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#1 of 45 Old 07-17-2011, 11:53 PM - Thread Starter
 
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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 Loveheartbeat.gif

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#2 of 45 Old 08-04-2011, 03:18 PM
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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

 

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#3 of 45 Old 08-04-2011, 08:32 PM - Thread Starter
 
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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

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#4 of 45 Old 08-07-2011, 11:32 AM - Thread Starter
 
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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

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#5 of 45 Old 08-09-2011, 04:14 PM
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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 

 

 

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#6 of 45 Old 08-13-2011, 12:09 PM - Thread Starter
 
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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

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#7 of 45 Old 08-17-2011, 11:52 AM
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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!

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#8 of 45 Old 08-31-2011, 03:30 PM - Thread Starter
 
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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

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#9 of 45 Old 09-03-2011, 03:47 AM
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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

 

 

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#10 of 45 Old 01-01-2012, 01:29 PM
 
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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!

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#11 of 45 Old 01-02-2012, 08:44 PM
 
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 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.

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#12 of 45 Old 01-20-2012, 07:03 PM
 
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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.

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#13 of 45 Old 01-23-2012, 12:48 PM
 
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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!

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#14 of 45 Old 02-08-2012, 09:55 AM
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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.   

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#15 of 45 Old 02-17-2012, 06:32 PM
 
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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.

 

 

 

 

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#16 of 45 Old 02-20-2012, 12:14 PM
 
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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!!

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#17 of 45 Old 02-20-2012, 12:19 PM
 
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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!!

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#18 of 45 Old 02-22-2012, 07:16 AM
 
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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.

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#19 of 45 Old 02-22-2012, 09:58 AM
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thinking of you and your son today blnapril29 

 

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#20 of 45 Old 02-22-2012, 10:03 AM
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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.

 

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#21 of 45 Old 02-22-2012, 08:28 PM
 
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Thanks so much. We just got word that a Dr is going to review my sons case and he is only 4 hours away. My only worry is that I need to know that he is THE ONE that will be right for this surgery. How did you come to get your dr? A referral? Do you know if there is any way for me to find out about this dr and see if he is any good?? Thanks again.

I wish good luck to the other kids going through this and their parents. Its so tough when you see your child in pain and cannot help them. Good luck to all!!!

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#22 of 45 Old 02-25-2012, 10:53 AM
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Quote:
Originally Posted by Lynn Russell View Post
. How did you come to get your dr? A referral? Do you know if there is any way for me to find out about this dr and see if he is any good?? Thanks again.

 

Lynn- so happy to hear that you have a lead on a doctor.  We are very fortunate to live only 75 miles from a top Children's Hospital.  We worked our way from a local orthopedist to a lower extremity specialist at Children's Hospital and eventually on to Dr Spencer.  She was one of the two MD's at Children's that specialized in feet.  Much of her practice involved reconstructing severely deformed feet.  So I felt confident that this was a "simple procedure" for her.  I am glad we chose her because once they got into  surgery they saw a much larger coalition than had been visualized on CTScan and my son had an "extra" muscle in his foot that had also started to scar down in the area.  So she was able to handle all that - we ended up with a scar that was larger than expected - but we are doing great now.

I am a physical therapist - so I know from my own work that the skill of the surgeon can play a big roll in outcomes.  There is actually research out now that outcomes are better when the surgeon has performed the procedure at least 80 times.  (not on coalition excision specifically - but hip and knee surgeries).  So one question you might ask is how often the MD performs this procedure.  You might also ask if there were other parents who's children have had the surgery that are willing to speak to you.  I am not sure about outcome studies in Canada.

Now with all that said - I believe in mothers intuition.  So most important go with your gut.
 

 

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#23 of 45 Old 03-04-2012, 11:28 AM
 
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Thank you so much for the advice, I will keep you posted.

 

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#24 of 45 Old 04-09-2012, 03:34 PM
 
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Hi, I just found this site and everyone's posts were very informative. I am a 45 year-old female and I was recently diagnosed with Calcaneonavicular Coalition in my left foot by CT. It is indeed a childhood problem as I feel I must have been born with this but the injury to my ankle 6months ago brought this condition to the forefront. I am concerned as I think that this resection may turn into a fusion. Everything I have been reading indicates that the older you are increases the chances that arthritis has set in requiring a fusion.  I had been in so much pain that I required a pain block in early March and unfortunately, it only lasted 3 days shy of a month. I am waiting for my call for the surgery. I will be seeing my Orthopedic Surgeon next week and I will discuss all the details during the visit. Wish me luck....

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#25 of 45 Old 04-11-2012, 04:15 PM
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good luck pmcpx4!

It is my understanding that is it best fixed when you are younger.  I will keep my fingers crossed that you find some resolution to your pain.  

 

 

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#26 of 45 Old 04-13-2012, 07:32 AM
 
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My son was recently diagnosed with calcaneonavicular coalition in both feet and we were thinking about having them both done at the same time so that he did not have to go through recovery twice.  Would you say, as a PT, that this would be a good idea or not.  He actually wants to get the surgery done and them go right back to school but, since the school year is almost over, I think he should wait the few more weeks. I think he just wants his friends to sign his cast lol.  Do you think it is possible to go back to school shortly after?

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#27 of 45 Old 04-13-2012, 12:51 PM
 
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Thank you ljc, I am scheduled April 24th, so much to do to prepare for post surgery and have so much more to do, my son graduates from High school in June, just hope I am mobile by then. Keeping my fingers crossed.

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#28 of 45 Old 04-16-2012, 04:31 PM
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Hmm - to do one or both at the same time - tuff question???  Will the MD do both at same time?  Our protocol was to be non - weight bearing for 4 weeks.  With both at same time this would mean wheelchair for a month - so you have to think of your set up at home/school etc.   I think this would be hard on a kid - not that 2 back to back surgeries are not.  We only had to do one foot to do - so I've never thought about both at the same time.  

As for school my son took a week off - we did it over vacation.  I think in lots of ways doing it during the school year was easier - lots of sitting in class - riding the elevator - friends signing cast.  We are very active and outdoorsy - live at the beach - summer would be more of a hardship for my son.  

On a positive note - It was done late December and today I watched him run bases at baseball as if it never happened.  In fact better than he has ever run:)

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#29 of 45 Old 07-10-2012, 12:36 AM
 
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I am so thankful that I found this thread. My son was diagnosed with tarsal coalition in both feet 6 yrs ago. He has had two surgeries on both feet and more cortisone shots than I can count. He was pain free for almost 10 months. In Feb of this yr his right foot started giving him trouble again and has progressively gotten worse. He has had cortisone shots in that foot 3 times in the last 4 months that have not done anything for the pain. The Dr has done XRays several times and assures us that the surgery sites are doing very well. He has scheduled a MRI for this Thurs to see if that will show him something he may be missing. My son is now in so much pain he is back in his wheelchair. He graduated this year and is starting to college in the Fall. We were hoping this would all be behind him by the time he started to college. I feel so helpless. I have never met anyone else with this problem. Even though we have been dealing with it for so long I still don't understand it. I don't understand why there is not more that can be done for it. I am very interested to know if anyone's child has been pain free for any length of time after surgery.

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#30 of 45 Old 07-12-2012, 10:52 AM
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dfk1 - so sorry you are dealing with this - it's terrible to feel like you can't make things better for your son.  my son is still doing great (ie no pain) surgery was in December.  my son is quite a bit younger (8 years old).  i feel lucky that we found his coalition accidently when he injured his foot.  and we were able to fix it early on in his life.  

my son had negative xrays and then an MRI that found the coalition.  but my understanding is that the best way to look at things is with a CTScan.  do you feel comfortable with your MD?  don't be afraid to get a second opinion.  we saw an amazing MD at Childrens Hospital Boston.  I'm not sure where you live - but take the time to find the best MD you can.  

i wouldn't keep injecting his feet if he is getting minimal to no relief - but you might consider custom orthoics to support his arches, wearing good supportive shoes, keeping body weight low, etc.

i hope you find the answers you are looking for soon.  best of luck.

ljc is offline  
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