tarsal coalition - Page 2

[Lynn Russell]

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!!!

[ljc]

Originally Posted by Lynn Russell 
. 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.
 

[Lynn Russell]

Thank you so much for the advice, I will keep you posted.

[pmcpx4]

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....

[ljc]

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.  

[talullah]

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?

[pmcpx4]

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.

[ljc]

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:)

[dfk1]

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.

[ljc]

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.

[msgo]

So glad to have found this thread. We noticed in kindergarten that my son walked and ran differently but were put off on it until age 9.  He has pain when running, or jumping, occasional spasms, but no limping or constant pain.  Our 1st opinion doc did x-rays and said no problems, wear inserts.  After a year, we've gotten a 2nd opinion and this doctor says from x-ray he suspects coalition.  We had the MRI and I was able to pick up our results today.  It just says No Abnormalities demonstrated.  I am confused as to how X-ray could show a coalition but MRI not show it??  I am frustrated.  Were your children's coalitions diagnosed by XR or MRI?  Of course, the foot doctor may read the MRI himself before our appointment next week, and I thought maybe he wanted to MRI to check the ligaments more than the bones... I don't know.  I would just love a clear answer so we can get this resolved.  What would you do?  Thanks

[ljc]

We were diagnosed with MRI.  My son later needed a CTScan - I was told this was the best way to see it.  After surgery we were told the coalition was even bigger than the CTScan showed.  My son was age 7 at the time.  His coalition was fibrocartilage when diagnosed.  I suspect it would have ossified as he aged and would have been better visible on XRay.  XRay shows bone.  MRI does show the ligaments and tendons, but also cartilage.  CTScan is not with risk/radiation exposure.  

You will know more when the MD reads the MRI.  I would make sure you consult with a pediatric ortho MD.  When you say foot doctor you don't mean podiatrist do you?  

[blnapril29]

I can greatly appreciate what you (and others reading this thread) are going through...

I am certainly no expert but am happy to share my son's story...maybe it will help someone: 

My son is very active - has been playing ice hockey since age 5... and baseball/lacrosse during off season.

Spring/Summer of 2011 started to notice very flat, turned-out feet in my then-10year old son. Never any pain, no sprains....just flat, splayed out feet

Brought him to doctor in the Fall- thinking he would be getting orthotics....doc sent us for MRI ...diagnosis T-C coalition in both feet (not yet ossified, no arthritis)... 

Doc recommended surgery...and after exhaustive research, I agreed... the coalition was obvious..

First foot was operated on Feb 23, 2012  Post -op course of treatment: 5 weeks in a non-weight bearing cast followed by about 2 weeks in a walking boot.  PT began when out of cast.... 

Second surgery was done June 1, 2012... same post-op plan.

We were VERY careful after surgery - very little movement (he slept on couch so he would not have to go up stairs at all for the first week, used a wheel chair so there was no chance of slipping with crutches, even used a hospital potty so he would not go all the way to the bathroom .... fortunately, we home-school, so he was able to keep up  with school work right from the couch).....

We were told to expect some pain after surgery...but there was very little - my son did not take any pain med's post op (again - he really did not move much at all...but we wanted to do everything we could to avoid needing pain meds)...the only time he took the Rx motrin was before he went in to have the cast and stitches removed at 3 weeks post op..

He is now at 25 weeks since the first surgery and is doing great.... PT is just about over... still walking a bit stiffly, but no pain...he was outside playing basketball with his friend today!   He will be back on the ice in about a week.

I told the doctor when this started that he had 26 weeks to fix my son's feet...and we have just about made it!

Hope this helps!  Good luck!

[msgo]

Yes, this was a regular podiatrist we saw.  I am taking him to see a pediatric ortho doctor too, but we have not had that appointment yet.  We started with podiatry at our pediatrician's recommendation.  The MRI reading came back normal in every way, which doesn't make any sense to me, since obviously something isn't right with his feet, unless maybe something is off higher up, like hips or knees.  The podiatrist recommended orthotic shoes for a few years, then re-evaluate.  I want him to be able to run and play, so waiting a few years isn't really what I wanted to hear, since we told that when he was in kindergarten and he hasn't gotten better.  I wasn't sure how far we'd have to travel to see a pediatric doctor, but I found one pretty close!  Hoping to get in to see him next week. I'll update then!  Do you think they will re-read his XR and MRI or order more tests, or what?

[ljc]

msgo - I hope you find the answers you are looking for - i assume the pedi ortho will be better able to answer your questions.  keep us posted.

[cindylew117]

Hi my son had been diagnosed with tarsal coalition at Mass General.  I'm really not happy with the direction they went in.  I am going to call Boston Children's but we have a short window since he is now 18,  and you can only go there till you are 19.  He is in so much pain, and it was discovered after he had to quit lacrosse, which he loves, now he works in retail, as well as attending his senior year in high school.  He is really active, and has a very high tolerance for pain.  I'm so nervous that he's messing up his body by continuing to shift his weight of his bad ankle.  Any suggestions on specific Dr's at Children's?  Thanks so much.  Also did any of your children walk later then usual.  My son didn't walk till he was 15 months.  I thought this was normal since he was the third, and my daughter carried him everywhere, now I wonder.

Cindy

[msgo]

I don't have any great advice on doctors, but I did want to respond.  I think at his age, a pediatric or regular orthopaedic surgeon would be fine though.  My son was not a late walker, but we also do not have a confirmed coalition diagnosis yet.  Best regards

[ljc]

Sorry I didn't see this sooner.  We saw Dr Spencer at Children's.  I can't say enough good about her.  Good Luck.  My son was not a late walker (10 months).  But always had a "funny" gait pattern when running.

[Lissy123]

Hi I looked online for 'supports groups' for people with Tarsal Coalition, and found this site. It's a mothering site but I have no children..I'm 19 and I was diagnosed with talocalcaneal tarsal coalition over the summer. It's weird that it would only start bothering me now, but it is what it is I suppose. I tried wearing an air cast and orthopedic inserts, even had laser therapy, but when I went back to college the distance I was walking stunted the recovery process. I started using a cane a week ago because of the pain..now I have a walking boot. I'm in PT for the ligaments on the bottom of the foot that is effected. My arch collasped causing the damage. I'm in pain all the time and can't take anything for it because the naxproxen I was taking gave me ulcers that I am now being treated for. I want to try all the conservative options first if anyone has suggestions for other treatments I could try please let me know :)

[ljc]

Lissy 123, 

So sorry you are having so much pain.  I can't think of any other conservative approaches.  Sounds like you have tried many.  My son did not have a positive response to conservative treatment.  With the exception of orthotics providing some pain relief.  He did have a positive response to surgery, but was much younger at the time.

Hope you find relief.

Laurie