Tuesday, May 7, 2013

Tarsal Coalition – The Silent Disability

When we think of disabilities, we think of people in wheelchairs, or people needing a crutch or cane to get around, but I have learned over the past few years that many people out there are suffering from silent disabilities. This includes those suffering from back pain, nerve disorders, and in my case, tarsal coalition. Anyone inflicted with these conditions looks perfectly normal to others. This creates its own challenge, as it makes explaining the situation more difficult.

After each of my surgeries, I had a slight limp for the first few weeks of weight bearing. Inevitably, the limp would gradually go away, and people would make comments such as "you are walking so great" or "glad to see you recovering." These statements were always well intentioned, but acted like another stab to my already unstable emotional state as in each case, my pain level remained the same. People expect that with a foot injury, you have surgery, use crutches for a few weeks, and are back to normal before you know it. I have realized that it is virtually impossible for people to comprehend that there is not a cure for every foot/bone disorder.

Sometimes, I think it's easier to make it through social situations when I use crutches or am in a walking boot. It acts as a signal to others that I am not able to stand on my feet for very long and people actively work to make you more comfortable.  In many ways, being on crutches comes with perks similar to pregnancy J. When I am not using crutches, on the other hand, people give me strange looks when I wear tennis shoes with dress clothes, or sit down when everyone else is standing. Sometimes it is exhausting to explain over and over again that I simply can't stand for more than a few minutes.

At the same time, if there is one thing I have learned over the past two years, it is that people are good and kind. They want to know if you are suffering and want to do whatever little bit they can do to ease the pain. This has taught me to know how to ask for help and when to speak up when I need to sit down. It may be awkward for me, and it may feel like everyone is staring, but in the end, friends and family want us to be as comfortable as possible.

19 comments:

  1. My son suffers with this in both feet he is 20 had as it since he was little but just been told its this when he is struggling with working as he can not stand for long but was tild its not a disability and he would have to work full time he is in so much pain he wantsbto work but he keeps telling thwm he needs a sit down job but they said he is young so it can not be that bad I do really feel sorry for him as thenpain gets really bad

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    1. I have this as well. I'm on my feet all day as a pharmacy tech. I've had two resections done on my left ankle and was months away from doing the ever so dreaded fusion! Finally I found a new dr who was willing to help with my pain. I went from limping within the hour of working then going home barely getting out of my car using a cane until I got inside. Then I used a roll-a-bout which set me back a couple hundred dollars. But i needed anything to avoid pressure on my foot as I couldn't walk by the end of the day.

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    2. Finally my new dr gave me Cymbalta for the pain. It took about 6 weeks to notice a difference but it is dramatic. Its not a narcotic which most dr are very strict about giving to "young people". I haven't had to use my cane or roll-a-bout for a couple months. Basically since the 6th week of using Cymbalta.

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    3. Cymbslta? Really? I'm goin to research n talk to my Dr! II hur so much I feel weird when I don't hurt constant ache. Sucks. Thank for sdvice

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  2. Just wanted to share link to a Facebook group for folks with tarsal coalitions...https://www.facebook.com/groups/120464547046/

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  3. This made me cry. I've never related so much to any article. I've struggled with this my whole life. I'm 30. I've had two surgeries including a fusion 9 years ago and I'm still in pain everyday. No one understands. I often think about using crutches when I go places just so people will let me sit down. 😢

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  4. Hey guys! So glad I found this blog! I am 22 and was 18 when I was finally diagnosed with Tarsal Coalition. My doctor won't even consider any surgery apart from the fusing of other bones in my foot. I walked with a stick for a few years, that allowed me to have a little extra freedom when out and about, but completely ruined my back. Anybody else get pain in their hips/lower back because of the limp? I recently invested in a lightweight manual wheelchair and I honestly cannot recommend it enough - I can actually get to the bus stop and go out with friends and family for an extended time - not been able to do that in 5 years! I've been struggling to find a form of exercise that doesn't aggravate my ankle, I was told swimming was good, but it just makes my feet cramp up. Any recommendations?

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  5. I was diagnosed at 9 years old. I had a resection that year. Fast forward, I am now 43 and in constant pain. I had a baby almost 2 years ago, That was the breaking point for my foot. I think the extra weight and stress on my foot did it in. I feel disabled . I cant stand or walk very long. Frustrated beyond belief. I have a baby I want to play with and the fusion is the only chance for a somewhat normal life. There is no way I can care for him and recover from such a big surgery. Any ideas to reduce pain? maybe some sort of brace to support my ankle?

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    1. I got a foot brace but it didn't work out. Foot still hurts n it swoll up.i did naproxen. Helps slightly. Patches around ankle was great. Cold but great n it's hard to get Dr to give lidocaine patches. They half way believe u hurt

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  6. I've had this pain for last 15 yes. Went to several drs, chiropractor, massuese, pt, lol everything!!! I tried one more place n was told I have this awful disease and yes people don't understand the pain especially if u were jus walking 5 min ago and now u can't stand. They don't get it. My ankle and Achilles tendon constantly ache. I can't sleep back n shoulders hurt. I work on concrete n it KILLS me but I need the money n insurance. I've tried everything! Is surgery worth it? So glad I'm not in this alone

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    1. Hi, i Just ran into this blog and my reply may be too late, but yes, surgery is totally worth it. At least it was for me. I had a bilateral coalition, causing me pain my entire life. The pain was getting intolerable and the damage on other joints was becoming so significant that 2 years ago, at 40,I decided to give the fusion a try. I was a DRASTIC improvement. Had a few complications (bendage too tight gave me an infection) but eventually everything was solved and foot is now great. I can finally walk and stand still. I just did surgery on my other foot and now I'm in the non weight bearing period. Hopefully I'll get the same results. So, in a nutshell: surgery help . At least it helped me. Good luck!!

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  7. I was diagnosed at the age of 8 with this mine gets bad enough where I have had to use a wheelchair at times my records never got transferred when I moved and my doctors just recently spotted it but also say now I arthritis in them as well I have it in both feet I've dealt with the pain and cramping and muscle spasms for so long I'm used to it but it is hard to explain to people because they see me and think I don't have a disability but I do trying to get my primary to send me to a specialist so I can get proper treatment for it now

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  8. I suffered for 20 years with tarsal coalition in both feet....I had my first subtalar fusion Dec 2017 for my right foot and my left subtler fusion Oct 2018...they were both a success and I can now walk, stand and work without pain. I was unable to walk after being on my feet 15-20 minutes. I was 17 when I noticed pain and swelling after working at my first job...after a week of working I was crawling around cuz I couldn't stand up without crying out in pain �� so frustrating and after seeing about a dozen different doctors and xray after xray I finally got answers.

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  9. I have just been diagnosed this year and i had hurt my foot during a basketball game but we could not figure out what had happend so i was on crutches for 6 1/2 months straight. This was a year ago and i am up almost everynight with chronic foot pain. Does anyone know what i could do to ease the pain?

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  10. Can you go to an orthopaedic surgeon who specialises in feet and ankles? They would be able to give you your options.

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  11. I was 20 and in the Army when I was diagnosed with Tarsal Coalition. I'm 43 now and I've never had surgery because I have had a decent tolerance for pain and if I can rest my right ankle, I'm eventually ok. I'm using Ibuprofen to deal with inflammation.

    But I should have taken care of this a long time ago. I only have a part time job, and before that, homeless for over a decade.

    I don't know what to do because I'm in more pain than ever. I'm too prideful to ask for help because in my experience, I've been let down and I never want to be a burden on anyone.

    But I'm getting weary. I hate going to work. I'm new so I can't take a day off because I won't get paid for it(I actually work 5 days a week though I'm PT) . Please help me!!!!

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  12. Wow. I feel relieved. Since I was probably 10, I have had horrible foot and ankle pain and my family didn’t believe me. I’d constantly cry and they thought I was over dramatic. When I turned 18 I took myself to an ortho surgeon and was diagnosed with tarsal coalition. I have felt so alone ever since. I still have to explain to friends why I can’t take walks or why I don’t go to amusement parks or concerts. Being on my feet is terrible. I have no gotten any surgery, my doctor told me it would not be worth it because the pain from arthritis will be the same after surgery. I have been looking for a community to connect with and help me deal with this daily struggle. Thank you everyone for telling your stories and letting me know I’m not alone.

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  13. I am just now seeing this as I was just diagnosed as was searching for info until I get into foot specialist..Im in so much pain and have to tape up my feet...just reading all the comments..thank you c.j.

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  14. I am just now coming across this blog. Guys I so understand the pain. I'm 25 but I was diagnosed 6 years ago.. and the crazy part is guess what job I do... Housekeeping like I can't seem to find other work so I am always in paid and don't let me start on sitting down after strenuous activity, it's merely impossible to walk like there's no absolutely no strength in the feet. And they're in BOTH feet. Ugh. I'm thankful though that they alternated haha

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