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

By anneh8sldrs
 
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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
Anonymous

I was in a car accident 4/9/2011. I had a open fracture of tibia i started with 11pins and a plate all holding this together... About a month and a half later i experienced my first bone infection. They removed all my metal (screws &plate) n back into a cast i went. As I had a huge hole in my leg i had a skin graft in wound vac placed to help this heal. After it "healed" i had a small area that would bubble up then ooze icky stuff. Plastic surgeon wanted to go in and check it out ortho doc said no... 8 months later found 2nd bone infection. My bone was squishy so they cut out the 1 1/2 inches of my tibia and placed an Ilizorov external fixator. This slowly moved my tibia down to meet with my ankle to fuse all while growing new bone at top of tibia. I wore the fixator for 18 long months. Now they say after almost 4 years of fighting to keep my foot that it is all healed however now i have pain in my subtalar joint. Still on 2 crutches doc says i should be off since it's been almost 4 years. He is sending me for a shot of lidocaine hopefully this will end that pain he talked of fusing my subtalar but is also talking about amputation. Scary thought. Anyways, Currently i use a rocker bottom shoe. I live in the US and here they make them out of your own shoe so it doesn't have to b a granny shoe. I had mine made out of an Nike Air Max n it doesn't look bad. Most people don't even notice it's altered. Im also in the world of getting a orthotic somewhat like an afo but only goes to my ankle. Also not noticeable since its mostly inside my shoe...

Hope everyone happy healing as i keep yelling myself its gonna get better and could be so much worse... (In the accident i was dead brought back by cpr and i broke my neck and can still stand up) and seriously if you get really down about your situation just wheel yourself thru a large hospital and think about the other injuries u see... It will make you feel better. For real...

October 13, 2014 - 1:56pm
EmpowHER Guest
Anonymous

Can anybody tell me about the shoes they wore afterwards? If I'm going into granny boots I need to get my head around it first! By the way, getting a wheel chair was a great move, I now have so much more independence.

October 9, 2014 - 2:16am
EmpowHER Guest
Anonymous

21 years ago at the age of 28 my ankle was crushed in a car accident. When rebuilding it didn't work (arthritis set in quickly) my doctor suggested an ankle fusion to alleviate the pain. I mentally wasn't there yet because I knew a fused ankle would cost me all the sports I still played at the time. It took me a month to process that I wouldn't be able to do those sports anyway with my non-fused damaged ankle. The day after I made the decision to get my ankle used, I found out I was pregnant. That delayed my surgery over a year - I was on crutches for 2 1/2 years from the onset of the original accident, to my subsequent rebuilt, through pregnancy and finally my fused ankel surgery.

After my surgey my life was pretty good pain-wise. I couldn't run, wear heels, jump or play sports but I didn't have the 12 on a scale of 1-10 pain. About7 years ago the pain in my ankle started to come back again. Over the next 5-6 years I suffered with chronic pain but didn't think there was anything that could be done because afterall my ankle was "fused". Another surgeon across the country was willing to put in a new-to-the-market ankle replacement that he designed but needed to see my x-rays first. I went back to my surgeon to have x-rays taken to send to the other surgeon and my surgeon told me that he could "take away 80-90% of my pain" by fusing my subtalar joint. You should hae seen the surprise on my face that I had another joint in my ankle that went arthritic. I thought he fused my "ankle" - didn't know a thing about the subtalar - I was truly shocked.

Apparently after you get your ankle fused, the subtalar joint picks up the slack and usually goes arthritic in about 12-13 years after the ankle fusion. I was furious at my surgeon because he never told me back when my ankle was fused about the subtalar joint and he never told me that the subtalar joint will eventually go arthritic and need to be fused. I had my subtalar fused last July pf 2013. Surgery went great. My time in a cast went great. The sad part is my first physical therapist didn't do anything for me. On a scale of 1-10 my pain was a 12 as my achilles was like concrete. She told me not to work through the pain, which I later found out was the worst thing I could have done.

At week 13 after my surgery my surgeon told me I would walk into his office without crutches. Well, at week 13 I walked into his office with both crutches and in a lot of pain. He didn't know what to do with me. He only suggested arch supports and a "roll shoe". I got the arch supports immediately and I highly recommend that anyone with a fused subtalar joint does the same. I refused to get a role shoe. Other than that, I felt I was on my own. Week 13 was mid-late October. I was completely depressed for the next 7-8 weeks because I had no one to turn to and no one that could help me.

Then in early December at the end of my son's footbal banquet, one of my son's coaches approached me and asked me why I was still on crutches and what was going on. I told him my depressing story of how I had no one to turn to. He asked me a few questions about my surgery and the pain I was feeling and told me that he knew he could help me and to see him the next week. His day job is a phyiscal therapist.

I saw him the following Tuesday and he performed the Graston technique on me. Google it but basically he used hard metal tools and severely, and I mean severely, scraped every part of my lower leg, foot an ankle from below the knee down. Being on the receiving end of Graston is off the charts painful! Duing the procedure all I kept thinking was "this has got to be illegal" because of how much it hurt. He performed Graston on me for 30 minutes. When he was done he said very casually, like he knew it would be no problem, "walk on it". Now, keep in mind I walked in with a pain of 12 and on two crutches. When he was done I walked across the room and it was the best my ankle felt since BEFORE my original car accident!!!! I cried happy tears all the way home because I never thought I would experience no pain like that again. He basically saved my life as I was in a very deep dark place. That intial pain free moment lasted about a day but that's why you need to do subsequent sessions to really break up the scar tissue.

The concept behind Graston is to bring blood flow, which promotes healing, to all the scar tissue in my ankle and surrounging areas. The scraping breaks up the scar tissue and brings blood to the area. fyi...I also had a ton of scar tissue half way up my leg because the bottom 6 inches of my outside non-weight bearing leg bone shattered so I don't have the bottom 6 inches of that one and a hell of a lot of scar tissue there as well. Most Graston treatments are 6-8 sessions. After the first 3 or so sessions, you will bruise heavily (which is a good sign because it means that blood is in the area and helping with healing) but then your body adjusts and gets used to it. I did about 10 weekly session every 1-2 weeks. The best my ankle feels ever is when I hop off the table after a session. I now do Graston every 3-4 weeks.

I got a little planters fasciitis during this time but that is common after having the tight achilles issues. Graston is also good for planters fasciitis and has really really helpled me with that issue as well.

I can now walk normal and with very little pain. If I walk really long distances my ankle and foot area get achy and sore. Considering what i have been through, this is nothing. Every now and then I have some nerve pain in the top of my foot if I over do it. Every now and then my arch feels tight (Graston helps that too). Sometimes I get weird, uncomfortable pain on the outside my foot but it's managable. I am in a much happier place now that my pain is minimal.
My surgeon did tell me that the front of my foot will now pick up the slack for both of my joints being fused. He didn't say it but I know it to be true - eventually arthritis will settle in to the joints in the front of my foot. I'm not sure what will happen then. If I get those joints fused my foot will basically be a club with no movenment in the front at all - I'm assuming I would end up walking like I had a peg leg. I'm going to 49 on Friday and I can only pray that the front of my foot doesn't go arthritic for another 50 years - I doubt it but one can pray on it! :) I hope my story helps someone.

October 7, 2014 - 7:41pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thanks for sharing. Interesting long term insight in this post. Between this post and some others I'm picking up these main points:
> Immediate recovery is 4-6 months long, and ultimately 12-18 months. (Depending upon type of fusion)
> Set backs can happen and are different for all.
> Wheelchairs/scooters are required.
> Counselling is often required for long term pain management and depression.
> Nerve pain can be caused by screws entering through the nerve. This can be long term and varied. It can include pins & needles and numbness. (Not to be underestimated).
> Arthritic pain continues throughout patient's life and other joints and requires modified recreation and continued treatment (also not be underestimated).
> It's a very hard road, but many patients have long periods post surgery when they have less pain and can be more active.
Did I get it all?

October 8, 2014 - 9:13am
EmpowHER Guest
Anonymous

I had my left ankle fused when I was 15, and 21 years later my ankle is still attached and Im walking just fine :)

Arthritis can get the better of you during cold nights, but remember not to push yourself too hard. The pins and needles feeling will come and go, it's just blood circulation rerouting :)

Be patient and I'm sure you're recovery will be just fine.

Best of luck.

October 6, 2014 - 4:24am
EmpowHER Guest
Anonymous

I am 3 weeks post op sub talar fusion with bone graft from my shin. I had a cast with back slab for 2 weeks & now have a moon boot, non weight baring for 6 weeks at least. I so hate the crutches & plan to hire a wheel chair tomorrow. I fear my backside will be the size & shape of the sofa soon! I have had little pain & no complications so far. Sadly I can't use a knee scooter because the bone graft was taken from just below my knee & the wound hasn't yet healed. Fingers crossed for a good outcome & good luck to anybody about to go ahead with this procedure.

October 5, 2014 - 7:35am
EmpowHER Guest
Anonymous

Hello, it's very interesting to read stories of people who have had ankle fusion surgeries and about what they have experienced. I'm 23 and had been suffering from post-traumatic osteoarthritis in my right ankle due to an injury sustained when i was 13. I have since had 5 operations on my ankle, the fusion being my 5th. In around a week and half i will be having my cast removed and will be put in and air cast boot. Obviously this is dependant upon how well the joint is healing. I am however starting to feel really apprehensive about what the limitations will be when i come away from the crutches and out of the cast. Im wondering what shoes i can wear, how far i will be able to walk and what exercise is best. Has anyone got any further experiences they can share. The worry is definitely setting in.

September 16, 2014 - 5:44am
EmpowHER Guest
Anonymous

Thanks everyone for your advice and stories! I'm 19 years old and just had subtalar fusion surgery performed 8 days ago. Unfortunately this was my only option. I've been having serious pain, which I know is normal, but I keep getting nervous that it isn't healing correctly. My doctor told me the first two weeks is the most critical point of healing, and I go in for x-rays in 6 days to find out if it is healing correctly. Wish me luck! And it's nice to know I'm not the only person my age with degenerative arthritis and going through this operation! Gives me hope.

September 3, 2014 - 9:38pm
EmpowHER Guest
Anonymous

Hi, just wanted to share my experience

When I was 16 I was diagnosed with tarsal coalition, which was causing subtalar joint arthritis and I was scheduled for surgery, however for various reasons I cancelled my appointment and now 11 years later after years of pain after prolonged periods of standing or exercise I decided to go for the surgery. However now the option of excision wasn't available and I had to go for subtalar fusion.

01.07.14 I went in for the surgery in London and discharged the next day, I was put in a backslab plaster cast and the surgeon used one screw and artificial bone chips. The screw is just placed above my heel bone, countersunk in the bone and a 2" incision on the outer side of my right foot.
Day 1-9 I was in a backslab plaster cast, and mostly laid down on a sofa with high elevation. Foot Above the nose.
I pushed my luck and hopped around a lot and I could feel wetness in my cast, I got worried and booked an emergency appt, they opened the cast up and it was just sweat, very neat incision.
At this point my toes kept going deep purple, blue even if my foot was down for 1 minute. Really made me panic but my dr mate and hospital confirmed this is normal and as long as the cast isn't too tight then it will resolve by itself in few months. Exactly months.
The lady decided to pull the stitches and put me in a fixed fiberglass cast. For further 4 weeks. By the way if your foot gets hot in the cast wrap cling film around the cast make a cut and stick your Hoover in it, it will suck air through the cast and cool your foot helps an itchy foot.

Life on crutches is very difficult, so I bought a iwalk 2.0 knee crutch, ( that's a whole review by itself) for indoor use, went to british Red Cross and hired a wheelchair with leg elevator. So at least I wasn't house bound any longer.

The next 4 weeks was so longggggggg, time seems to be frozen. At 6 weeks I had my review appt and xray, the xray to me looked like it hadn't fused at all. I could see a gap , but the consultant said everything was fine but I must stay non weight bearing for further 6 weeks, I was totally shocked because all their leaflets say you can become partial weight bearing at 6 weeks.
But at least I m in a removable cast, at first very strange to have it on but then when you wash your feet it feels amazing . Plus I can massage my foot. My muscles have completely atrophied.

At this point I went on holiday and I discovered I could swim in Aircast boot if I take the foam out. Although walking on the beach non weight bearing with crutches isn't for the faint hearted. Vacoped cast is also similar but u can swim with the whole thing on. I v bought one but it's not really as comfortable as my aircast. It's mostly designed for a chillies tendon ruptures.
Before you fly go in and get the cast split in half to allow for increased swelling.
So the next 2 weeks went pretty quick .
Now 9 weeks in, I m still non weight bearing but I m going back to work , seated, to make the next 4 weeks go a bit quicker. I v read so many horror stories about non fusion and second ops, but I m trying to stay positive. These forums are really useful.

If you are planning to have this surgery make sure u plan to take at least around 4 months off, buy a waterproof cast cover, a knee walker or roller, hire a wheelchair, first few weeks have a carer. 12 weeks non wight bearing is so much harder than I expected hence I have time to write this long post :)

I hope this post helps you and good luck with your recovery

August 29, 2014 - 5:33am
EmpowHER Guest
Anonymous

Hi not here to scare you but I had a subtalar fusion in july 2013 all seemed to be fine until I got cast off at 9 week into a moonboot started physo and then the pain came and was so bad every time moved the pain was a 10. went to pain doc as my surgeon told me his work was good so went and he sent me for ultra sound and found something wrong with nerve so back to surgery got screws out and cut some of the nerve out then put the nerve into a vein why I don't no now I have one side of my foot numb. I went to another doctor had a CT and was told I had a non union great back to surgery this time I had a bone graft from hip I had 3 months in a cast and am now 4 month post surgery no pain while in cast but now im in pain 24/7 my surgeon has just told me he is happy with what he has done so go to a pain spec great here I go again 14 months still cant walk properly and have more pain than before my first opp.

August 26, 2014 - 3:51am
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