One of the biggest challenges for individuals with tarsal
coalition is maintaining a healthy lifestyle. Many of us were extremely active
prior to our diagnosis or injury. For me, I loved to run. Running was my escape
and a healthy way to get out my daily aggressions. One of the hardest parts of
my pain has been my inability to truly exercise. Since my initial injury, I
have been able to bike on a very limited basis. I was never a big biker, and it
has especially difficult because, due to pain, I can only bike for
a short period of time with little resistance. In reality, I went from being
an extremely active person to having to use a wheelchair at the grocery store.
The lack of activity has been a big struggle for me. Not only
do I feel blah and lazy most of the time, but I also lost my best method of stress
relief. At the time in my life when my stress levels are highest (also due to
the medical issues), I lost my only known method of dealing with stress.
Recently, I have discovered swimming. It has been the best
thing that has happened to me since the injury. Not only am I able to be active
and stay healthy, but I also have noticed that swimming is the only time of the
day when I really do not feel pain in my foot. I have heard that pools have healing
powers and now I must agree.
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I just came across your blog and I just want to say that I am so glad that there are people that can relate to the pain that I have.
ReplyDeleteI've never had any ankle pain up until I was 26 years old which was about about 3.5-4 years ago during my last deployment to Afghanistan. I was a medic in the Air Force and while deployed, I had 60+lbs of gear on me to protect me and help provide care if needed. I would jump out of vehicles that were 5 ft if not more off the ground with this gear on me. I also would run a couple of miles on rocky ground. I didn't think anything of it when I started to have pain - I ignored it and took my Vitamin M (Motrin 800mg) like the military advised. Once I got home I complained, but nothing was found on my x-ray and they said I had "overuse"..ha! overuse of your foot/ankle, seriously?!?! So I sucked it up some more until I seperated. I went to the VA - they didn't find anything on the x-ray. I went through my private insurance which referred me to a podiatrist who ordered a CT scan, hello boney fusion! I was diagnosed in 2011 with a tarsal coalition. I'm miserable. It's so bad that I can't walk around a store without wanting to sit down because the pain gets so bad. When I do walk around on the pain and go to rest, stepping off is probably some of the worst pain that I have ever experienced that it brings me to tears and words that aren't exactly appropriate for me to repeat. I was scheduled to have surgery for the end of June, but I am postponing it because my podiatrist at the VA recommends I try everything possible before going down the road for surgery. Apparently there are great risk factors for arthritis 10 years from now, other joint problems and who knows what else...but isn't that the case even if I don't have surgery? I am in a boot now, which causes pain in my back and hip because I'm lopsided. If I don't wear the boot I have constant pain, with no relief. I hate this so much that there are days where I seriously wish they'd just cut it off and give me a prosthetic. :( I can't exercise they way I would like too and honestly, I am to self-consceince to get into a swim suit and swim in a pool because of the weight gain I've acquired after seperating and not working out due to the pain.
How did you decide to have the surgeries that you had? Do you regret having them? What have you tried that has relieved some if any of your pain? I only have it in my left foot, or should I say as of right now my left foot is what is causing the problem. My right doesn't hurt at all.
Daniela, I am so happy that you found this blog and the facebook support group. So many of the things you said ring true to me. Especially your thoughts about wishing you could just cut your foot off. Do you find that standing is worse than walking for you? I also can't walk or stand for more than a few minutes without unbearable pain. It's extremely frustrating.
ReplyDeleteNone of my surgeries have brought relief, but I do not regret having them, because each of them were necessary. I am lucky in that I do not have arthritis, most of my pain comes from complications after a successful resection surgery.
I used to only have pain in my right foot, but after a year of compensating, my left one hurts too (but not nearly as bad).
I am happy to see you posted on the facebook support group, as many of those individuals have had fusion surgeries and may have better advice for you.
Take care!
Hi!!!
ReplyDeleteI have this as well and I am thrilled to find a site and someone who also is able to relate!
Thank you so much for this blog!
I have adopted swimming, and I do physical therapy with a theraband every single day in order to stregthen the surronding muscles. I used to have chronic, horrible pain, but I kept with physical therapy and it got so much better. They told me to do the exercises every other day (pulling your ankle side to side against resistance, email me if you have questions: meganweinand@gmail.com), but I started doing it every single day and it helped even more to do them more often.
I am able to lift weights, which I feel incredibley grateful for. I actually have sometimes been able to keep running - everyone is different, although I think I almost don't want to. I noticied I developed compensatory pain in my opposing leg ("non-coalition side), and I am sure it is secondary and a result of compensating for the weak left (coalition) side!
I am so grateful to be able to walk today without pain. I almost don't know how to explain why it got better, but I think it was resting it initially, doing PT every single day. Sometimes it acts up, but it improves if I take it easy. =)
Today I am able to walk, without much pain, although sometimes it feels "weird" or "uncomfortable". I am SO grateful for the ability to walk. In some ways this condition is a gift - I am grateful for and enjoy every step. I am more cognizant of disability - I think about how "walking" activities should be pre-asked about; we can't assume everyone has the same ability. Also, as horrible as it sounds, realizing that people who aren't active are not necessarily lazy - I LOVED running, and still love being active. I wish I could do everything! I wish I could run for hours and hours like I used to. We never know where anyone is coming from.
Also, my role model, Frida Kahlo, had a left foot pain/inmobility from polio, and then her accident, and so in that way I sort of channel her sometimes! She was a very strong and successful woman and many people believe her alter-abled status allowed her to succeed in diverse and creative ways by being stationary, therefore being able to focus on art.
I have only seen one doctor in my life for this who knew about coalitions - but he really rushed my apppointent, so now .5 year later I am going to try and get a second opinion. A MRI confirmed the diagnosis - you really can't diagnosis it any other way. It started when I got to the "bone-solidying age" (early 20s), but also I believe because I was running many miles and training for a half marathon.
I can report back what the 2nd doctor says, and how I continue on - again, one day I'd love to be able to run for long times, but I get scared from stories I hear about people getting worse, and I wouldn't want to get worse.
Also, I have heard from some that the 5-finger Vibram shoes helped? But then a personal trainer at a gym once saw me with Keds shoes and said, "oh trying to streghten your ankle?" So I am torn between using tennis shoes vs. Keds, because tennis shoes would give you the least stress on your coalition, BUT, wouldn't Keds help you stregthen all those muscles? What do people think? Is there a coalition expert in the podiatry/medical field anywhere who might know these things? I can ask my own doctor and report back! =)
Hope to hear back from others, again please email me if you want to keep talking about this, and I will try and follow any new posts here!
-Megan
meganrw@bu.edu
Thanks so much for your comments, Megan! I am so happy to hear that you have had good luck in staying active. I absolutely encourage you to get a second opinion (and third and fourth!). I found that I wasn't satisfied until I went to Mayo Clinic in Rochester, MN. Now I finally feel like I can let go and move on with my life (and keep moving!).
ReplyDeleteBest of luck to you.
The only exercise I've found I can do, is the recumbent bike ( the reclined position doesn't really bend the ankle) but swimming causes me a lot of pain - foot cramps in both feet, and the resistance from the water pushes my foot into an angle it cant naturally maintain anymore - which is a shame as I used to swim regularly
ReplyDeleteHi, I've just found your blog. I used to swim competitively before I was diagnosed but since then it hurts too much to do so. I swim normally and still try to dive and I walk a lot which causes issues but I find it to ease stress. Other than that I can't really do much that doesn't hurt my foot.
ReplyDelete22 years ago I started a new job which most of the day was spent on my feet. I started experiencing extreme pain in my right foot ( to the point where I had to literally crawl up/down the steps when I got home ) Over the years the pain progressed to the point that when I got out of bed in the morning I would have to hold onto ( bureaus ect ) to make my way around the house. ( I had orthotics throughout all this ) Eventually I couldn't take it anymore ( tired of using wraps, ice, heat , basically anything that MIGHT relieve the pain) I finally went to a Doctor who referred me to a Specialist. After about 6 months I finally got in to see him ( which is a miracle in itself in Canada ) He tried the cortisone ( which didn't work ) . So from there he referred me to a surgeon ( took about a year to get in to see him ) He did every test known to mankind relating to this and finally ( after another 6 months ) booked me for a coalition fusion. So fast forward 18 months and I am officially booked for surgery on Dec 3, 2018. One week from tomorrow I will go under the knife. Boy oh boy I am nervous but happy at the same time. I will hopefully be able to walk up and down stairs without the fear of my ankle "catching" and pitching me down them face first. Maybe I'll finally be able to walk without pain? I don't know. But I am more than willing to find out :D
ReplyDeleteIts been 17 days since my surgery. The surgery was a few hours long and I stayed overnight in the hospital . I had a pain blocker inserted in my leg before the surgery, which came home with me for pain management. It was pretty cool and was pain free for three days until it was empty. I had to remove the catheter ( is what they call it ) myself. Pretty simple and not felt it at all.That night once the blocker run it's course ( the blocker is the same thing that the dentist uses to freeze your mouth ) I was in severe pain. I had a prescription of dilauded and that really didn't do shit for me. I still don't understand how people become addicted to it. Now 6 days after surgery I had to go to emerg for a cast change because the cast was rubbing up against the stitches and really was hurting ( it will loosen up ) . The very next day my 15 lb cat jumped on my ankle and oh my lord the pain was something else. First time I cried throughout all this. I called my surgeon's office and they had me come in the next day. All was well so they put a fiberglass cast on ( Red for Christmas ! ) and sent me on my merry way. Oh and my foot was swollen so he didn't remove the stitches and will do so on Jan 8th. But not before he told me to put my cat on a diet LOL. I am part of a research project for ankle fusion for artificial bone graft instead of bone graft from my own body. I have 2 pins in my ankle. one going horizontally and the other is vertical ( like an upside down T ) lets hope my body don't reject any of it. One good thing that come from this so far is I haven't had a cigarette in 18 days ! Yay me !. My home is a 4 level split and I purchased a walker ( you will not regret it, also you can rent them ) Crutches to go up and down the stairs ( do not attempt this on your own because it's more difficult than you think it is ) Always have someone with you when using the crutches on stairs. I did fall up the stairs lol. Luckily I didn't hurt my foot. Also I bought a knee scooter and I LOVE it. It's great for going to the mall or even out and about in the neighborhood .Now for bathing/showering I did purchase a tub seat with the back on it because it's wider and sturdier and I can swing my body around easier. I put a towel on the seat ( hand towel ) to keep me from slipping and so it's not really cold on the bum ( lol ) Then I have a footstool outside the tub with a pillow on it to rest my foot. My shower head is removeable and its easy for me to have a shower this way . My husband will get everything ready and close at hand for me . It feels so good to be able to have that bit of independence . I tell you all this so maybe it will be a little easier for you to figure out how to manage after surgery. To be honest I'm not even sure if anyone still looks at this blog or not but in case I'm wrong I'd like for you to at least have some guidance . I will check back in after my appt in January ! PS I am also the anonymous above !
ReplyDeleteI am so happy to find other people with this diagnosis. I've had terrible pain in my feet and ankles since age 16. I'm 42 and just got diagnosed yesterday. I got emotional when my doctor told me and I wasn't sure why I had that reaction. After reading these posts I realized that I felt validated when I was diagnosed. I've been seeing doctors for my ankles for over 20 years. The pain is unreal and I was put in physical therapy and given pain pills??? 20 years? How did this get missed for that long? I was treated like a drug seeker even though I despise pain medication so much that I refused to go to a pain clinic and I have never upped my dose since the original perscription. It's like they just didn't look at the over 20 Xrays over my life? My multiple breaks/ fractures and sprains? I'm still figuring it out and my appointment with the orthopedic surgeon is this Thursday. Any suggestions on questions I should ask or treatments I should look into?
ReplyDeleteI surely acquiring more difficulties fr foot doctor
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