Has anyone out there had a child with tarsal coalition?

Paula - posted on 07/17/2011 ( 24 moms have responded )

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Hello ~ I am new to the group :) My son has tarsal coalition and is scheduled for surgery. Has any moms out there been through this with their children? I would like to know more about what their experience was like with the surgery and recovery. Many thanks ~ Paula

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Mum - posted on 06/12/2013

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I joined Circle of Moms just to answer this question (what is Circle of Moms???). I found this post a few weeks ago, by doing a Google Search, when I received the news that my child had a tarsal coalition. Everything happened so fast and I wanted to give my impressions thus far.

Here are the facts:
My son complained off and on for 6 (he says 12) months. It was such minimal complaining (my ankle kinda hurts, but it went away within minutes) and I thought it was growing pains. It was really nothing I even remembered him complaining about until everything “happened.”
In February the complaining became more frequent. We couldn’t tie it to an injury but my child is soooo clumsy so I assumed it was a twisted ankle. I never tied it to the occasional/infrequent little complaints of the previous months. In March I became worried. It was PAINFUL. So bad that he would walk with his legs contorted. His ankles would, as he described it, “lock up.” This happened for no reason, at dinner, while walking, while running, while watching TV, in the morning, afternoon and at night. There was no cause for these “lock ups.” We did our best to get into docs who referred us for tons of tests (blood and imaging). They never got the right image as we were looking for ANKLE problems (where my son reported the pain). During this time he got to a point where he couldn’t walk for hours at a time. After a visit to an orthopedist he guessed, that it was either a tarsal coalition or a torn or deformed tendon (I forget what tendon now). He referred us for more imagining and to a podiatrist. The podiatrist knew what it was without even looking at the X-rays. Once he pulled the X-rays up, it was obvious. He only had the coalition in one foot so it was easy to see a side-by-side comparison of what it SHOULD look like.
My son turned 12 right before the surgery.
The coalition was complete (not sure if that is the correct term but essentially it wasn't partial, it was the whole dang bone). It was mostly boney (some tissue/cartilage but I was told mostly bone).
It has been 2 1/2 weeks since his surgery.
The Surgery:
It was an outpatient procedure. It took about 1.5 - 2 hours and he was home in the afternoon. I was told he does not have arthritis! They put a bandage over the wound and wrapped an Ace bandage around his foot and ankle. That was it. No casting. He had a little Velcro shoe to wear when he “walked” so his foot wouldn’t get wet/dirty and the shoe had cushion at the bottom so he could bear some weight. He was told to do partial weight bearing from day one (though it hurt too much for the first several days and he didn’t bear weight by choice). My son only needed pain killers 24 hours for the first 5-ish days. He was prescribed Vicodin. After that, he just took them at night or after extraneous exercise.
The podiatrist removed 1.5 centimeters of bone. He cauterized the bone and used bone wax. Both of those measures, he explained, were used to ensure that the bone wouldn’t grow back. He said that since my son still has a ton of growing to do, muscle and fat have stem cells and if put in between bone, it could possibly cause the bone to grow back. He said this new strategy/theory was based on newer research.
After the Surgery:
Exactly one week after the surgery his school had their first dance. He went on crutches but, from what he and the chaperones said, he walked on it a bit, jumped up and down a quite a bit and danced like there was no tomorrow. He didn't take pain pills that day until a few hours after the dance was over. He felt it then.
A week and a half after the surgery he climbed thousands of stairs (with the help of crutches) during a class field trip. He took pain killers that night but did not take any prior to the crazy field trip. That was the last time he took the pills.
Two weeks after the surgery he stopped using his crutches. He walked 2 miles that day and I made him bring the crutches but he mostly used them to hit his friends. That was the last time he touched the crutches. The following day he was running (granted, it wasn't a pretty run, but it was a run).
Three days ago he got his stiches out and was finally able to shower (that leg needed it.. did you read about the dance/field trip/running... yuck!). We were told he is allowed back in the pool in two weeks (hurray!). I asked about PT at this appointment. He said he was doing extremely well and at our appointment in three weeks he would make that call. His range of motion in his foot is normal. He has, for the first time in his life, a visible arch! They took off the Ace wrap at that appointment and my son walked barefoot for the first time. He freaked out. He said he could feel the bones moving in his body. He had never felt that sensation in that foot before. It was a good half hour of him doing weird foot movements to see what he could do now.

Today:
He is still walking well and spent 3 hours at the park running with his friends today. Occasionally, his leg will still “lock up” (I forget the term for this… “spastic” is in there somewhere) but this happens only once or twice a day (it was doing it 30x a day before the surgery). The doctor explained that his body is coping the way it was used to for so long. He said it should go away soon.
Would I do it again? No question. Before surgery his pain fluctuated between a 5 and an 8 out of 10 EVERYDAY. Five days after surgery he said it felt better than it did pre-surgery. My only regret is I wish I would have known what was wrong earlier and had the procedure done sooner. I was told that the doctor sent the bone/tissue/cartilage for testing and there was no sign of cancer (I didn’t even think about that!!! I was happy to hear it but didn’t even know he was doing that… LOVE him!)

If I were YOU:
I wouldn’t base your decision off of our experience. Do a ton of research. “Podiatry Today” has dozens of free articles online written by those in the field for doctors, not laymen, which I found extremely helpful. It helped me ask the right questions which led to my decision. Google: “Podiatry Today” tarsal coalition.

I will update if something changes and feel free to ask questions.

Shelli - posted on 04/04/2013

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Hi. My daughter was diagnosed with a tarsal coalition three years ago. She has had pain on and off and now she is 14. The coalition is bony now and she has a flat foot deformity. Docs say surgery is indicated only for pain relief. But one doc says shes in for arthritis later on. hard yo know what will happen. Her pain hasn't been that bad lately though she does have pain periodically when she walks for too long. My concern is that I read about people in their twenties tht have arthritis after havin a tc and they no longer have as many options. The surgery recommended is a resection and a flat foot correction which is huge. Any experience with this! I don't want to put her through this when her pain is "not that bad," but I'm concerned about the future. Many live with tc with no pain. How to know when and if its right to do the surgery? How to know if you wait you miss the "window" and set your kid up for u fixable problems later on? So many questions. So much uncertainty!

Ann Van - posted on 05/21/2013

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My son is sixteen years old ( almost seventeen), and was experiencing severe pain in one foot. After visits to a podiatrist then an orthopedic surgeon, with xrays and MRIs we discovered he has a tarsal coalition in both feet. He is very active and plays lacrosse. Surgery is recommended, but I am very worried about the outcome. He is six feet tall, two hundred pounds with a size 11 shoe. I am wondering if anyone has any experience with NOT doing the surgery? I am wondering how it progresses as the child ages into their 20's and beyond? Does anyone know of someone that has grown into adulthood with a tarsal coalition? Does it turn into severe arthritis? I am completely torn about the surgery....I just don't know which option is better?? We live in Florida but are considering doing the surgery at The Hospital for Special Surgery in NYC. Has anyone had any experience with this hospital? Any help is very appreciated. Thanks! - Ann

Paula - posted on 10/25/2011

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Brenda,

My son is 11 years old. He was limping with pain since last spring. After a few months of this, we took him to a podiatrist who referred him to a orthopedic surgeon. They suggested surgery. I was also torn about surgery. I tried taking him to a chiropractor for a few months. I also took him to physical therapy for a month. The physical therapist said he felt that my son really needed the surgery. It was heartbreaking for me to see him in pain and limping. I really wanted to avoid surgery, but I just felt it was the right thing to do. I understand what you are going through. It was very hard on my family emotionally.



My son was starting to limp so bad that it was causing him to have pain in his hips and his other foot.



Today he said he really didn't need any pain medicine at all and he is walking without crutches with a boot on. His surgery was only a little over two weeks ago. His surgeon said she doesn't think he will need anymore surgeries. His foot is still growing though and there is a chance that the coalition could come back. So we are just going to keep an eye on it.



It was a very hard decision for me to make, but at this point I think I made the right decision. I hope that my advice helps.



I am deeply grateful that he is doing so well!! He says he is in less pain than before the surgery and that is great for me to hear. Please let me know if you have any more questions.

Marcia - posted on 09/23/2013

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My 11 y/o daughter had tarsal coalition corrective surgery on July 1, 2013 in both ankles. We had both ankles done at the same time to alleviate post op time, PT visits and recovery limitations. She knew her summer would be different but was able to attend a one week summer camp just 2 weeks before, a few days at the beach, and we threw in a mini spa treatment with mani/pedi 2 weeks prior for fun. I discovered the inward pronation around age 7 and took her first to a Podiatrist. This doctor tried to alleviate the side of foot pain with pricey flat orthotics but took no xrays. After 1 yr. of no improvement and misery, I took her to DC Children's Hosp. to see an Orthopedic Surgeon. She took xrays, CAT scan and diagnosed her with talecaneal(sp?) coalition of her ankles. Dr. provided higher orthotics for 1 yr, then higher brace with velcro orthotics until her bones were more developed. The braces were covered mostly by insurance, the orthotics weren't as they are considered cosmetic.?? The surgery was 3-1/2 hrs. After the surgery, she had numbing in one foot for 2 mos., and unfortunately, we discovered the day prior to surgery, the doctors were not going to straighten her pronation because it would require bone grafting insertion on outside of her ankle, additional incisions and longer recovery in casts. Her casts were off in 2 wks., she stayed in a boot and 4 weeks then walked at the next appt. and began PT 2x/wk. Also, her right incision opened while in cast and leaked fluid for several weeks, still happening a little. Still recovering. If there is constant bone pain, standing in lines is almost impossible and comfortable shoe buying is a nightmare, have the surgery as soon as bones are ossified. Also, Stride Rite store or online, or (Shoebuy.com) sell Sauconys and Saadi sneakers. They have the wider widths and are the most comfortable with pronation pain, Mammoth lined crocs and suede boots are comfortable, too. Wish you and your child the best of care.

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Regina - posted on 07/05/2014

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Hello Ann,

X-rays that my son may have a tarsal coalition. He has an MRI set for Sunday, thus I am researching options now. He is the same age of your son when you posted 16 will be 17 in November. He is 6ft 212 pounds. He absolutely loves basketball.

Did you do the surgery? If so please share your experience. Thanks

Regina

Melanie - posted on 02/15/2014

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Did the surgery correct the position of his foot ? my daughters foot looks terrible and really don't know what to do about surgery she has just come out of a cast which has been on for 9 weeks and we have to go back in 8 months to see if we want to go ahead with the surgery. She only has it in one foot and it has caused her to now be flat footed HELP x

Kimberly - posted on 11/25/2013

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Thank you so much for sharing your experience. I took my 11 year old to my "Broken Ankle" Orthopedic Specialist because we thought she had fractured her 5th metatarsal. After taking an X-ray, they determined there was a bridge forming between two of her mid-foot bones, but nothing they have seen before. They put on a fiberglass cast to stabilize the foot, and took an X-ray of her other foot. Same thing. We had the fiberglass cast removed this past Friday after she developed a blister (two weeks later). She is now in a Brace/boot . The two original Doctors have conflicting views on how to treat her. I have decided to seek another opinion by a Pediatric Orthopedic Surgeon after speaking with her Primary Care Doctor. This appointment is a month out, and she is in considerable pain. She is devastated. She is a runner, and was looking forward to joining the Track team next year in Middle School. She is a natural athlete. The older Doctor advised against this. I hope another opinion will bring positive news, and more of an understanding as to what is happening in her feet, and treatment options.

Sammy - posted on 11/11/2013

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I have a son 20 he as just been told he as tarsal coalition in both feet one being really flat he as been suffering for years but only just been told he as had 2 ops on one foot which now really sticks out he is just waiting to have other foot done but they did a op one one foot said he had a extra bone they took that out but did not work so ther pinned it all and he as that bad of a flat foot every time he walked u could see the pins moving I went and asked to change hospitals and they removed them and told me that he had this condition so he just just havin his other foot done as he is in really bad pain he as to have shoes every 6 weeks as he as walked them over he is struggleing to work he gets no help he as got it that bad he can not stand on his feel no longer than a hour without pain x so hopefully this op will work

Tiffany - posted on 11/01/2013

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Hi everyone. My daughter is 2 years old and is having the same issues with both of her feet. Has anyone heard of this happening?We are schedule to go to a pedicatric orthopedic in November. I thought it was just growing pains for the past 8 months. She has absolutely no arch on either of her feet. i am concearned what they are going to tell us can yall shed some light on this for me?

Amy - posted on 10/29/2013

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yasir, with my physio they told me to get a resistant band and put it under the ball of your foot and push against the resistance do it ever day and also laying a towel down on the floor place your foot on the top of it starting at one end by scrunching it up with your toes. This is to help with the mobility of the foot/ankle. Also by placing your hand against the wall and tippy toe on your ankle then back down do this a few times over I couldn't do this on one foot so I did it on both at the same time. Hope that helps, best of luck :)

Yasir - posted on 10/28/2013

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my daughter did resection of fusion since two month but l want to know how to do physiotherapy at home

Amy - posted on 10/28/2013

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Thought id comment on this post, i was one who suffered fron this deformity when i was a child. I started getting an ache at around the age of 12 and at first thought it was growing pains & thats what the doctors where telling me too untill it started getting worse as the years went by well many yrs went by it wasnt untill i was 18 that i found out what i had before then the doctor keeped telling me it was all in my head etc i know pathetic! It wasnt untill one day at work (cashier) that i couldnt take it anymore and went to the lockers balling my eyes out and decided to go home that night i tried to go to sleep and i was in so much pain that i was screaming pain killers Wouldnt help & it was then that my mum took me to emergency and even then they thought it didnt look bad but wasnt normal so they sent me to a specalist who wasnt even an foot specalist, idiots! It was a knee specalist that picked it up & said what are you doing here you should be in surgery. About 6 months later i had surgery. Was the best thing i had ever done!! I still dont have mobility of that ankle so i cant point my foot down or up or stand on my tippy toes but no longer go to bed in such pain and was able to do most activities still cant play sport due to lack of mobility. Though i did break the same ankle which the bones started go refusd so i had to have the surgery again in when i was 24 which this time wasnt as successful as now if ive been on my feet all day & come home and sit down and get back up i can barely walk as its painful and swallon & stiff but that could be the fact that i have arthritis now since the age of 19 due to putting up with my ankle the way it was before having surgery etc. but ive also put alot of weight on too from the surgerys and breaking my ankle so that could effect it also. But if your child finds out early on in their younger years then id suggest to get the surgery they will feel so much better for it :) just dont go breaking the same ankle like i did :p it took me alot longer to recover from a broken ankle then having the surgery. Oh also make sure they do the physio! That helps alot as you will find their knee might have turned inwards from having a painful ankle that they might have walked differently on for so long as thats what they found with me, the physio had me walk with a basketball inbetween my legs to try correct my walking yes it was awkward! Lol =D

Ani - posted on 09/01/2013

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My 15 year old son was just diagnosed with Tarsal Coalition in both feet. He is also affected by Neurofibromatosis 1, which causes bone deformities. Anyone out there know if the two have anything to do with each other? i.e. NF & TC....

Jean - posted on 06/07/2013

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My daughter has tarsal coalition in both feet and we known this for over 5 years. We have been to 8 different doctors, mostly orthopedics, so far all of them has said not to do surgery, it will only make things worse for her. So we don't know what to do, she is starting to have trouble going up and down stairs. She also gets regional pain syndrome, that is where her feet turn blue and purple and is very painful to the
touch, when this happens she goes to physical therapy, and that does help. It doesn't look like anyone else has had much success with surgery so far.

Paula - posted on 05/30/2013

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Hi Shannon ~ My son had surgery in October 2011 to put a hole in where the tc was. He is going back in July to see how he is doing. His doctor did say there was a chance that the bones could fuse again. So she is going to keep an eye on him as he continues to grow. He is 13 now. I wish the best of luck for you. It was a very difficult time for us. I still have a hard time talking about it. But I remember what it felt like to want to have other moms to talk to that had a child with tc. If you have anymore questions, please feel free to ask.
Take care,
Paula

SHANNON - posted on 05/30/2013

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Hello all My daughter had surgery in Oct 2012 for this on her right foot, two bones fuse together. She has been battling this for almost over a year she is 11. I have been to two doctors the second doc I loved. There were several things we tried before we had her surgery, We did Physical therapy we did that for two months and no improvement, then we did the shots again no imporvement, we also had orthlics as well and again no help so last option was surgery. Our doc went in and cut a hole in between the two bones that were fuse and also shaved and cut some bones around as well took the main muscle and routed it though her hole in her foot and tied if off the other side of her foot. This was a long recvovery for my daughter and still to this day she is still having a lot of pain, and now we have clicking in her ankle and she swells up a lot and now walks with a limp. After surgery she went back to PT for two more months she was getting better. Now that she has been 8 months out of surgery I am concerned that the bones are trying to fuse together again and the muscle is being pintch, we go back to the doc now in june 17, i guess my concern is does the bones grow back together... I am not sure what other options we have to make her feel better. Hoping to get answers soon ... Shannon

Ann Van - posted on 05/21/2013

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Paula- my son is facing the same problem. (see my post below). How did your son's surgery go? What was his experience and how is he doing now?

Deonna - posted on 03/05/2013

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my daughter is 13 in April and has had pain for two years off and on. She feel and we went to the orthopedic for them to tell us the pain was from Tarsal Coalition. They casted her for 2 weeks he said then we would rexray and ct scan to see which kind she has. Is there a better kind to have? Luckily she only has it in her left foot. How is your son doing in recovery?

Leah - posted on 08/23/2012

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My 15 year old son had surgery 3 weeks ago for a tarsal coalition. He had been in discomfort off and on for 5 years and never told me, despite being a very active and talented soccer player. Once the pain set in, it hit hard and fast and his right foot began to turn out to the right as the fusion of bones seemed to accelerate at an alarming rate. The cast came off yesterday and he is in severe pain, again. He is a junior in HS and has already missed almost 2 weeks of school. I'm thinking that I need to pull him out for another week with a lesson plan, so that he can begin adjusting to the pain. I met a mom in the waiting room at the hospital , whose daughter had a similar surgery and she told me that the real work begins after the cast comes off. That it was 6 months before her daughter was walking again, but that overall the surgery was a success. Her daughter had just had the other foot done. I wish that I had known about this condition in my son 4 years ago, as I think it would have been easier to go through as a younger person, vs. a 6'1" 15 year old who will not be able to learn to drive or participate in any physical activities as a junior in HS. The docs have told us that he will likely need a second surgery in 6-9 months, to correct his severe flat-foot which was a by-product of the coalition. If you catch this condition early, I would act early. If surgery is needed, I would do it, just ensuring that you have someone who is experienced with these surgeries. Teaching hospitals are always the best. San Diego Rady Childrens Hospital has an excellent group of orthopedic docs. Good luck to all.

Brenda - posted on 10/25/2011

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PAULA- Thanks for the reply. This has hit us so quickly, it is great to hear from some one who has been through this.
So glad that you son is doing well! Only a week in a cast is great! So is his reduction in pain. Can I ask a few questions: how old your son is? for how long was he experiencing pain? I am so torn about surgery...i have read all about the debilitating complications that this condition can cause later in life...but my son is very active (hockey and lacrosse) with no pain at all. We brought him in to the podiatrist because of his ridiculously flat feet.. even though seem to cause him no problems....now a week later we are facing surgery on both feet!
Sorry for the long post... it is just great to connect with someone who has been through this.

Paula - posted on 10/25/2011

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Hi Brenda,
My son had surgery on October 7th. The first day after surgery he was in some pain, but the pain medicine helped with that. He wore a cast for a week and is now in a walking boot. He can walk around the house without any crutches. So far, his pain has not been very much. Before surgery his pain was a 3 out of 10. Now he says his pain is a 1 out of 10. He is on pain meds, but he rarely says he needs them. He started Physical therapy yesterday. I will keep you posted on how his recovery goes. There is a facebook page about tarsal coalition if you would like to talk to other moms about the it. Please keep in touch with me to let me know how both you and your son are doing.

Brenda - posted on 10/25/2011

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PAULA LEE - Just found your post... my son (10 years old) just was diagnosed yesterday with tarsal coalition in both feet (ugh!) ...surgery is the recommended course of treatment. I would love to find out how your son made out with his surgery. Hope he is well.

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