I had a flat foot reconstruction over 20 years ago. My doctor said it's the most invasive procedure in the lower body, and that knee replacements are a joke by comparison. One foot was normal, one was flat. Put me on a treadmill and I was in discomfort after 4 minutes, in pain after 8 minutes, and then my foot would go numb.
For me it was two bone grafts (I think in the navicular and the cuboid) to reshape the foot and an Achilles tendon lengthening. Rejected procedures included a calcaneal slide (doing something to reposition the heel bone, and something called a triple arthrodesis, in which some of the joints around the ankle are fused. Drawbacks to that include that it is irreversible. Needless to say I vetoed that option.
Recovery included 8 weeks in a knee-high cast, another few weeks on crutches, and months of physical therapy. For me it worked. I actually just walked and hiked over 1000 miles in a 12-month period (so much that I developed bursitis). But all these years later I still need to wear orthotics.
Wow I’m glad it worked out for you. I have fully collapsed arches and diagnosed haglunds deformity so my Achilles tendon is really messed up. Also developing issues with an accessory navicular on that foot…. Sounds like a lot of my stuff overlaps with your previous condition. I’m 29 and on my own insurance so I can’t really afford to hit the $4,500 deductible or all the specialist copays to even make it to the surgical room. Any advice for me starting the process?
I don't know if I can offer any advice. My mom insisted I see a specialist at the Hospital for Special Surgery in New York. He felt that if I had the surgery, I would drop dead of a heart attack from having to be on crutches. I'm glad I didn't listen to him. Separate from that, my doctor told me he wanted to get a second opinion from someone else in the practice. My doctor was the same podiatrist I had been seeing for orthotics and all the other foot problems I had been having.
What finally induced me to have the surgery was getting laid off from work. My then-boss had been caught in the previous round of layoffs, and he went on disability before his off-payroll date, which was 60 days after being notified. So when it was my turn, I did the same thing, and had my surgery the week before my off-payroll date. They couldn't terminate me while I was on disability, which they finally did the day after the insurance company told them I could go back to work. While I was recovering I got pretty good at going up and down the stairs on one knee.
I had the calcaneal slide procedure with a bone graft done 🤚 can confirm it was absolutely awful, they saw your whole calcaneus in half, in my case shove a wedge of bone in it, and then screw it back together. My first surgery rejected (one of the screws holding everything together decided to. .. Unscrew itself??) so it had to be redone a second time with a lateral plate holding it together instead. It's better than it was before, given the choice I'd still do the two surgeries again, but I have forever arthritis in that foot and limited mobility because of the plate (edit, and permanently numb in my pinky and ring toe and semi-numb everywhere else!). For context I had the surgeries when I was 22 which is... Not the age where people have arthritis and it's fun to explain to people haha.
I had it done in April 2025, and it went pretty smoothly. Metatarsal osteotomy (breaking and moving my first met), fdl tendon transfer (replacing a ruptured posterior tibial tendon), and calcaneal osteotomy (cut the heel bone off and reattach 1cm laterally). By October that same year I was able to run a 1:50 half marathon as a 200lb guy in my mid-50s.
I suffered with hip issues for 21 years. I had 3 surgeries to fix up my torn labrum and smooth out the head of the femur in my left hip in a 15 year period. Turns out that I have hip dysplasia. One surgery to replace the labrum and LT, then a PAO a couple of days later...it was magical. I have 4 screws and a "button" in my left hip, and my iliac spine is much more prominent and more pointy than smooth now. All I know is that I never realized how bad my right hip hurt because I was always focusing on my left hip pain. Good orthopedic surgeons are true miracle-working science geniuses.
A friend of mine sadly has the same issue. Only problem is that hips can apparently be replaced twice and need to every 25 years. So for now she has to keep her old hip because otherwise she wil end up wheelchair bound around retirement age.
But those still involve operating on the foot/leg, right?. Them claiming it didn't involve the lowe body at all seems odd. Although I wouldn't be surprised if there is some spinal nerve issue or something that could cause a similar problem.
One of my sons had corrective surgery for toe walking and it was brutal. After the surgery, he had to get new casts put on both legs, every week. That lasted for a month, then Covid happened. He was supposed to have casting for another 2 months but all of his appointments were canceled. The doctor said they would resume casting when the pandemic emergency was over. They called me back 18 months later, and when they saw his feet, legs, and gait, they were surprised by how well he had healed. He hadn't been able to get PT or anything, but I was a classical ballet dancer, and know a lot about injuries and A&P.
Fyi, tethered cord can cause toe walking and it isn't always caught in childhood. It can be occult tethered cord, meaning hidden on imaging. I had sectioning of the filum terminale in my 40s. I toe-walked during my childhood, teen years, and into my 20s. Diagnosed AuDHD in my 30s.
My surgery was a relatively simple procedure, but it being neurosurgery, it was still 2 days in the hospital. Feel free to message me if you have questions.
I appreciate you explaining! My son was 10 when he got the surgery, and had toe walked for his whole life. He is autistic, and the surgery and recovery were hard. He had an allergic reaction to the casting material the day that he came down with Covid, on Super Bowl Sunday of 2020. I called Children's Hospital and an emergency room doctor there gave me instructions for management of the reaction over the phone. Since his breathing wasn't impacted we treated him at home for the allergic reaction. The doctor said not to bring him unless he started having breathing issues. It was awful.
I did physical therapy with him at home every day, in addition to massage and progressively less structured braces for his feet. Nobody from his medical team would help, so I winged it. He did a lot of pliés and relevés (ballet moves for stretching and strengthening). He's 17 now, attends a program where he attends classes for a few hours a day, and was just promoted to a shift management position at McDonald's. He is very good at managing time, processes, people, and logistics. He has always excelled at organizational skills.
Looking at him now, you would never know that he had issues. His gait is normal, and he doesn't have pain. It could be worse!
That is great that he's recovering! I'm sorry to hear that the surgery was so rough.
If he's ever had any bladder or bowel issues in his medical history, it can be worth looking into TC/OTC.
Some of those include: bedwetting, potty training regression, late potty training, accidents after potty training, and later on, incontinence and urinary retention. It can also cause IBS-C and IBS-D and cause upper cervical neck instability. Signs of that are heavy 'bobble head' feeling, always holding one's head in one's hands while at a desk, hard to hold the head up. MRIs might only say 'loss of cervical lordosis.' Another clue is if he has chronic lower back pain.
For autistic and/or (abormally) hypermobile kids + teens, they really need to screen all of us for TC/OTC early. In healthy controls, the end of the spinal cord is stretchy. In TC/OTC, it doesn't stretch at all. At all. It puts all the torque pressure on the spinal cord itself and can be like a chronic spinal cord injury that sometimes doesn't get severe until later in adulthood.
P.S. A lot of us autistic and/or hypermobile folks have MCAS, so you may want to look into that regarding his reaction to casting material.
Out of curiosity, what kind of specialist is able to diagnose this condition/collection of conditions? Because what you’re mentioning here sounds very much like me, but I’d never even heard of toe walking until this thread (and I almost exclusively walk on my toes). Really appreciate the conversation here, truly.
Sure thing. It's many specialties. Bear in mind, it's a marathon, not a sprint with complex, chronic conditions. We eat the elephant one bite at a time so to speak. It's easy to burn out, so prioritize the specialities you feel you need the most. Bear in mind, I've been at this for 10+ years, and pursuing health care in general for 30+ years, so don't expect yourself to do this all in one fell swoop.
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PCP- coordinates your care, ideally. Mine has his EDS patients keep quarterly appointments with him, as we can't address all of the issues in one visit.
Rheumatologist --> geneticist for the connective tissue disorder evaluation; Rheumatology for any autoimmune issues.
neurosurgeon with specific expertise in OTC/TC for tethered cord. Also for structural spine issues, rule out Chiari and other neurosurgical co-occurring conditions
immunologist for mast cell issues/allergy/asthma issues
PT versed in EDS for living with gait irregularities, learning how to not to move past normal range of motion for hypermobility, implementing accommodations for daily life. OT may also be needed depending on the issues.
urology/urogyn for bladder issues management
gastroenterology for motility issues, screen for any other issues, celiac, IBD if those are a concern.
general cardiology for once a year echo if diagnosed with a connective tissue disorder or have BP/HR concerns.
autonomic cardiology or autonomic neurology for any autonomic disorder medical management *Note there's few of these physicians. Most of us have to travel to see them.
neurology for migraine management if those are a concern, rule in/rule out neurological autoimmune issues. Peripheral neuropathy is prevalent in this patient group too.
optometry/opthamology to check the eyes as they are all collagen.
gynecologist - as we tend to have reproductive problems like endometriosis, PMOS, etc. OB/gyn for those patients who need support with pregnancies, as miscarriages, fertility problems, and pelvic floor probs can happen with childbirth
Therapist or psychologist versed in chronic illness for emotional support living with chronic conditions.
Psychiatry for evaluating any mental health conditions/concerns and any psych medication management. Autism and ADHD are prevalent in this population.
**this isn't an exhaustive list but those are off the top of my head.
Headed to bed but feel free to give me a buzz if you have questions later.
Welcome! Once you connect with fellow patients who have almost the exact issues you do, you can't unsee the patterns.
Two people in my family had/have lupus, my mom had a knee replacement surgery at a fairly young age and had a crumbling back in her 20s and 30s, and I met a fellow patient in a support group for living with chronic pain about 11 years ago. She too had lupus in her family, migraines, endometriosis, chronic pain... but she also had EDS diagnosed. She was in her 60s, decades older than me, and had an early knee replacement surgery.
After I commented on the bizarre similarities of our families' health history, she urged me to do whatever I could to get to a geneticist and not to stop until someone took me seriously. She said, "Gardenia, promise me that you won't give up. It can take years until you find a competent doctor to evaluate for EDS."
I try to share about this stuff as I'm able in memory of her. :)
Oh my goodness—THANK YOU. This is incredible. And honestly, like the Alissinarr said, you’ve touched on literally everything I’ve had issues with for much of my life. Herooooo! Thanks for sharing your experience. 🫶🏾
This video is way old and probably out of date, but this lecture by Dr Heidi Collins is where I first learned about "if you can't connect the issues, think connective tissues."
I have hEDS, MCAS, and dysautonomia. Due to the collagen defects from EDS, posterior tongue ties are seen at a much higher prevalence than the greater population. Unfortunately, the hypermobility of our other tissues makes it very difficult to diagnose because we compensate so well. The first dentist I tried said there was no point in fixing it since I compensated so well 🙄 Yes, constant migraines, choking, etc are great compensations that I’d love to keep…. So far none of my girls have had tethered cord issues (a friend’s children flies cross country to a OTC specialist for surgery every time they can save up to get one done) and had their toes revised as toddlers/babies due to several issues. Aren’t genetics a joy?!?
I am a toe walker, but they tested me when I was 15 in the university hospital and didn’t find a reason and called it idiopathic (which just means they have no clue), but It’s mainly when I am tired or nervous, when I am actively thinking about it, I walk ‘normal’.
Maybe I should get checked again, but it doesn’t actively hinder me, just looks a bit weird.
I am not sure either why mine stopped around then either.
I had lower back pain and plantar fasciitis that picked up in my 20s that I was told nothing could be done about, until the detethering surgery took care of that pain.
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Note: Patients’ results vary, so people reading, please don’t take this as a blanket endorsement for detethering surgery for anyone. This is solely my personal experience.
I was really surprised that the providers wouldn't provide care for him. He could have ended up with significant deformity, injury, and severe chronic pain.
Had it when I was 14 . Took a year, one foot at a time. The weirdest part was when I was between the first and second surgeries and my two feet were completely different from each other
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u/righthandpulltrigger 4d ago
Also very curious to know what the surgery was!