tarsal coalition

[happymom7]

Hello ~ I just found out my son has tarsal coalition (bone fusion of the foot).  I don't know any one to talk to about this because it is sorta rare.  I would really like to connect with moms out there who has been through this.  He is scheduled for surgery, which I don't like but he is limping and having pain.  Please connect with me if you can relate. 

Much Love

[ljc]

happymom7,

I have no BTDT experience.  But, I do have a 7 year old son who was just diagnosed with a calcaneal tarsal coalition.  He injured his foot this spring and was never able to completely recover.  He continued to limp and will admit it is "sore"  if asked.  We have been to a local ortho and to a pedi ortho at Boston Childrens Hospital.  We will see one of the doctors there this month that is a foot specialist.

How old is your son?  When is surgery scheduled for your son?  I would love to keep in touch and know how you are both doing.  I don't know anyone else with this condition.  My husband and I are both Physical Therapists, but I have never had a patient with this diagnosis.  

Take Care

LJC

[happymom7]

Thanks so much for responding!  The doctor wanted to do an excision of a calcaneonavicular coalition.  He was scheduled for surgery on Aug. 10, but I postponed it to try a more conservative approach.  He has been working with a chiropractor seeing if that helps.  My son is 11.  I have met a few people through a facebook support group who have tarsal coalition, but other than that I don't know anyone else with this condition either.  I would love to keep in touch with you also.  I think it is great you are Physical Therapist because at least you understand more about the anatomy of the foot than I do.  My son's limp has gotten better through working with the chiropractor.  He is wearing a splint at night when he sleeps.  He is also doing exercises to help with the condition.  My son has tarsal coalition in one foot and his other foot is flat, so we are also working with that. 

Please keep in touch!

Many thanks

[happymom7]

LJC,

I was wondering if you could give me some input.  I was taking my son to a chiropractor to see if we could avoid surgery.  I have been doing it for 3 weeks.  There has been some improvement, but he is still limping.  I took him to a pcp on Friday and he suggested that I take him to a PT instead of a chiropractor.  Do you think that PT could help this condition or do you think it is just something where surgery is the best option?  I would really appreciate your input, because I have read the longer you wait the more arthritis can set in.  Being you are a PT, I would love to hear what your think of this. 

Many thanks,

Paula

[ljc]

HI Paula,

Sorry I haven't responded - haven't been here for a few days.  I should tell you that in my practice I treat mostly adults and have never had a patient with this diagnosis.  Nor have any of my colleagues.  So I too am thinking this through and learning as I go.  Though I do have an understanding of the anatomy and biomechanics.    

There are times that I refer to chiro and I have used chiro in the past myself.  However, in this instance I wouldn't imagine it would help.   This is what I consider a "fixed deformity"  - meaning there is nothing short of surgery that will change the fact that the bones are fused.  Therefore the joint can not be manipulated.  I wouldn't think manipulating the surrounding joints would be helpful as they are likely hypermobile to compensate for the fusion. 

PT might help if he has significant muscle shortening and or weakness.  My son does not have either tightness or weakness.  My son does also limp, but complains only of minimal pain.  The other thing that might help is a custom (or off the shelf) arch support.  I believe this is how they conservatively manage the condition.  

I would love to conservatively manage this with my son and I think that the Children's Hospital in Boston will if they can.  However, my concern as a PT is that the "limp" or gait deviation will lead to excess wear and tear on the other joints.  I guess you can think of it like a car that is need of an alignment with asymetrical wear on the tires.  Don't get me wrong we are not all perfectly symetrical people, but when people have a "significant" deviation from the normal in bony alignment they will get premature arthritis in surrounding joints.  So I guess the million dollar question is how and when to decide when surgery is indicated. Does your son complain of any lower extremity or back pain?  My son does not but I worry that waiting for significant pain will be an indication that he is already abusing other joints.  How active is your son?  My sons is very active and gets great enjoyment from the sports he participates in.  

We will be seeing the foot specialist on August 26th and I will let you know what I learn after that visit. What does your ortho doc recommend?  Do you have confidence in his/her skills and recommendations?

Lets keep in touch

Laurie 

[happymom7]

Hi Laurie,

I just wanted to update you on how things are going.  His PCP recommended him to a PT to help with tight hamstrings and to work on a conservative treatment before trying surgery.  He said he would like him to do at least 3 months of PT.  They are all working together on a conservative method first.  They had told me that sometimes the tarsal coalition will break on its own.  I am not sure if this is a good thing or a likely thing.  Anyway, I just wanted to let you know how things are going.  Please keep me updated on how things are going with you. 

Take care

[ljc]

Thanks Paula

Keep me posted.  We are in a "boot" for one more week and will see one of the foot specialists at Boston Children's Hospital next Friday - I will let you know what I learn.  Good luck with the PT!

[happymom7]

Hi Laurie,

We have decided to go ahead and give surgery a try.  The physical therapist said it was best to go ahead and do the surgery.  I am in the process of scheduling it.  I just wanted to let you know how things were going for us.  I would love to hear from you.  How did the appointment go with the foot specialist?

Take care,

Paula

[ljc]

Thanks Paula

My husband attended the visit with my son as I was out of town.  The doctor gave him the statistics re pain resolution with and without surgery - 50% resolution without surgery and 75% resolution with surgery.  Ok I wish those odds were a bit better.  BUT my son doesn't complain of much pain.  My worry is that he adjusts his gait and his movement patterns to avoid pain and/or because the mechanics of his foot demand the change.   And I still find him limping even though he is not complaining.  He was just  coming out of a period of immobilization so she wanted us to follow up in another 3 months and let her know how he is doing.  She did tell my husband that he was not too young to perform the surgery.  

I also spoke with the orthotist that I respect and have worked with for many years.  He has children on his caseload both pre and post surgical with this diagnosis.  He told me that he would absolutely do the surgery if it was his child and sooner vs later. He feels like I do that this will just cause excessive wear and tear on other joints and that his outcome would be better earlier as his bones are still developing.

He is also going to fabricate an orthotic for Aidan's shoe next week to hopefully improve his gait in the meantime.  The MD had little to say about orthotics and only suggested a supportive shoe.  We are fortunate to have this friend and colleague to make us this orthotic as they can be very expensive and kids grow so fast.  I will say that we've done our back to school shoe shopping and I convinced Aidan to purchase a pair of "running" type sneakers that had a bit of an arch.  I think he does better in them.  Maybe the shock absorption - Maybe the elevation under the heel.  

Paula- I think you are making the right decision and my husband and I are going to push to do the surgery sooner vs later at our next visit - we may in fact move the visit up so that we can schedule this winter.  As you know it's just so hard to make the decision to do an elective surgery on your child.  As parents we question so many of our decisions.  

We feel confident in our surgeon's skills - my only other advise is to be sure that this is a procedure that your surgeon does often.  Surgical outcomes are so dependent on the skills of the surgeon - I see this in my office everyday.

Keep me posted I would love to know when your son has surgery so I can keep him in my thoughts.

Laurie

[blnapril29]

Hi Moms!  I just found this thread... I would love to hear what is going on with your children.

My 10 (almost 11) year old son has T-C coalition in both feet.... no limp, but a bit of an awkward gait, terribly flat feet, but absolutely no pain..he is extremely active (hockey and lacrosse) although it is a bit painful to look at those flat feet!)

We have a good foot surgeon who specializes in pediatrics... the plan is to have both feet operated on this year...  first foot is scheduled for February 9... resection of coalition, lengthening of calf tendon and possible lengthening of heal bone. Our goal is fix this completely.... but boy it is hard to accept putting my little guy through this...

Hope your kids are doing well!

[marimorr]

 I wish I found this site before... it would have been great to hear from others, too.

My son had surgery for calcaneonavicular tarsal coalition in November.  He had the surgery done in his right foot and will have the left done in the spring.  He is 11 and is very active in football and other sports.  I had to pull him out because the pain was so bad before he was diagnosed. 

He was originally told by a horrible podiatrist that his problem was flat feet and that he should be fine.  This went on for 2 years and he had custom orthotics. 

I finally got a second opinion and confirmed that something was indeed wrong with his feet.  Poor kid had been playing in pain for 3 years!

The surgery went well for the first foot.  He was on crutches and a cast for about 4 weeks and used crutches for another week. He is still walking with a bit of a limp, but he says the operated one is now his good foot.  The other one bothers him now!  So far I think it was a great decision.  We found a doctor that we trust and he can't wait to get the other one done! He is glad he did the surgery and can totally feel the difference.

[Tina Jurva]

I was researcing and found this site. My daughter could not walk for 4 months because of pain. We exhausted every docotor and settled on "chronic pain". She is now going through some tuff physical theapy to get her muscle tone back. We went to the hospital after Christmas to get all the doctors together and on board and to agree on one thing.

We did a follow up on Tue with a rheumatologist who found she had VERY flat feet and to go to a podiatrist.  Well, now after 4 LONG months he has a strong suspision she has tarsal coalition.

I should have guessed because I have it as does my son. He is 18 and it has never bothered him~ lucky boy. They found his by acident during a sprain incident.

I am glad to read all your thoughts and would like some more and up dates. She is in so much pain and I am conflicted.

Mine never hurt but had surgery to poss. relieve the flat foot.

[blnapril29]

So glad to hear that surgery went well for your son.  My son is scheduled for his first foot in 2 weeks... I am playing it cool with him, but I am getting nervous!  If he were in pain, it would be easier to justify this...but he feels nothing.  I do know that won't last...so I know we are doing the right thing... it is just so hard!

Can I ask some questions about the surgery... ?how long did it take   ?was there a lot of pain post-op   ?what about physical therapy....was it tough?

thanks for sharing your story!

[ljc]

Hi Everyone - I don't check in often - very surprised to see a bunch of new folks on the thread.  

My 8 year old son had surgery December 21 - so 7 weeks ago now.  To answer some of the above questions.  Surgery was aproximately 2 1/2 hours.  He didn't complain of much pain.  The worst part of the entire ordeal was his vomiting and nausea after surgery.  He was so hungry - but so sick.  

He had already learned how to walk on crutches (due to ankle injury last spring) - so he did fine on those and had all of Christmas break to recuperate before returning to school.  Both his Dad and I are Physical Therapists so we are doing the therapy at home.  He recovered his flexibility quickly and now we are working on strength and balance.  He still runs with a limp and will at times walk with a limp too.  There is still some swelling.  

I can't wait to see him walk and run without a limp.   

[marimorr]

Binapril 29- Hope your son's surgery went well.  My son's took about 2 1/2 hours.  Pain after surgery wasn't too bad.  He had pain pills to help. He was in a cast and he had to have it changed and looked at every week.  I think he went through 4 of them.  He had a button attached to the bottom of his foot holding the muscles in place in his foot. When that was ready to fall off, he was able to remove the cast.

 He went right into a regular shoe and was so excited that he did too much and his ankle swelled up a bit.  He had to miss another week of school due to the pain.  My advice to you is when he gets the cast taken off, take it slowly. 

He was much better after that.  He has no pain with his fixed foot and the other one is scheduled in April.

He didn't do physical therapy.  I was surpised, but the doctor said he didn't need it. 

My son can't wait to get the other one done. We are hopeful that his feet won't hurt anymore.

I hope this helps.

[Lynn Russell]

I am glad to have found this! My son has just been diagnosed with tarsal coalition after months of pain. He has severely pronated flat feet and now cannot move his one foot side to side and is in extreme pain. He also has Osgood-Slaughter's disease in that knee. He has grown very fast and is 13 and 6 feet tall with size 13 feet and still has growing to do!! I am working with an orthopedic surgeon who has never seen this before and is trying to find a specialist who has. I live in BC, Canada and hope we don't have to travel too far or wait too long. He is a very active kid involved in sports and his passion is Taekwondo. I am not sure where to look to find a specialist who can correct this and would be grateful for any advice.

Thanks!!

[Lynn Russell]

I am glad to have found this! My son has just been diagnosed with tarsal coalition after months of pain. He has severely pronated flat feet and now cannot move his one foot side to side and is in extreme pain. He also has Osgood-Slaughter's disease in that knee. He has grown very fast and is 13 and 6 feet tall with size 13 feet and still has growing to do!! I am working with an orthopedic surgeon who has never seen this before and is trying to find a specialist who has. I live in BC, Canada and hope we don't have to travel too far or wait too long. He is a very active kid involved in sports and his passion is Taekwondo. I am not sure where to look to find a specialist who can correct this and would be grateful for any advice.

Thanks!!

[blnapril29]

My son's surgery had to be postponed... he had a the cough and cold that is going around and he had too much chest congestion for "elective" surgery... he is all cleared up and is scheduled for tomorrow (Feb 22)....

Thanks for the posts about post-op... they made me feel a lot better (I had visions of him being in terrible pain)...

I will let you all know how it goes.

[ljc]

thinking of you and your son today blnapril29 

[ljc]

Lynn - I hope you are able to find someone close by that is experienced in repairing coalitions - i am sorry i have no suggestions - we are on the east coast and had surgery at Boston 

Childrens Hospital.  Take the time to find an experienced surgeon - it can make all the difference.  Good luck.