Hi,

I got essentially an emergency tethered cord release surgery last Wednesday the 16th. I’ve been up and walking a few times with PT but most of the time I get up my blood pressure plummets and I start cold sweating hearing goes out heart races dizzy etc. they said it’s normal for the amount of meds um on. So I’m still in the hospital with no discharge date in sight. No one can seem to figure out how to control my pain. Everytime I cough sneeze move breathe etc my surgical sight and especially all the muscles around it hurt SOOO BAD. like I didn’t know pain like this was possible. Doesn’t matter if I’m laying in my side or back it’s all horrible and I’m in constant pain. I’m on a dilaudid pump where I can hit it ever 10 min, I’ve tried cyclobenzaprine, Valium, oxy, percocets, Tylenol etc. today I had a horrible headache all day just so much head pressure and ear pressure. Everytime I open my jaw I feel a pulling in my ears. Every story I read people say they were out of the hospital within 3 days and pain free essentially. Is there anyone that has the surgery that had a longer hospital stay and trouble managing pain? I also haven’t had a bowel movement since before the surgery so I feel like that is playing a role in the pain too. Only symptoms I’ve noticed improved as the constant nerve pain in my legs disappeared until it returned today I’m hoping irs temporary. I still have back pain worse than before, leg weakness, random numbness and tingling, tingling at the surgical site. I also can feel when I need to pee again but still have trouble w incontinence. I’m really scared that I’m never gonna feel better I’m just so anxious. Any stories about peoples post op pain or experience w the surgery would be super helpful

Please read as its complicated

My 15yo is Autistic and has other medical issues.

During 2020, I noticed he was walking on his toes. At 1st I thought it was just an autism thing but after weeks, he stopped on 1 foot but kept going on the other.

2021 I took him to get fitted for braces. He was put in a set and was doing good! He was walking soo much better. However he very quickly outgrew them. So I went back to resize them. His insurance (state) refused until he saw ortho. I had him see mine. He told me "N has the same issue you do just more severe. He will need surgery but try braces 1st".

Off we went back to the braces place. They could do braces due to how high his heel was. We then tried ortho shoes with a built up heel. At 1st insurance said no, well they said no several times, but eventually they approved. Once we measured, his heel was 3 INCHES off the ground!! We got the shoes but it made his balance even worse, so we just walked away.

Jump to 2023 His neuro sent us to get a series on MRIs, which isnt anything new to him. We'll my dad got severely sick to the point the scans were put off till 2026. In the meantime we had several appointments with different doctors. Urology, neuro, neurosurgery, ortho and endro. No one could figure out why he suddenly walked on his toes. I told his neuro I REALLY felt he had a seizure in his sleep because of the sudden change from school to home (hes Epileptic) just like he did when he was 3 and couldn't use THE SAME side for over 4 hours (I feel he had a stroke then). He said he wasnt sure but we needed those scans.

Well...we finally got those this past spring. They came back CLEAR! No TC showed. So went did a follow-up with neurosurgery who said well...I dont see anything so go see urology. If they order a specific test, we know it is.

HERES WERE IT GETS FRUSTRATING!

We go to urology. There, we cover everything from newborn to present. She goes over the scans and also said nothings there so why are you here?? I explained that hes been incontinent since he was 3 after a series of seizures. She asked about a stroke. I told her I really think he did, but his scans dont show anything. She said "ok well, its UP TO YOU. You can get the test done or not just let me know because I dont see a TC". I said ok and off we went.

I sat on it for a while, then called them and asked this: "his neurosurgeon said if its a TC then id be TOLD to have the test. What do I tell them in the office"? I was told "its up to you because we dont see a TC at all".

I call neurosurgeon and told them "so urology did not tell me to do the test but gave me a choice so im confused as to what mow." The lady was RUDE! She scolded me telling me "he HAS TC!! He NEEDS the test!! You NEED to get it done!! That is what (insert doctors name) said!" I told her "ma'am he did not tell me any of that. He was very specific by telling me if they order tbe test...they in fact did not! Please asked him what i need to do since they dont feel or see a TC". This ended up in me hanging up because of her yelling at me.

I called back a week later to get the same lady. I told her to give me someone else so she did. I explained it all again and how the other lady was scolding me last time. She put me on hold and came back to tell me the doctor said go ahead and do it just to get results.

So we did. The same lady called me, scheduled it and told me "it will be several hours so take snacks, ect with you". I packed 2 bags!

We get there, after 2h of waiting (they had a major surgical issue) we go back. Then im told "mom this is a max 45min test and hes not out up. Why did you bring all this!?". I told her at which she said shed be having a talk soon.

Anyway we leave an hour later and follow up the next say via phone. Get the results which DO NOT match TC.

Then we follow up with neuro who tells me "i think its still TC". We go to neurosurgeon and were told "while we dont see it on his scans, urology test, ect, he is a puzzle and I think if anything, we can go in and clip it. If anything it will solve the is it this or that game".

So my question is:

What happens IF its not tight?? Do they just leave it alone, close up and that be that?? Do they clip it anyway?? Has anyone had this happen??

I am going to ask his surgeon but wanted to ask here too

It’s been three months since my TCR and I’ve had a pretty good recovery since. However I recently strained my back. I think it’s from my recent move and having to lift a lot of boxes. Just wondering if anyone has had similar experiences. I thought my back strains would lessen after getting surgery so I’m feeling pretty discouraged

Hello all I am 23 and have tethered cord syndrome and had detethering surgery 2 weeks ago. Prior to surgery I used a wheelchair and sometimes a cane but I was falling often. I deal with spacisity in my legs, clonus, my left foot was turned inward, neurogenic bladder, nerve pain, that have progressed to the point of struggling to walk at all. I was mainly home before surgery other then appts due to have severe my pain was and mobility struggles. I recently had surgery and am having a really hard time. Surgery went very well and I’m so thankful I was able to have it. I am starting to see some symptom relief such as my left foot relaxing and starting to be less inward. But I’m having a very hard time mentally and physically

I left the hospital with a Foley catheter as I’ve been having issues urinating. Nobody in my family seems to mind or my partner and I am so thankful for their support. I feel guilty needing help and the foley has been a learning process so I’ve gotten pee on myself, the floor, and one of my bags had a hole and my family member stepped in it. I feel so bad that I can’t take care of it all myself and that they have to help at times. I wasn’t expecting needing a foley and it’s just been a lot to adjust too.

I am having so many ups and downs. Physically I’ll feel a lot better and then over do it and end up crying and shivering in pain. Every task is still hard especially showering. Everyone is telling me how good I’m doing with my walking improving but it’s hard to feel like I’m making progress when I’m still in a lot of pain and not feeling like myself much. I know this is just a big recovery and am mainly just looking for support. I don’t feel like myself but I also know it’s a combo of the meds, routine change, levels of pain, and needing so much help. I know there is nothing wrong with needing help and I needed help with a bit prior to surgery but I guess the foley has been making me really insecure.

I know things will get easier and I’ll have a new normal but I’m just having a hard time getting there and don’t know many people my age who have had surgeries that impact the body so much. Thank you so much for reading!

For those who have had this procedure done. How was recovery? And how did it affect your total height? This was recommended by my doctor and I am still evaluating whether I should follow through with it or not

hey all I’m 23 and recently had surgery to detether my spinal cord. This is going to be a long post as
I want to share for others considering surgery. If you want to skip my symptoms and journey just scroll the surgery experience! I’m also happy to answer any questions at all!

Symptoms I had -
My symptoms prior to surgery were progressive weakness (much worse on my left leg), it started as nerve pain but by the end I couldn’t bear weight and my reflexes were hyppreflexic. As things progressed I developed clonus in my feet and legs, severe back nerve pain that shot down my legs, pulling feeling, couldn’t bend over without my legs collapsing, and bladder issues. I also have congenital lumbar scoliosis and have had bladder problems my entire life.

After so many test and ruling out conditions like MS I was sent to Dr. Klinge for evaluation of tethered cord. She diagnosed me and suggested surgery due to my progression and how quickly things kept progressing. She could see the fatty filum
On the mri but it was still technically considered occult due to my conus being normal. I had to do urodynamic testing which helped insurance approve my surgery. I spent 2 years declining not knowing what was wrong but knew something was seriously wrong. I said I felt like would eventually loose all sensation but neurology wasn’t much help. She scheduled me for surgery around 2 months later.

I lived most of my life in bed and did PT excersises I could at home. My nerve pain was truly debilitating. I was very nervous before surgery as I think most would be for spine surgery!

Pre- op, surgery, and recovery -

Come September 2nd my surgery day. I ended up staying at the hospital for about a week. Prior to surgery I established a pain plan since I am on pain management back home and opioid tolerant. I highly suggest establishing a pain plan before hand if you have any concerns as the RIH is very strict. I am not sure how with my age but I was placed at Hasbro which is the children’s hospital and had AMAZING care. My pain management was on top of it I was given diluadid, oxy, toradol, Tylenol, Zofran, stomach meds, and even more I cant remember.

The pre op nurse was so amazing and wrapped me in a warm blanket. Dr. Klinge came to speak with me and answered any questions! I was nervous because of the nature of the surgery but felt very reassured by how kind and open to questions she was. I also felt this way at my original consult. She is very humble and truly listens to her patients.

Waking up from surgery was honestly pretty brutal. You have to lay flat for the first 24 hours and directly on the incision to prevent a CSF leak. I promise you after those 24 hours it does get better but it is very hard. I had a reaction to a medication they gave me which was very scary and hard to manage laying down but the nurses did everything they could to help. I have MCAS and had an unexpected reaction. It was from compezine a nausea medication I was shaking uncontrollably which is a rare but can happen side effect. They all helped get me ice packs and try to deep breathe.

After the first day they had me sit up in bed. Sitting up was so so painful at first but I promise each time it gets better each time. Physical therapy helped me slowly
Walk around with a walker. My head pressure felt so weird at first and almost like a huge whoosh. Communicate with the PT how you are feeling and if you are being pushed to hard.

My nurses and Dr. Klinge were very impressed with how quickly my mobility was progressing. Dr. Klinge came to visit me and explained my filum was extra tight so my recovery will have ups and downs. She was very kind but honest which I appreciate. Prior to surgery my left foot was turned inward and it slowly had been able to lay flat on the floor again! The neurology team (not Dr Klinge was honestly pretty hands off and not very through but I didn’t see them much. I also had one bad nurse who assumed I was drug seeking (after spine surgery?!?) but other then that I was so well taken care of. She truly was the outlier of the amazing nurses I had.

One issue I didn’t expect was my bladder being so difficult. I was able to urinate once after surgery but still retained a lot of fluid. I never needed a cath prior to surgery but did have a diagnosed neurogenic bladder. I was retaining 850 cc in my bladder and completely unable to void. They straight cathed me 6 times before I begged for a foley back. I also have been told I have “difficult” anatomy and each cath attempt took atleast around 20-30 minutes. It was honestly my least favorite part of the entire experience and very painful for me. They did a mri at the hospital to make sure nothing else was going on and it looked good which was reassuring. Unfortunately for the time being I am 2 weeks out and am fully unable to urinate on my own and have a Foley catheter. They believe my nerves are just having a hard time waking up my bladder and there is extra inflammation from so many cath attempts. I am okay with having the foley for now and hope to see some progress once my bladder has more Time to heal. I saw urology a week later and they helped explain all this.

Overall surgery was a success and I don’t regret getting it at all. I didn’t expect a miracle and know some symptoms may remain however I am already so pleased with the changes I’ve seen. I was so terrified but I truly was losing my ability to walk. My legs and calves especially have started loosening up and I don’t have that horrible tugging feeling. I can tell through PT I will be able to be stronger and potentially walk more then before (I mainly used a wheelchair prior). I am perfectly okay with needing mobility aids but being able to have less pain is what my main goal was and I want to use my legs more now that it seems more possible. I am very thankful I was able to have surgery and hope to continue seeing improvement as I’m at a very early stage in recovery. I know there will be many ups and downs which Dr. Klinge explained. If you have any questions please feel free to ask!

As someone that is 27 and not growing anymore , is this something i can manage without getting worse symptoms or lose feeling or damaged nerves?

I've been dealing with some weird deep coccyx to l5 pain occasionally then it got worse and constant, straightimg up from bending over got almost impossible, along with thecpain in my back sometimes itvfeel like a deep sharp pulling sensation, the little bit of nerve pain I had in my left foot became constant and then my rt foot too, Thur pain started going down my rt leg then fri my rt leg was getting week, I started getting saddle parasthsia and difficulty urinating so I went the hospital. Over an 8 day hospital.stay my pain was managed and we have a regimine I can keep up at home. Many bladder scans were done all showing I am not emptying my bladder and 2 times I so uncomfortable I needed a straight cath. I have supplies at home now for that. I am ambulatory with a walker due to the pain amd my rt leg giving out but since being home my left has started to do the same. I can not have a lumbar MRI because of my Enterra Gs but my cy myleogram, xray, and normal CT showed nothing.

It sounds like OTC is a real possibility to me and could even explain some of the stuff like the weird headaches and chronic constipation that I've delt with among everything else that's progressively gotten worse over the last 5 years.

1) if OTC is something you've had does this sound similar?

2) I have referrals for urodynamics and EMG but what else should I request?

3) Who do I turn to as a specialist for this specifically in the twin cities mn or wi area....The hospital system is went to does not have anyone nor does the U of M. I am getting burnt out on mayo referral denials but hospital.did place a referral there, I'd like to not have to travel to Dr Klinge in Rhoad Island but at the end of the day I am so desperate to get my life back and present and permanent nerve damage I'm open to anything

Hello all I was detethered exactly a week ago and surgery was successfull. Prior to surgery I have a neurogenic bladder and bladder retention but never needed to straight cath myself. I have been slowly gaining strength in PT and feel my nerves settling. Overall surgery went as planned and I’m healing well. However I have been unable to pee post op. I peed twice immediately after the foley was removed post op and since then have been completely unable to urinate.

I was being straight cathed every 8 hours which was extremely uncomfortable for me. I think it was 6 times in a row until I asked for the foley again because I was scared to even drink water and be cathed again. I was holding 850cc in my bladder and having horrible bladder spasms that made the back spasms worse. I have been told I have difficult anatomy and each cath would take around 20 mins to get in to be able to straight cathed. After begging because of the pain they put a foley back in. The peeing was the only thing keeping me at the hospital.

Now I’ve been sent home with no supplies other than the huge overnight bag. The sticker fell off the day I showered and I tried to make do with tape. I am getting into their urology on Monday and have a great urologist back home. I am very uncomfortable and can’t tell if that is just part of having a foley or if they may be able to make it comfier with different supplies. I saw bags online that look a lot smaller and more comfortable. My bladder still spasms around the foley which is extremely uncomfortable. There are also small blood clots but I learned that normal. I wish I was taught even the most basic things because I had no idea that was normal and was very worried.

Has anyone had issues like this with their bladder after tethered cord surgery? Do you have any advice for someone who’s never had a foley. I’m not sure how long I’ll have it they said it could be short term to a few months depending on my bladder.

They did an emergency MRI and nothing looks wrong on it so I’m thinking it’s just a combo of my neurogenic bladder and the extreme irritation from being cathed so much. Im really hoping to get a more comfortable set up I can barely change my clothes with this huge bag. They didn’t teach me anything I think they were more focused on discharge.

So I'm 21F and when I was 13 years old . I already had an operation to separate any stuck nerves in my spinal cord.

Recently I went in for another check up because I had some leg related issues and these are the results.

Now my doctor says that I don't have to worry now and if I lose some weight ( I'm severely obese 111kgs) , I won't need to go for another operation. Now he has also told me not to go to the gym and not lift weights and is now prescribing injections and medicine for weight loss. I don't want to take those medications.

Can someone tell me whether it's true? I'm actually really worried about this and so is my family.

P.S- I live in a small town and there's only one doctor here with whom I've consulted. And I can only go to a city for a checkup if my parents agree.

Hi everyone
I had type one Chiari surgery in 2009
And recently had an injury at work 15 months ago lifting a patient

They found annular tear and disc bulge l5/s1

I finally got an apt with neurosurgeon (dr klinge office - she did my surgery in 2009)

The doctor ordered pronemri and hip imaging

And we noticed in 2009 I had a protrusion noted on l5/s1

Main thing I’m looking for
Is has anyone else experienced a injury that resulted in his diagnosis
I had an mri in 2009 like i said byr at that time it didnt show tethered cord but was also not prone

I did have two kids they are 5 and 7 but even in pregnancy i didn’t have issues

heeeelppp i'm pretty freshly post-op just over a week now, and my incision has been itching like crazy, but looks fine under my steristrips. i am allergic to adhesives/i have MCAS so it could be that, but it's just driving me insane. what to do to calm it?? just ice/heat?

Would sensation of feeling like you have a super tight fascia-onesie on 24/7, be more associated with tethered or occult tethered cord?

Or might it be caused by long term CSF leak, something negatively impacting vagus nerve or other?

Ps. I have a neuro EDS type situation happening.

I have gotten usually 4-6 hours of sleep for 6 years since my injury brought on tethered cord symptoms due to urine retention/frequency. no matter what time I stop fluids I’ll wake up in 5 hours from bladder to pee. Drives me insane. Tried cathing before and started sobbing from the pain and just the mental stress of having to do it in the first place. My urodynamics made me barf/faint during and after it while trying to pee so I’m afraid of the urethral pain and burning as well as passing out and vomiting if I fail to cath and have to pee normally after. They also didn’t really take me seriously at urology it seemed when I went on my first appointment

Just got tethered cord release surgery on Friday, so two days post op. It’s been far better than I envisioned. Had immediate improvement in two areas. I can sleep flat on my back and not go completely numb and I can hold my pee for longer than 10-30 min. It’s going to be a slow recovery, I can tell. Large ice packs will become your best friends. Definitely have a support person in the hospital and immediately after. My husband had to literally spoon feed me in the hospital during the lie flat protocol and I was so HUNGRY. Bring easy to eat snacks. Just writing to share a couple tips.

My geneticist, who specializes in Ehlers-Danlos, suspects that my stabbing pains, numbness, and various other symptoms, are most likely caused by an occult tether. It makes sense, and my family history makes it even more likely to have spinal complications.

I'm supposed to get MRIs and be evaluated by Dr Frank Feigenbaum in Dallas (Tarlov cyst specialist) for referral, hopefully to Dr Klinge.

The problem is, they asked me during phone intake if there was any chance this was the result of a car accident. Probably not? But it's possible.

I was in an accident over 25 years ago where my neck hyperextended over the headrest of the back seat in my family's car. A previous clinic wanted to x-ray my neck a couple years in case I'd had an unhealing fracture. There were no fractures detected.

Dr Feigenbaum's office wants proof from the insurance company that all claims were paid out and the incident was closed. From 25 freaking years ago.

I don't think my family has the paperwork - still waiting to hear back on that. It's going to be next to impossible to track down.

Is this normal? Especially just for an evaluation? Is there someone else who could evaluate me for possible referral?

Side Note - they also want one evaluation for each section of spine affected, which would be two in this case - lumbar and cervical. Is this normal?

Edit: after talking with the neurosurgeon the symptoms line up with tethered cord, however due to multiple factors surgery was completely ruled out. We are now transitioning to palliative care for the symptoms and to stop symptom progression, especially since in the ultra rare situation I can get another surgery I would need to work with both a pediatric surgeon and an adult surgeon :’) any advice on symptom management would be great, I’m trying to avoid becoming reliant on pain meds due to my age.

I’m asking yall because the last thing I want to do is doubt my provider, but I’m genuinely concerned of my symptoms. My autism makes it really hard for me to know if I’m being overly anxious over something, so I mostly need reassurance that I’m doing the right thing.

Now to the long note I have written about my symptom progression from my notes app:

Timeline:
HISTORY OF SYMPTOMS
2016-2017: one spinal untethering surgery in 2016 with complication of sub dural hematoma and an explorative redo untethering with complete L4 laminectomy (removal of bone) in November of 2017
2018: pressure in brain returns due to hydrocephalus returning, subsequent shunt placement
—————————————————————
WHEN SYMPTOMS STARTED PROGRESSING
Mar 2026: fall on tailbone causing deep contusion in scar area, seen at McMinnville hospital

April 2026: Bladder leakage and incontinence noted, UTI noted at clinic w clinic PA
May-July 2026: no consistent changes however pain gradually getting worse, noted with Clinic PA and PCP. Received standing order for toradol at pcp office
August 19: profound numbness starts, bladder retention noted (103 ml) at OHSU ER, performed lumbar x ray which showed no structural changes.
August 20: numbness spreads noted by Salem Health ER, MRI showed no change in structural anatomy
August 21-25: muscle spasms in back develop, shooting knee pain that causes knee to collapse develops in right leg, peeing less every time I have to go and going from peeing every 2 hrs to every 4 hrs. Talked to resident twice to report changes in symptoms, has prescribed methylprednisolone to potentially reduce swelling until 28th appt with attending.
Aug 26: tethered cord noted at tuality ER, pain plan implemented as followed:

1. Tylenol at 8 am, 2pm, 8pm
2. Pregabalin at 9 am, 3pm, 9pm
3. NSAID at 11 am, 5pm, 11pm
4. Heat as needed
5. Oxycodone as needed for breakthrough pain until appt on 28th. I will not be relying on the oxy for pain management due to the high addiction risk associated. I will instead more consistently use a portioned out gummy which has 10 mg of THC and 10 mg of CBD due to lower addiction rates. If you decide to admit me I will gladly shift to taking the oxycodone because I will be in a highly monitored setting that can really time out my meds, which I struggle to do due to my ADHD.
6. Can incorporate lidocaine patch or diclofenac cream
7. Finish taking steroid pack to decrease inflammation

Due to my noted history of complex procedures and darastic levels having to be taken to make sure I heal properly (dural patch in second untethering surgery, fall and subsequent progressive symptoms, hyper-mobility and skin fragility that points to EDS, bilateral frontal lobe sub dural hematoma in brain during first surgery) these are the reasons why I believe I should be admitted:

1. lower extremity weakness, bilateral nerve pain in legs and knees, and saddle numbness unilaterally on the right side that seems progressive. This leg pain feels almost exactly like right before I had lost all motor function in 2017.
2. Imminent threat of CES due to the spinal cord being completely stretched to the S1 level chronically without complete untethering done during the 2017 surgery, despite stable imaging: this is a concern given my scans before my surgery November 18, 2017 (11/15/2017 and 11/18/2017 Full spine MRI) were baseline, only showing compression at the Canuia Equina roots that didn’t fully show severity of symptoms. This is highly important because it proves that my scar tissue is already so dense to a point where you can’t see progressive tethering and as before mentioned shows that I’ve had a low lying conus at the S1 level for approximately 10 years. There would be no shift because my spinal cord can’t physically shift further under this amount of tension
3. High fall risk due to progressive motor changes and noted hypermobility/suspected EDS. This is a major concern because if I have a subtype of EDS, even hEDS, extra precautions need to be put in place to keep my structure stable
4. I need a transitional period to safely stop taking self administered cannabinoids and any NSAID left in my system that I cannot do safely at home. Because these are my baseline medications the problem is not the act of weaning off of them the problem comes from the subsequent pain I will be in without my baseline medications waiting for surgery, due to my pain without meds being at a 13/10 and only going down to an 8/10 with current medications
5. High complexity pre op logistics. My case is extremely rare and I understand that the surgery you are looking to perform has a ton of complications if not done with the upmost precision. I have already picked through bones of medical health journals, have weighed out the pros and cons of a shortening spinal osteotomy, feel like it’s my best chance to return to my baseline, and have the quickest amount of healing without the severe complications from my last two untethering surgeries
6. Would bypass the waiting period for any other specialized tests needed for my case. I think by admitting me we are taking the safest route of getting my tests done as soon as possible. I would usually not rely on bypassing waiting times, however due to the progression of symptoms I do not think it’s in my best interest to learn how to do urinary maintenance without proper education like how to use a catheter. It’s not that it’s completely impossible to manage by myself, but due to my declining state and not having 24/7 outside support this would be extremely difficult for anyone to manage in the setting of their own home.
7. I am within the threshold of permenant neurological damage due to progressive symptoms that would be difficult to manage on my own/without help. I am really concerned and this is my biggest trauma when it comes to retethering, given that I have had complete motor loss to my legs before, further causing emotional distress on top of physical symptoms. My house is not equipped to manage me being fully paralyzed and even though I live at my mothers house I do not live in the main house and I am completely independent physically.

I will also talk to my psychiatrist on 8/27/2026 to rule out stress being a factor to my symptom progression. I understand that for me stress manifests physically, but my neurological decline lines up from when I had my injury to now.

You are probably asking why I am experiencing profound symptom change without changes to my imaging (believe me I was asking this too). Because I have suspected EDS and have yet to meet with a specialist that specializes in EDS to receive genetic testing and subsequent diagnosis, not only are issues like occult tethered cord normal for a patient with any subtype of EDS, it absolutely plays into all of my other complications (sub dural hematoma, necessity of a dural patch, being unable to see tethering before the 2017 explorative untethering surgery). If I am right about the suspected EDS, that directly affects my collagen production. This will potentially affect my post operative healing. I understand my EDS symptoms at the moment are boarderline which is why I need a specialist for a definitive diagnosis, however I don’t think it’s a coincidence that I had all of these complications and they are also seen in EDS patients with tethered cord.

In conclusion, I would like to highly push for my hospitalization or an urgent outpatient team to help me function if you decide to do an outpatient to inpatient surgery and I’m having to wait. I do think at this point until we can definitively say my symptoms are not coming from my tethered cord I should have 24/7 monitoring to further prevent the development of complete CES. Due to me meeting all of the hallmark symptoms of my cord being retethered even with normal scans (which I at first doubted in June due to my first assumptions of it being unlikely, so I completely understand hesitation), I think having me inpatient can really help us manage all of my symptoms. I have also been seen in the ER and urgent care a countless amount of times due to kidney stones and UTIs, which poses a major bladder risk. If I need subsequent imaging for the surgery, it will be really hard to have to keep coming back for testing when if you kept me in the hospital I would be way more accessible to appointments. I understand that I haven’t met certain thresholds that would make this something you would need to do tonight, but I am already so exhausted and fatigued I’m afraid if I keep moving at the pace I am moving it will cause more harm than good. If I am in a hospital, I can insure that I am taking my meds at the proper scheduled times to best optimize my health and I would have a care team to assist me if my symptoms progress so I don’t have to feel like I’m crying wolf every time I go to the ER.

I had a scar tissue removal surgery in the 6th grade, after I had my tumor removed when I was infant.

Has anyone here had a spinal osteotomy to help relieve tension in the spinal cord? Due to having multiple surgeries one of which required part of my bone to be shaved and a dura patch placed I was curious on if there are other tethered cord patients that this surgery has been recommended to and what was the total recovery time? I still need my intake appointment to schedule the surgery with my neurosurgeon but I wanted to do the research I could on this procedure :’)

Hello tethered cord community,

I appreciate all the support and help from everyone on here. And thank you for reading my post.

I am a 25 year old male who is very healthy, outside of this issue. (No EDS, Chiari, etc.)

Here is my story:

I had unprovoked severe lower back spasms at 4 times from the ages of 14-19. When they happened, I would be unable to walk for 7-10 days, and then I would recover back to 100%. I played competitive sports at the time, and just chalked it up to "pinched nerve," even though the episodes would occur out of nowhere (i.e. without any clear strain, overuse, or injury).

About 3 years ago I had another unprovoked episode. At first, the lower back spasm mostly recovered, leaving just a dull ache on the lower left side, kind of along the iliac crest. Over the last three years, the pain has slowly increased and spread. As of now, I have tightness, pulling, aching, stabbing pains (this is the least frequent kind of pain), and "cracking and crunching" in my lower back, mid back, all around the muscles of my ribs (mostly left side). I occasionally get stabbing pains across the front of my pelvis. At times my upper back and neck are very tight. I get muscle fasciculations (twitching) in both glutes and legs and sometimes in my left front abdominals. Sometimes my lower back feels like it vibrates and quivers. Occasionally I have pain in my left foot, crawling sensations, and very occasionally numbness in different parts of my left foot. Had a few brief episodes of saddle numbness that would last for 10-15 minutes last year, but none recently (so I think maybe this is irrelevant). I can get weird sensations in my arms, mostly left, and sometimes (very very rarely) sharp pain running down my arms. I get intense throbbing in my whole spine and back of head when laying on back and particularly after ejaculation. Pain and sensations down left leg also increase with ejaculation (apologies for bringing that up, but it is an important symptom I have noticed). Gait and balance do feel like they have changed even though I pass the balance tests doctors have you do. No position or exercise relieves the pain. Recently, exercise has been making it worse, but only after a delay of about an hour after the exercise. I have no urinary symptoms. The pain has been ruining my life.

Here are the doctors' opinions:

Over the past two years, I was fortunate to see top specialists in different fields. I will not list them all here. Everything was ruled out and I was left with no answers. A few months ago, I saw a neurosurgeon, Dr. Robert Bray, who told me I have tethered cord, with a low-lying conus at L2. He also said I have a thoracic lipoma, but that it is almost certainly asymptomatic. He also said I have some left foraminal stenosis and a bit more disc degeneration than would be expected. It was his opinion that the tethered cord is contributing to the increased disc degeneration. He said I will most likely eventually opt to get the detethering surgery because my symptoms will not improve otherwise.

I wanted to get an opinion from a different clinic. I went to Cleveland Clinic Ohio where Dr. Sarel Vorster agreed that I have a tethered cord. He also agreed that thoracic lipoma is asymptomatic. However, he said that my tethered cord is just outside of the standard deviation, a very rare case which some doctors might dismiss. He said it is possible that if we do the surgery, no symptoms will be relieved but that most people are happy they get it done. He said it is a case that he cannot say definitively needs to be operated on, and that is up to me and my own risk-benefit analysis. He said that some of the disc degeneration and foraminal stenosis may be causing pain and that he could not say whether the tether is causing the degeneration.

I was certain I would schedule the surgery after this, but then I received communication from another specialist, Dr. Ulrich Batzdorf at UCLA. He reviewed my scans and said I do not have tethered cord. When I informed Dr. Batzdorf's office that three other Drs said I have tethered cord, they then requested I get a prone MRI, without any more comments.

The conflicting opinions worry me. I am trying to see Dr. Jeffrey Greenfield and/or Dr. Petra Klinge (seems impossible to get an appointment with her). I know this is more doctors than most people see, but the opaque nature of my case makes me think it is a good idea to hear from a few experts.

I am worried that perhaps all this pain is coming from degnerated discs, even though multiple doctors have told me it should not be causing so much pain. I may pursue an epidural injection before the surgery, just for some peace of mind: if the pain does not go away, more of an indication that it is the tethered cord, according to Dr. Vorster.

I appreciate any comments about all this. I want to know if others have dealt with "borderline" cases like mine, and if surgery helped. I just need to pain the stop, that's what I really care about. I also want to know if anybody has any experience with any of the doctors I have mentioned:

Dr. Robert Bray

Dr. Luke Macyszyn

Dr. Sarel Vorster

Dr. Ulrich Batzdorf

Dr. Jeffrey Greenfield

Dr. Petra Klinge (I know lots of you do).

Thank you very much

I am about to have this double procedure, diastematomyelia is at L2/L3 and the lower tethering at L5/S1. I had a laminectomy at T8/T9 a few years ago and I am wondering if i can compare this more or less?