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Mid foot fusion and mueller Weiss syndrome

Posted , 6 users are following.

lorna87380
lorna87380

I am after some advice or feedback from others that have had mid foot fusion. I've been diagnosed with mueller Weiss syndrome resulting in a deformed navicular bone and bone on bone arthritis in my talonavicular joint in both feet. I'm forty, reasonably fit and healthy with young children. I'm still getting through my day to day life reasonably easily, but it is slowly getting worse with me being more reluctant to go on long walks as it's results in painful feet afterwards and a bit of hobbling for a few days. I'm restricted on what I used to do just a few years ago (regular runner, some sprint triathlons etc) and just slowly able to do less and less.

My question is should I carry on until I'm in a place where it becomes unbearable day to day or is there a case for getting it done sooner rather than later so I can do more with less pain enabling me to be more active with the kids as they grow up? 

Is there anyone else out there who has mueller Weiss? Or even just a similar problem that has led to mid foot fusion?

Thanks for reading and any thoughts suggestions would be greatly welcome. 

1 like, 10 replies

10 Replies

  • Massage
    Massage lorna87380

    Posted

    Dear Lorna,

    you have said you have been a persistent runner - even triathlons over a long period of time.  And have suffered from intermittent pain and stiffness.  And now certain bones in the feet are suffering from necrosis - and lack of blood supply.  Could you tell me how much rehabilitation, massage, and stretching you have been doing to get your feet into a healthy place.    Please let me know - and if any of your health advisors have recommended it being worthwhile.

    • lorna87380
      lorna87380 Massage

      Posted

      Hi, I have had no advice on any of this. I was only diagnosed 2years ago and thought my foot pain was something to do with after having my second child who is now 4. I had no indication before this that I had a problem. Before children I did a lot of running and since children less so, but still regular. I always stretched before and after, but nothing particularly foot orientated. I've spoken to several people since being diagnosed, a few orthopaedic consultants and some physiotherapists, but all have said there is nothing I can do now except fusion, yet most are saying probably not yet as I'm still managing my day to day life (I did try steroid injections, but they didn't work).

      it is very painful to touch firmly around the front and inside of my foot, but I do try and massage and move as much as is bearable from time to time, this sometimes makes it feel worse afterwards though.

    • Massage
      Massage lorna87380

      Posted

      How much flexibility do you have in the toes, the ankle, the lower leg / knee ? Can you feel a difference in stiffness between the two feet?
    • lorna87380
      lorna87380 Massage

      Posted

      No problem with knee, lower leg, ankle. Toes generally ok, but sometimes pain/stiffness if pull up in big toe. Left foot is worse than right. Most pain/stiffness with rotation of the foot or if knocked laterally. There's a noticeable lump on the top of my foot from excess bone growth, more so on left than right.

  • janice43028
    janice43028 lorna87380

    Posted

    Hello Lorna.  Your feet problems sound very similar to mine.  I have suffered with my feet problems for over twenty years, with the insteps eventually collapsing, touching  the ground, and large bone growths formed on the top of the foot over the instep. My toes  claw the ground as I walk.   I have been wearing orthotic shoes for more than twenty years. My feet also splay outwards from the ankle.  Over the years, I have endured several episodes of steroid injections under scan, though I can’t say that they helped substantially, but I was so desperate that I would try anything. I also am on strong pain relief. I have several areas of osteoarthritis. I have had bilateral knee replacements, which are giving me trouble again; I feel from my gait. I had midfoot fusion done on one foot just over a year ago, which corrected the outward splay.  I now have a plate and screws in the operated foot.  I do still have discomfort in the foot. I have found this forum substantially more informative than my surgeon.  I now understand that recovery from midfoot repair is a very slow, arduous journey.  I have come to the conclusion that it would be better to have the fusion done while you are younger, (I am a grandmother and was very active) before it gets to the point where I am now.   I was very reluctant to have the surgery and sought a number of opinions.  I will go ahead and have my other foot done, but just not yet.  I see on this forum that people say recovery is 1 to 2 years; unfortunately, I think they may be correct.  So, the outward splay has been corrected, the lump corrected, the pain is less, and I obtained a plate and screws to support the midfoot (some people say their plate and screws have been removed, but that was never mentioned by my doctor).  So, I wish all of us a beneficial recovery.
    • lorna87380
      lorna87380 janice43028

      Posted

      Hi Janice, thank you for your reply. It sounds like the fusion has made a huge difference, so good luck with the other foot, I hope it is as successful. If you could turn back time at what point would you have had a fusion? I think it is still a little early for me, but ive been told it's inevitable that I will have to have it at some point. I have also read about the long recovery and the idea of fusion just sounds so dramatic. Having never had a major operation and not being crippled by it yet (just bit down and grumpy at not being able to do what I feel I should) my initial instinct is it feels wrong and to leave as long as possible! My consultant at this stage is dissuading me, I feel mostly as he is unsure of the outcome and if I can limp on I should. 

    • Guest
      Guest lorna87380

      Posted

      Hello Lorna. I too am waiting to get a mid foot fusion for TN arthritis.

      I'm holding off till I can get off steroids for something else. I have had painful feet for several years but the best thing I did was to get bespoke orthotics..NOT off the peg but from a really good specialist who is accomplished at interpreting a computer generated test which looks at your  foot Bio Mechanics. if you are in the Thames valley I will P mssg you my specialist. it has cost a bit but well worth it to keep you mobile as your children still young. Obviously you should be guided by your surgeon. be wary of people who say they do orthotics but arn't really specialised in that though, I'm afraid the NHS doesnt  cut the Orthotic mustard in my experience. Having proper orthotics has postponed my op by several years and protected my other foot too. Goodluck

  • Raz3
    Raz3 lorna87380

    Posted

    After the birth of my second child (2002) and lots and lots of visits to various doctors and physiotherapists I was finally diagnosed with MWS, only after the doc ordered an MRI.

    After consulting the top MWS specialist in the country, the only option he saw was fusing two bones together. He warned that I would never walk the same again. An avid tennis player, that thought terrified me, so I never had the operation.

    At that time, I went through six months of accupuncture which helped a lot.

    Last year when my mother noticed the swelling, I had another MRI done - the diagnosis did not change, nor did the severity of MWS change over 15 years, but arthritis has set in. I've also got a some protrusion on the top of my right foot, and some splaying.

    Desperate to relieve the swelling and pain without ruining my liver with Acetaminophen and Ibuprophen, I fell on Turmeric that gave me relief. Now I'm taking Turmeric supplements (CuraPro) and they help lots of other things too. FWIW

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