ask: Living with an ankle fusion and subtalar fusion--Any advice?

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In January of 2009, I fell from a ladder and suffered a catastrophic open-bone fracture of my talus. Not only was the talus shattered, but I immediately developed a serious infection and subsequent deep wound. 9 surgeries, 8 months of IV antibiotics, 9 months on a VAC device, and 15 months of walking in a boot, later . . . I am now looking at life following a complete ankle and subtalar fusion (no part of my ankle moves--except my toes). I am overjoyed that my fusion surgery was successful and am looking forward to learning how to walk again! I was just given the go-ahead from my doctor to begin using MBT shoes and to start physical therapy. I am just wondering if others have walked this road before and have any advice or insight. Thanks so much. Anneh8sldrs (Anne hates ladders)

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EmpowHER Guest

I am a physical Therapist, 37 years of experience so I have seen a lot and often think about what I would do if i were in my patient's shoes. If the ankle fusion fails as so many above have described, then go for a below knee amputation and start fresh again.

you should be walking within 6 to 8 weeks, may have phantom pain to deal with for a while.

on the other hand, many people have good results, but you will not see them on these posts as they are not looking for answers on the problems or issues with their fusion.

in regards to pain control, this is most important to have during rehab because it frees your brain from guarding yourself all of the time, lets you get on with life and when your brain sees that you are normalizing your day to day activities, the brain will no longer need to hurt you as your body become's more functional

equally, depression etc will alter your perception of pain.

i work with the most severely developmental disabled individuals who come to the operating table with no emotional bagage and wake up after surgery and do even better than most so call normal people. For the most part, their original pain is gone, and they are supported with post op pain control and most of my work involves slowing them down and keeping them safe from themselves.

i stumbled on this site looking for pictures to show the group home staff what joints are fused in a total ankle fusion. '

i have a fellow, with Downs syndrome whose ankle is in cage and another fellow who is going to have an ankle fusion next week.

we will take them to the pool and play as soon as we get the go ahead from the surgeon.

i anticipate good results.

yves from Alberta Canada

February 27, 2015 - 2:31pm
EmpowHER Guest
Anonymous (reply to Anonymous)

People like you get to me you don't know the pain. Doctors say the pain is all in your head. I had an ankle fusion 20 months ago and I am still in pain. I am a single mother that has to work to support my kids. I come home and cry because of all the pain I'm in. I've had a MRI EMG because they assumed it was nerve damage and it came back OK. Perocet is the only thing thats helped me so far. I've been on 5 different nerve medicine and nothing has helped. I've had Tramadol didn't help with my pain. Until you have an ankle fusion you can't say what someone can and will feel.

March 9, 2015 - 10:12pm
CarolDV (reply to Anonymous)

Anonymous - can you please share some information with me about ankle fusion? I have had ankle surgery and my ankle has so much arthritis I have constant pain. My doctor said that with the way that my foot turns out, I am really not a good candidate for ankle replacement. He said I have have to have one surgery to straighten it out (which is what my pervious surgery was supposed to do), and then when they heals, I would need the replacement. He said with fusion, I would not have the pain because my ankle would not be bone on bone. Is there anyone out there that can share some experiences with me? Thanks!

March 28, 2015 - 4:48pm
EmpowHER Guest
Anonymous (reply to CarolDV)

Hi.... I had a partial fusion a year ago in Aug. Because my left foot was also turned out. I as well was bone on bone. I am going back to the dDr on Mon may 18 to see about a full fusion in my case ankle was so messed up turned out and crooked, bone on bone, my Dr said we would try this first. With a full replacement. Those only last 10 years. Something to to think about. My recovery from partial fusion has taken a year. They cut my achilies tendon too. and cut and moved another one, but anyway. im glad i did it. i will do ot again too. i hope this helps you.

May 16, 2015 - 1:26pm
EmpowHER Guest

I had my left ankle fused do to arthritis and heavy damage to my soft tissue after numerous sports injuries and ankle reconstructions. A also have had numerous surgeries to my right ankle 8 in total. One was to take the hardware out of both ankles and 3 were to deal with a pesky nerve that they eventually just killed. I'm am 3 years into my ankle fusion and am 50/50 like it hate it. I am able to work out everyday but it hurts constantly although it is much better than it was post fusion. The last year I was told by my surgeon to cut out any sports that I have to run because of the stress on the soft tissue from the impact of not having an ankle joint. My knees and hips are a little sore but I do work them out everyday I know that if I didn't I would be a mess right now. I can no longer do the job I used to do as it was to hard on my ankles it was oil field work so pretty heavy work but I can no longer work any jobs where I am on my feet for more than a couple hours a day. My life has been flipped upside since I was so active it is a hard adjustment but I was fortunate to have my first daughter in the middle of all of it which I think if that didn't happen I would be in a very deep depression. I am in therapy for depression right now have been for a year related to my injuries and change of lifestyle so yes mental help is needed. I do not take any pills for pain or pills for my depression. Only thing you can do is talk about your problems mentally and for pain I just elevate it whenever I can and ice it daily. All in all it is better than it was pre fusion but it is still painful and will give you limitations just wonder if there will ever be a better option for severe ankle injuries as I am not happy with my fusion. Also be prepared for mental issues two years I went without dealing with it mentally and have since developed agoraphobia anxiety due to OCD and depression it is a shock to your body and brain.

February 20, 2015 - 7:16pm
EmpowHER Guest

On September, 2013 I fell from 3 story roof, (over 48 ft) and landed on my feet, shattering both heels, ankles and broke my back in 4 places. Since I was an occasional smoker surgeons refused to do surgery saying wounds will not heal so I had to quit smoking and wait several months. I finally had subtalar fusion on right foot on May 5, 2014 and left foot on June 25, 2014. Started PT mid August 3x a week until end of December. I'm experiencing so much pain in both ankles I still can't walk unassisted or even with a cane. My balance sucks, I can only walk a few feet before I have to sit. I was a gymnastics instructor at the time of my fall and have always been very active but now can't even walk to the bathroom without crying due to the pain. I don't take any pain medication, I'm afraid of becoming dependent on them. When I asked my Dr how long until I'll walk pain free his response was "NEVER". WTF, is this as good as its gonna get? It's been 8 months since my last surgery, thought I'd be walking by now. Can anyone who has had similar injuries and surgeries please tell me if I'll ever walk normally again or at least without severe pain and if so, WHEN?!?! I want my life back! I'm divorced and have no children and live in the boonies so dealing with this alone is extremely difficult. Not sure what's worse, the pain or the depression.

Shattered in Louisiana

February 18, 2015 - 7:50am
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi, I pulverized my calcaneal bone on my right foot 20 years ago. During those years the arthritis was horrible and I lived on ibuprophin. From the ibuprophen I developed a bleeding ulcer and have recently had the fusion surgery. Your foot will never be the same so watch your weight, this is hard when you cannot exercise much, so eat healthy, low fat, low carb, high protein. Go to a pain doctor and get medication, you will have a better quality of life and get a disabled parking card, you need it. Also a recumbent exercise bike, pool and hot tub will help keep you healthy. Get a script from your doctor for the hot tub, you will be able to deduct all of it, good luck, Karen

May 8, 2015 - 10:20am
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Shattered in Louisiana,
I'm sorry to hear your story. You are not alone.
Firstly, you must bring your pain under control. Doing this without medication is not advisable and may bring you additional chronic pain issues such as CRPS. Seek out a pain specialist (or even local GP). They will assist with more than simple pain medications.
Secondly, find counseling. Many on this site have attested to the need for professional support for depression. It just comes with long term recovery.
Finally, physical therapy is important at getting you through this stage AND for long term management of strength, gait, etc.
Good luck and take it one day at a time.
Happy Ankles

February 18, 2015 - 9:08am
Shattered in Louisiana (reply to Anonymous)

Thank you for your words of encouragement and advise. Since I was self employed at the time of my accident and haven't been able to work since, I was living off my savings which recently ran dry so the bank repo'ed my car 2 weeks ago. Now I have no transportation which makes things even worse. I can't even get to the end of my driveway to check my mail so I have no way to get to counseling even if I could afford it. I'm still trying to figure out how I'm going to do my grocery shopping without a vehicle. Luckily my freezer was stocked so I have a few more weeks to figure something out. I've tried to find agencies in my area for assistance but have come up empty, there just isn't any help way out here.

Shattered in Louisiana

February 18, 2015 - 10:05am
EmpowHER Guest
Anonymous (reply to Shattered in Louisiana)

It's going to be okay. Start with a "2 day pain break". Take medications for 2 days to relieve pain and give your nervous system a break. Then don't give up on reaching out to community assistance. Could you call your local GP who perhaps could direct you to other resources?
Good luck,
Happy Ankles

February 18, 2015 - 10:26am
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