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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

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

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

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
EmpowHER Guest

Just so you know its not all roses, I had the Subtalar Fusion in 2012 and then had to go back in for the bone graft ( not cool) he should have done it the first time around. but for what ever reason he didnt. I have had 24 months of pain unable to walk unable to work or drive a car, I have been back to the surgeon and in contact on a monthly bases and hs advise is I have to give it time to heal............. so I did I have given it 2 years of my life and I finally had enough to go and get a second opinion from another high ranking surgeon who has told me that my foot has been misaligned and I really need to start the whole process again.......... NOTCOOL .

I wish you all the best with the operation, good luck hopefully I was one of the 2%.

August 15, 2014 - 3:34am
EmpowHER Guest
Anonymous (reply to Anonymous)

So sorry to hear that things didn't go well for you.... It sounds like you may have a negligence claim?

August 16, 2014 - 12:42pm
EmpowHER Guest

I had partial ankle fusions when I was a teenager. I'm almost 50 yrs now and I've had to slow down my physical activity. (I used to run but it was beginning to tear up my knees.) I use NSAIDs to help keep swelling and stiffness down on very active days. Need to be careful with those as they can be hard on your stomach. I prefer to wear boots with a modest heal. The boot is warm and supports my feet and the slight heal take some of the pressure off of the metatarsals. When I was running I used a carbon fiber brace used for toe-drop. This helped reinforce the metatarsals which I fractured a few times until I used the brace. I would suggest avoiding high impact exercise as it will take its toll on your ankle, knees and hips over time.

July 30, 2014 - 2:10pm
EmpowHER Guest

A few words of encouragement.....I had a subtalar fusion and peroneal tendon release in January 2014 and I don't look back: as difficult a decision as it was at the time, it has been life changing.

Before the fusion surgery I had chronic life-limiting pain due to post-traumatic osteoarthritis (I had fractured my calcaneus in September 2011 in a mountain biking accident). I was 36 at the time of the injury, was sporty and my husband, myself and our two children (both boys) were always active and on the go. I found it immensely difficult after the initial injury (I became depressed and was started on antidepressants) and never got back to normal, the joint being very stiff, painful and chronically swollen - I had several other smaller ops (metal removal, hydrodilatations, MUAs etc) in the hope that these would help, but ultimately I was referred to one of the best foot & ankle Surgeons in England, who diagnosed that I had peroneal tendon impingement and severe post-traumatic oseoarthritis - he advised that I had the fusion surgery and a peroneal tendon release.

It was a difficult decision to make at the time. After talking it though with my family and Psychatrist, I decided to go ahead but scheduled the surgery a few months later so that I could prepare properly - I changed our car to an automatic car so that I could drive, I ensured that I had a wheelchair available, I bought a tri-walker and a crutch pod, I stocked the freezer full of ready prepared meals, I arranged for a cleaner to come in for a few hours a week, I got fitter and lost 15kg, I worked like a dog at work to ensure that I could spend sufficient time re-cuperating at home afterwards.

I was very worried about pain control as I had suffered terribly at the time of the original ORIF calcaleus. In fact, the surgery went well, the pain was controlled with minimal pain relief and I was discharged the next day.

I had minimal pain (no need for painkillers) thereafter. Yes, it was frustrating being effectively on bed rest for 2 weeks (in a backslab) but I had worked so hard before I was kinda ready for it.

After two weeks, the stitches came out and I went into an Aircast Boot NWB.

Six weeks post surgery I was allowed to start to PWB in the Aircast Boot.

A few weeks later I ditched the crutches (walking in the boot).

Twelve weeks post surgery, I came out of the boot and the physio began and I returned to work.

I am now just under 6 months post surgery. I have NO PAIN. My normal activities of daily living are no longer affected. I can go out with my children, walk the dog without pain. I have been cycling (last ride was 80km). Yesterday I started a 0-5km running programme and I actually ran for 6 minutes!

The surgery has been life-changing. Yes, there is still a lot of work to do, but it feels like I have got my life back. I am no longer depressed, grumpy and tired the whole time.

So my advice :

If you are going to have the surgery, prepared well to minimise any disruption. Try to ensure that you have psychological support throughout (for me, this was a Psychiatrist).

If you have had the surgery and are post-op, stick in there. It may be frustrating now, but in the medium-longer term, you will realise it was well worth the investment!

June 4, 2014 - 1:31pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you so much for sharing! I had both talonavicular and subtalar join fusions. I just hit week 6 and am beginning the PWB without the boot (per doctor's orders). While my talonavicular has no pain, the subtalar screw placement is making it feel like I'm walking on marbles - totally uncomfortable. Does this eventually go away or do you just get used to it? Also, my ankle (not my foot) is swollen and I'm not sure if that's normal?

August 6, 2014 - 3:54pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you so much for sharing your journey!!! I'm 32 with two kids under the age of 4 and I'm going to schedule my subtalar fusion next month. I fell down while I was pregnant with my youngest and I finally reached a point (2 year later) where I can no longer stand the pain of walking. I was really scared at first when I was told I had to have the surgery and it's taken me awhile to come around to being okay with the idea. It was really encouraging to read how much your every day life has improved and I look forward to the same opportunity. :)

July 27, 2014 - 9:48pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I hope it all goes well for you.

By way of further encouragement, a few weeks ago (so 6 months post-surgery), we went on a family holiday to Wales and I was able to Climb Snowdon, Go Underground (into a Mine), went Climbing, Bouldering and Abseilling and Gorge Scrambling. I have been Orienteering with the children, I have started to play Squash and Tennis again. Not only am I alive, but I am living. It is an amazing feeling :-)

So, if/when you are feeling a bit down post-op, just hold onto why you are doing it - to improve your quality of life and be able to enjoy life, rather than to exist......

July 29, 2014 - 2:10am
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