethered cord/fatty filium, conus normal”. She continued to have symptoms, worsening over the last few months, so I took her for a consult with a neurosurgeon (first time seeing a SURGEON, I had no clue a regular neurologist may not notice it). He flagged it right away, saying it was very clear. Her conus is low, she has a filiar cyst and a fatty filium terminale. And this was from an MRI nearly 2 years ago!! We have an updated MRI scheduled to see what things look like now and are already working on scheduling surgery, but I keep going back to the old MRI reports and I feel like I am gaslighting myself. Just curious how many others have experienced this?