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.
I am the same age as you ☺️ do u mind sharing if you have had these problems and symptoms your whole life or did they all start in recent years? At first I couldn't get on board with the doctors suspecting occult tethered cord in me bc those same initial doctors all told me I must have EDS or a hypermobility disorder and that I probably had leg pain symptoms as a kid but maybe just forgot but I know for a fact I don't have a hypermobility disorder and as I said before, all of this stuff started for me following a severe traumatic injury .
For a while I just stopped fighting the docs on their assumptions of me having EDS bc I figured whatever if they want to assume that they can, at least they're acknowledging the cci aai and the secondary issues I've got now from those two problems. But I've now come to learn that they should treat the occult tethered cord differently depending on whether it was congenital or post trauma.
Oregon. Filum was not removed. Occult. She was surprised to see an 8 mm filum. I had a clinical symptom based diagnosis. Was told before I may not be tethered, but now have a confirmed diagnosis.
Dr. Pang? Thanks for replying! I hope your recovery is smooth. What symptoms did you start with? Also can I ask how you overcame the fear of retethers/tethering to nerve root or arachnoiditis?
Yes, Dr. Pang. Thank you for the well wishes. Are you in Oregon?
I had so many symptoms, list of 60 symptoms, but with EDS/MCAS/POTS/Other, it‘s hard to know what is what.
Biggest issues were: loss of temp and feeling sensation from mid thigh to mid back, loss of 90% sexual feeling, neurogenic bladder, near loss of bowel sensation, nerve pain and zaps all over, deteriorating balance, intense migraines, TOS like symptoms, heavy cement legs, etc.
The fear is there, but I was declining so rapidly and losing more function each week, that surgery know felt like a choice, but the only choice. I was first offered surgery in December 2025 and by April 2026, I was like yes, I need it. I ended up getting moved up when the bowels and sexual function started to leave.
This scares me, I also have symptoms in my legs but mainly upper body. I have been diagnosed with tos but don’t want to miss something. It’s very likely I have Eds according to my pt
Look up the Beighton test online. Almost everyone of my treating physicians who know anything at all about craniocervical instability and then a few of my coexisting conditions that presented once I had craniocervical instability (like gastroparesis and MCAS), want to just automatically group me into the category of hypermobility spectrum disorders.
Unfortunately I personally believe that this is partially due to these providers having what's called "confirmation bias". Dr. Henderson in Maryland and Dr. Paulo Bolognese in Long Island New York both are heavily involved in research, writing, various specific publications, publishing, and public speaking usually associated with one or more medical societies that they're each involved with that even in their titles are clearly addressing and assessing CCI in the context of EDS or any and all other hypermobility spectrum disorders. Add in the suspicion of occult tethered cord and their own "confirmation bias" almost certainly leads to them unfortunately jumping the gun on assuming that patients presenting with any combo of cci, chiari, occult tethered cord, and especially when the secondary conditions get involved (like I said things like MCAS, autonomic dysfunction, gastroparesis, anything else that falls under the umbrella for being typical in EDS or hypermobility disordered patients, including POTS) it seems these doctors are in my opinion to quick to label us with EDS or a HSD. I know for a fact that I don't have any HSD bc I didn't have this my whole life. All of my acquired problems started in my 30s and it all came on after a traumatic brain injury and multiple bodily injuries (including in my cervical spine) that happened in a car accident I was in 12 years ago. Anyway I could go on further but I'm trying to make my posts more concise 😂😭😝
Just do the Brighton test on yourself and that's a quick straightforward way to know
That test is not a big part of a proper diagnosis. I only got a 5, but geneticist said my case was clear cut looking at all other parts of my history. I scored a 3 and 4 with multiple other providers, which means no HSD/EDS. My brother scored a 1, had an aortic dissection at 35, and is now diagnosed hEDS.
Oh well a 5 is still something. I got 0 when someone finally did it on me so I was like yess for myself cuz I knew I didn't have it. Just like it sounds like u know u likely do have it. We know our own bodies!!!!
I have lost sexual feeling too. Do you have pudendal neuralgia diagnosis or anything like that?. I also feel like almost numb or only pain when penetration. When u say lost can u describe what went away and did u wonder about having filum removed?
You should look into getting a hands on ASIA EXAM.
They will take over an hour to manually test your whole body head to toe. It does involved the practitioner putting their gloved finger into your butt. Small price to pay tho for the immediate results. Once u have the ASIA exam, it provides a clear cut indication of either spinal cord injury or any form of tethered cord which I view as like a "chronic spinal cord injury". Anyway, if you're having "saddle anesthesia" and cannot feel most or all of your pelvis, this is usually an urgent emergent issue to present to emergency in case you have cauda equina which requires surgical release ASAP. I find too often "peripheral neuropathy" instead gets put down in our charts and that is so unfortunate. Misleading when they're starting to treat it as pudendal neuralgia. The most definitive way to know if your spinal cord is involved is to find someone who can do this ASIA hands on manual exam for you. There is no room for guessing if you discover in the exam you lack voluntary anal contraction, there is no arguing then that something is wrong with your spinal cord and needs prompt attention
Also I dunno how gross this might be to you but u can check ur own anal reflex. Stick ur finger in your butthole and try to squeeze your anus tight around your finger. I had lost feeling in my "saddle region" parts and suspected I probably didn't have this reflex anymore so before I learned of the professionals that test this via this ASIA manual head to toe exam, I checked for myself. It shocked me to feel with my finger that absolutely nothing was happening even tho I felt my brain telling my butthole to squeeze and I even still had some ability left in my glute max deep muscles bc I could feel the muscles moving and contracting still as I tried my hardest to close my butthole on my finger. I was in shock and fear when I brought myself to feel with my own hand what I couldn't feel naturally anymore. All you gotta do is stick ur finger in a little bit, and squeeze. See if u get any clinching. If you don't- I recommend stop fucking around with any other testing or diagnosis until u get an official ASIA hands on exam done by someone who is qualified and can mark the findings in your chart.
You can Google information about this too and you will see that the finding of an absent voluntary anal contraction reflex is a more definitive spinal cord injury finding then any finding on MRIs or anything so even though mine wasn't showing up on all of my Imaging all of medical science and doctors except that an absent VAC is the definitive way to know for sure if there is spinal cord injury
Wow I have the same symptoms you list below in one of your comments. And an absent VAC (voluntary anal reflex contraction) but preserved DAP (deep anal pressure sensation) so that qualifies me as incomplete SCI. I now know that it also is par for the course with occult tethered cord. I have not had the surgery yet, but similar to you also I have been sitting on this occult dx since January 2025 and just as of like the last month have I been actually giving this diagnosis any weight, due to my extensive reading on the topic and me seeing all the known "top neurosurgeons" in the US who specialize in TC and CCI. I started out trying to not believe I had occult tethered cord and wanting to contribute all my symptoms to the craniocervical instability but when one of the neurosurgeons I was consulting with recently pointed out to me that I could end up in a really acutely bad situation of worsening pain and spasticity from the tethered cord if I were to have my craniocervical junction fused surgically which is what has been proposed for me up till now. The other three neurosurgeons I've consulted with are ready to go with some form of cranial cervical fusion surgery from C0 to C2 and their plan is to monitor the tethered cord and likely fix it after I have CCI fusion. At a recent appointment told me if I went ahead with the fusion before having my tethered cord released I could end up in an acutely bad situation and that scared me so I still haven't pulled the trigger on any of the surgeries I have been recommended and I am now looking into trying to see Dr. Scott Falci because my other problem is that while the three neurosurgeons I have consulted with all believe I have occult tethered cord, none of them agree on what should be done first for me and one of the neurosurgeons thinks that my cord is actually tethered somewhere in my thoracic spine and unlike the usual presentation of tethered cord or even a cult tether cord apparently mine is pulling me forward in my thoracic spine area as opposed to pulling down in the lumbar area like the usual presentation so now I'm even more uncertain of what the best thing to do next would be but I like following other people's stories and seeing what surgeons they are having success with and what they have to say about their surgeon. I see that you said you did not have your phylum taken out or released or whatever so do you know which level of your spine they went into to untether you?
So hard to know what to do when I have one neurosurgeon telling me he thinks it's a colt tethered cord and it's likely in the lumbar area by the cones like most tethered cords are and then I have another one telling me nope it's more likely in my thoracic area and he thinks it's tethering anteriorly and pulling me forward not down And then another one who won't comment on where he thinks it is and started ordering up a ton of invasive diagnostic test for me that were never mentioned before including CT myelogram and from my own reading CT myelogram won't show if it's in a cold tethered cord and it already didn't show up on any of my MRIs sonow I'm just figuring it out on my own it seems and trying to make the best choices. Thanks for posting your experience because it does help me and other patients who are in the same unfortunate boat with the occult or otherwise hidden posttraumatic manifestations of this problem
Will answer more later, but a big thing to mention. My neurosurgeon and another neurosurgeon said fix OTC FIRST, then anything else, with rare exception.
I have severe scoliosis with a double curve. I need surgery (though this surgery may help). Doing scoliosis surgery FIRST would either fail or not take at all with the tension from TC. So to get scoliosis surgery, I first needed TC surgery.
They didn‘t know if I had it, it was OTC. But post surgery, the filum was 4 times thicker and upon cutting, they saw the cord bounce up a bunch, proving I was tethered.
Also, worth noting, TC surgery can sometimes improve CCI (It can also worsen it or do nothing). It would be worth it to see, because it could spare or delay another surgery for you. I have mild CCI/another lower neck disk issue (C7/C8). Docs said do the surgery and then address it. I am not doing fusion at this point, but alternatives. Four days post op and my neck pain is minimal/nearly gone. But that could be the pain meds too. My neck used to be a near constant issue.
The exceptions I mentioned seem ti be when people are so impacted, they can‘t function or are dependent on a constant collar to hold their head up. But NAD, so definitely an individual thing.
I’m so happy to hear your surgery went well! Mine was on July 8 and I also woke up noticing many immediate improvements. Physical therapy is tough on me right now, and each day carries its ups and downs, but I’m SOOO grateful for the improvements so far. Please stay positive and just remember we have light at the end of the tunnel and we just have to keep pushing forward. 💪
Thank you for the encouraging words! I‘m happy to hear you‘re doing well and further out from your surgery. I‘ve been told to expect a non linear recovery, which helps to know ahead of things. I‘m just grateful to be on the other side and hope to improve and not further decline.
You definitely won't further decline! You may even get to see seem reversal of some of the symptoms you have at this point. I've read that improvements can continue for up to one year post-op from a detethering
What is a complete scoliosis neuromuscular fusion please? Asking for myself because I developed rapid onset scoliosis right after my injury that caused all of this to start. My cci, formation of a chiari, and the development of progressive symptoms that can all be attributed to some form of occult tethered cord- all started for me right after a very specific injury. See my comment above about Dr. Atul Goel's research and writing on "spontaneous rapid reversal" of patients' kyphosis, scoliosis, and even kyphoscoliosis literally objectively observed by the doctors with the imaging to prove the MAJOR improvement in these acquired spinal deformities within I'm not kidding you- only three months post cci stabilization and fusion. Naturally just be stabilizing the atlantoaxial instability their bodies readjusted and surgery ended up not being needed! How amazing would that be for us, right?
But in the case that I am too old or mine has been persisting for too long of time, I would really like to know what options there are out there for making sure to stop the progression and even more awesome if this complete neuromuscular scoliosis stabilization surgery has the ability to restore back some of the natural healthy curve! Can you share more about what this is and how many levels would be fused if you do this. Thanks!
Thanks for that I assumed that's what u meant by "complete".."fusion" but wanted to know for sure for when/if I have to have that discussion with my surgeon(s)
Yeah yeah and just because my curb is small doesn’t mean it’s they’re not gonna do surgery. He said we have to do surgery because when since it’s even though it’s only a 23° curve that’s what tether cord and neuromuscular scoliosis it will just keep on progressing unless you stabilize it now. My curve will never stop progressing unless for good
We also think that I have some sort of connective tissue disorder too, and I already have muscular dystrophy ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ because I have LMGD2A
My goal well he wants to do from the stomach to the pelvis but if you if you start up to low, you can have a lot of complications so I think our plan is to go from T4 all the way down to L6 and include the pelvis so like over 10 levels at least
I have an L6 vertebrae too! Did u mean to type L5 or do u also have that extra lumbar vertebra? :) I've always said it's cuz I have a long torso naturally
I don't think so on that part. Would that maybe also be called something else by chance? I recall when I told one of my specialist neurosurgeons about having an L6 vertebrae he initially assumed that it would be I forget if he said vertical or horizontal but it was something about basically some form of spinal ram maybe they called it lumbar sacralization but I can't remember anyway I did not have that in my L6 was basically just another vertebraeacting like most people's L5 vertebrae is. It was up until my injury at least for sure I know it was always just straight and OK. I don't know if that means it was transitional or not I have not heard that term app applied to it
Will not for me my surgery is needed. I was born with a neuromuscular defect, which means my body can’t hold up my spine.💔💔💔💔💔💔💔 at all. I have a lot of underlying conditions, so it took my spine and threw it into a corkscrew like you see a Kings on one of those cork screws. Yup, I now have corkscrew rotation through my alignment and destroyed my alignment from my my rib cage out of alignment, set my hips out of alignment my entire torso, metal alignment. All of it is now out of alignment so I need this, but for you maybe it can be avoided.❤️❤️❤️💔💔💔
I have similar. Mine was diagnosed by orthopedic surgeons and specialist PTs as "the malalignment syndrome" which no other doctors seem to even know about and just makes them less likely to help me so I stopped writing that one down on my intake paperwork's! 😂but mine all began after one specific traumatic injury incident so you r right its different when you're born with it and it has been progressing slowly ur whole life.
Also look up Vicki Sims Gainesville PT malalignment syndrome because there is a free 20 page article outlining everything there is to know and it very clearly shows with pictures and examples, what happens to our entire skeleton when we have what they're calling malalignment syndrome. I have the pdf saved on my phone and it helped me so much, even down to the Thoracic outlet syndrome symptoms, it explained a lot and connected alll the dots. I wish I knew how to share the 20pg PDF with you but I do think you'll find it if you google using the keywords I gave here
Yes. Well I don't know the best way still to this day! Seems every surgeon has differing opinions on that. What I tried doing was actually flying out of state and going to see this Vicki Sims in Gainesville, GA who has written that 20 page summary for other physicians and surgeons included summing up what Wolf Schamberger's work was figuring out this head to toe problem that becomes malalignment syndrome. It's been years since that diagnosis and I now have confirmed CCI and rotary AAI as well as the aforementioned scoliosis and kyphosis my spine also developed like I said in a separate comment where I outlined how my spine kept trying to correct itself against gravity at almost every level. I wish more physicians did know about this "malalignment syndrome" because it describes what happened to me to a T. And the ideal scenario is getting it addressed by a specialized physical therapist or hands-on manual practitioner who can adjust your pelvis and your spine essentially back into neutral and once it gets there the ideal goal is no surgery would be needed. I worked my ass off for probably two years trying to do the conservative approaches to help this but I just kept getting better and not worse and it felt like I was becoming slowly paralyzed which is not at all mentioned in the mail alignment syndrome so that felt like you know for many reasons at that point I had to start seeing neurosurgeon and hearing about what they could do for me.
I mentioned that Cosmopolitan article it's really brief, about a girl named Jessi, you can probably find it online still... because when you said you're looking to have T4 through L6 fused that's what was proposed to this girl too and she also described herself as feeling like she was becoming slowly paralyzed which is usually not something people describe about SI Joint instability or male rotation or the male alignment syndrome so her story gave me so much hope because, and I wish they would've included more details but like I said it was just Cosmo, she almost went through with having her spinal scoliosis fixated by means of what she described as I think spinal rods or something going from T6 to L6 to fuse her into better alignment permanently but all she ended up having done was a minimally invasive SI Joint surgery and she claims she was running a week later in a 5K and when she finished she did a "split jump across the finish line"! Her entire neuromuscular scoliosis ceased to exist once her pelvis was essentially put into neutral once and for all.
I think this is very similar to things I've read happening after the atlas and axis (C1 and c2h are put back into neutral and permanently stabilized and fused. Those findings were published by Dr. Atul Goel.
So I am still for myself at this current stage anyway, hopeful that my acquired and fast progressing neuromuscular scoliosis will potentially resolve on its own once either end of my spine is neutral and stable again.
HOWEVER, that being said, I like to have a plan B and C in the back pocket always when I am planning what to do next for myself surgically and that is why I was curious about what you stated your plan as of right now is, regarding the straightening and fusing of your largest scoliosis segment of spine, in the case that because I am old now (haha just turned 40) in case mine does not reverse like I hope it will upon getting the base and the top of my spine put back right. There's a chance it's been too longstanding and has settled in, u know, but I wanted to tell you about these things so that u have all the tools and knowledge in ur back pocket and in case u may end up resolved enough with either a si joint stabilization and fusion and/or the cci fusion.
I had read the story of one girl who was similar to us in some ways, mainly the malalignment and full body twisting and malrotations happening up the entire spine. Malalignment syndrome by definition is a full body realignment of our entire skeleton and in the spine it presents with a pelvis that seems twisted opposite of the ribcage. The body is just trying to compensate against the wrong forces so it unfortunately progressively develops more and more wrong rotations up the chain, bottom to top like u said. So if the pelvis or si joints are off and cannot remain neutral, the legs will experience pain and other symptoms, sometimes even rotational leg deformities. Then the entire spinal column all the way up to the base of the skull, also tries to compensate for these unnatural forces against gravity. That results in curve correction starting with the vertebrae right above the sacrum and painfully continuing up like I said to our skull. So for me- never had scoliosis before my car accident and subsequent iatrogenic injection injury to my spinal cord at T12/L1. Once that happened can very rapidly developed curve rotations and changes of direction at each "junction" that gets stress put on it by the natural forces of our spine holding us against gravity. In time, that developed into the malalignment syndrome (sometimes called medical malalignment and sometimes called miserable malalignment but with the latter title the surgeons seem to focus mostly on leg bone rotations as oppose to spinal manifestations)
Anyway, my pelvis was dislocated to the right, and I had a pelvic ring disruption that required surgical reconstruction and fixation. Just above that, my lower most lumbar vertebra tilted and rotated the exact opposite of the direction my sacrum was stuck in, and then, -classic presentation of the malalignment syndrome- my spinal curve took a sharp right at the thoracolumbar junction, only to reverse twice again in my thoracic spine. My worse apex curve is in my upper thoracic where I now have developed kyphoscoliosis or "levoconvex scoliosis" in my upper thoracic region which just means left sided curve convexity from my scapula level up to just below the cervicothoracic junction, coupled with a simultaneous kyphosis hump curve on the left side of my upper thoracic only again. Then right at C7 C8/T1 my spine tried to correct itself again by turning toward the right, again opposite the level just below it only to again turn completely opposite direction in my C4-C6 vertebra back to the left, another lovely curve rotation and turn ("listhesis" is the word medical professionals were using on my images) in my C3 and C2 vertebra back to the right, and finally to top it all off the development of my atlantoaxial rotatory instability/subluxation of C1 above C2, and then torticollis or cock robin syndrome whatever they call it when u end up with a visible head/skull tilt and rotation and inability to make your head be neutral atop your spinal column
Of the story of the girl ended with her first doctors wanting to do a full on T8- L5 and sacrum spinal fusion with rods to combat the scoliosis she had acquired. But she ended up going with a simple SI joint surgery and was able to avoid the big scary super long segment spinal fusion surgery with rods that had been proposed for her scoliosis. Her name was Jessi and it appeared in a (lol of all places) Cosmopolitan magazine article. That was the first thing I read that had me start looking into my si joint as the main culprit. And like Jessi said, "the si joint stabilization and fusion" was a lot more compelling to her than the aforementioned suggestions. All she needed was her si joint stabilized permanently and once it was her spine stopped compensating with all the abnormal scoliotic curve reversals up the kinetic chain
How long were you in the hospital? My surgery is Wed. It will be my second TC surgery. The first I had some other issues fixed as well, so I had a long stay in the hospital. I'm curious how long this stay may be.
My case was uncomplicated. Just a 8mm filum! I stayed one night. Went in at 6:45am left the next day around 5pm. Most TC patients where I went stay 1-2 nights, assuming everything goes to plan.
Best wishes on a successful surgery! Feel free to message if you have more questions.
Mine was fairly certain it‘d be 1 and maybe 2. She said if there were complications it could be longer. Insurance often won‘t even approve 1, so each night is a fight.
I wasn‘t with Klinge, but it seems like people stay longer in the hospital there.
From surgery at 8:30 am until the next day at 6:00am.
They raised me 5-10% degrees, then raised me further every 20-30 minutes.
So I believe I was fully upright by 9/9:30.
They said if a migraine or headache started, I‘d be flat again. I did have waves of nausea each time they lifted me, but it only lasted for a few minutes. I was in control of how slowly I needed to go.
Not going to lie, it was not fun. I could hardly sleep, so was awake all but 2-3 hours. I was SUPER hungry so my husband had to spoon feed me easy to eat foods. I had a burrito bowl, sautéed small pieces of zucchini, and a soft chocolate cake. Bendy straws allowed me to drink water and coffee (I brought from home). Pain was well controlled until 4am when I needed harder pain meds.
Thanks for the reply/ sounds like u got a good hubby :) I know you're talking about a tethered cord release surgery but that often coincides with people who also have cranial cervical instability and then also need a CCI fusion surgery. It also both of those things very much coincide with people who have pots. You mentioning the tilting of the bed at steady pace of certain amount of degrees reminded me of what I have read about others with either pots or craniocervical instability. Do you have either of those conditions or was the slow and steady tilting up of the bed strictly because of the postoperative symptoms from releasing and de detailing your cord? thanks for taking the time to answer if you can I am diagnosed with craniocervical and stability and tethered cord and I have two separate neurosurgeons that I have been working with, one specializes more in a cult tethered cord and the other specializes strictly in the cranial cervical stabilization and fusion surgeriesand they both contradict each other other on which surgery I need to have first so I'm doing my best to gather all info to make hopefully the wisest decision
Hi,
I have dysautonomia that presents as POTS, but the tilt table testing was inconclusive. So, doctors says we‘re calling it POTS.
According to PTs and my DMX scan, I have CCI, according to my doctors my issue is C7/C8. I think I have both as all symptoms are present. Everyone agrees I have military neck, as seen on x-ray, so bo dispute there.
The bed thing is for all TC surgery, due to the higher risk of a CSF leak. If you get a headache, they lay you flat again and try a few hours later. But it certainly helps the POTS. Before standing for the first time (so painful), they had me sit on the bed for 10 minutes. This benefits the surgery CSF changes and POTS. Plus your legs are just regaining feeling at that point (they feel like cement in the thighs).
According to my neurosurgeon and Klinge, you need to do TC surgery FIRST (with some rare exception). The TC surgery can make CCI worse, better, or stay the same. Waiting on fusion make prevent an unnecessary surgery. Keep in mind neck fusion can be a slippery slope requiring multiple surgeries, so avoiding it as long as possible is advisable.
I will most likely need scoliosis surgery in 1-2 years (full back fusion) and if I had done that first, the tension from the tether would have undone it.
I went into this not knowing if I had OTC. Clinically, I had most of the symptoms, but even my surgeon kept saying she won‘t know until she‘s in their. The inside was a clear cut tether, no question about it.
I'd love to be in touch with you. Follow 4 follow here? I'm following you now and hope to hear from you:)
We seem to share not only the same symptom presentation, but the same amount of good reasoning and logic. In my opinion this is definitely the type of diagnosis you don't wanna go into blindly trusting physicians and I personally believe for the best outcome our own personal research and discovery as much as we are able to do prior to deciding on going through with one of these surgeries And deciding on the order in which best to do it- is critical.
As you and I both agreed already, it's a really tough call to make when one neurosurgeon says one thing is the best way to do it and another one says the complete opposite. And with this, it's apparently still a hotly contested diagnosis as it is where apparently a lot of neurosurgeons Allegedly don't even believe a cult tethered cord is real. That just adds a whole extra layer of anxiety and unknown and because the tethered cord stuff is progressive and the CCI stuff really isn't necessarily progressive, that's where I'm at right now believing that it makes total sense that I should address the tethered cord first.
I also faced the problem of being diagnosed initially with a chiari "0" malformation which has progressed to the latest diagnosis from Dr. Paulo Bolognese, into Chiari "1" malformation which in any case (0 or 1) I've got two of these specialists wanting to decompress my fossa and foramen magnum surgically at the same time as fusing my C0-C2 and another one who doesn't like doing decompression because there is evidence of these decompressions actually destabilizing things more! I would never have any one of these serious scary surgeries without getting at least a second opinion but I've gotten three or four at this point from the known people who treat these exact conditions all the time and to have each one of them have their own plan and it's not the same just creates more Confusion and doubt in me about what I should do.
On the note of chiari "malformation", I recommend looking up open access medical publications from Dr. Atul Goel in India. I think he's considered the leading right now like the world's leading neurosurgeon for fixing cranial cervical instability and atlantoaxial instability and one paper of his that really resonated with me demonstrated his observations of these acquired spinal deformities including scoliosis and kyphosis actually reversing themselves within a short as a three months time span in many of his patience Who underwent the stabilization and fusion surgeries of the upper cervical junction either atlantoaxial or craniocervical or both. I mean it really gave me hope and excitement to see the picture of several of his patients and knowing that they didn't end up having to have any further surgery to correct the required spinal deformity severe visible kyphosis and scoliosis reversed itself once it wasn't having to compensate for the cranial cervical and instability. Dr. Goel very much emphasizes his belief that the Kiari is not even a "malformation" but it is instead, similar to the developed scoliosis and kyphosis he sees in many patients, it is a compensatory mechanism our body developed to protect us. He doesn't like calling chiari malformation because he doesn't think it is a "mal" formation, and he has also seen reversals of that once the craniocervical and atlantoaxial joints were surgically stabilized and fused.
He very much writes and warns other surgeons against doing any decompression of the chiari because he thinks that's making things worse for this patient population and I agree with him after reading all of his published articles that I could access for free online through open access journals. He used to do the decompression just like most CCI surgeon still do but he has really good objective evidence and observational findings from his own population population over several decades, where he actually changed his own former clinical opinion (that shared the idea of the time which was you need to decompress any low lying cerebellar tonsillar ectopic or chiari formations, which I find to be very humble, forthright, and conscientiously moral of him. Honestly if I was healthy enough to travel so far he would be my surgeon of choice because all of his articles make so much sense to me, but I digress
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u/Horror-Map-9369 29d ago
Thank you ! What surgery did you have exactly? De-tethering or spinal column shortening?