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Freiberg's Disease

Posted , 9 users are following.

babycera
babycera

I was diagnosed with freibergs September 2009 after suffering pain since i was 16 am now 38!! My doctor had misdiagnosed me all them years ago saying there was nothing wrong and yet 2 years later diagnosed 'Rheumatoid Arthritis'?? how she came to that conclusion is beyond me as she never sent me for a single x-ray. Anyway moved out of area last year so changed my G.P and she referred me to a specialist straight away who diagnosed Freibergs and said because it had been untreated and neglected for 22 years my foot was shot to pieces but that he would try his very best. i had surgery march 2010 2 procedures (debridement & stainsby procedure) basically my second metatarsal had fused to my 1st and collapsed so he had to split the bone in half and reposition my tendon between the bones and basically tie it up inside with wire then he inserted a metatarsal bar through the top of my 2nd toe right through my foot to hold my foot together, bar was taken out 4 weeks later, it's been 6 months since my op am due to see my surgeon beginning november but i know the outcome already, more surgery! ;-( i am in so much pain with my foot it is actually worse than before but he has said that i may face many many surgical procedures and that he will try his best for me but that if any op is successful i can only hope to stay the same it wil never be any better it is such a shock to know that am gonna be in this much pain indeffinately ;-( it is disabling i can no longer drive, can't walk far anymore, it has caused me problems to my spine now. there is not enough information out there for sufferers i wish there was somewhere i could get help and information.

2 likes, 8 replies

8 Replies

  • Kyky0621
    Kyky0621 babycera

    Posted

    Unfortunately there isn't much information out there in freiburgs. Actually, after my first doctor diagnosed me with it at age 12 (18years ago), other doctors I've been to have had to research it when I told them what I had. I was supposed to have surgery at 23, but had to cancel due to starting a new job. I finally had surgery in 2013 and am still in aa lot of pain. Hope your doc figured your procedures out and you're feeling better now!
  • Rachel1111
    Rachel1111 babycera

    Posted

    Iv had this since I was about 9 years old. After 5 referals to the hospital at 16 the doctor told me the toe had been pushed back into my foot and offered to cut the nuckle out! I obviously refused. After 7 years of agony with every step I had got used to it. It had been missed on every X-ray until my toe was half an inch shorter than before. Not only that but the doctors never told me what it was! It wasn't until I got my medical records that I saw the diagnosis of freiburgs. Before that I had no idea why I had been in pain. Basically I got so tired of being turned away with "we don't know what it is" and being fobbed off with painkillers that did nothing, that I gave up and didn't visit a doctor for 10 years. 

    Now I'm not sure if it's connected but I'm guessing it is. I have a tibial torsion that I am about to have surgery on because the same leg is twisted out to a 32 degree angle and this has caused pain in my knee since primary school. Another thing that prompted several hospital referals with no diagnosis till last year. Growing pains I was told for 10 years! Also the discs in my lower spine have so many rips and tears they stopped counting and I have resulting arthritis is in my spine. My spine is also curved in several directions it shouldn't be. My hips and knees, especially the twisted one, are constantly painful and the whole lot put together means I'm virtually unable to walk. I'm 35 years old and I'm only just receiving treatment in 4 weeks to straighten my leg. This means breaking the bones to set it straight and a possible second op to reposition the tendon from my kneecap. I am now worried that my foot being in a different position could set off the freiburgs again. I thought it was something that only happened when you were growing but it looks like it can happen any time. 

    One thing is, it's nice to know I'm not alone in this. Answers are always some relief and I totally understand the turmoil of not getting any answers or explanation. Especially when lack of correct diagnosis has caused untold further damage that was totally preventable. 

    • Rachel1111
      Rachel1111

      Posted

      Correction, my leg was twisted out at a 76 degree angle. The surgery went well and Im currently recovering. Its going to be a long process and I am currently 7 weeks post-op and staring to put some weight on the leg. Having quite a bit of foot pain but Im not sure how much of that will settle down. Im just extremely happy to have a straight leg and im hopefull it will improve my knee, hip and foot pain. Another thing to note is something in the middle of my foot also dislocates when I walk. This is very painful. I am also hoping this improves. I will try to provide an update when I can stand on my leg again and walk unaided, though this could be some months yet. 
  • SarahOlivia
    SarahOlivia babycera

    Posted

    Hi! I'm not 100% sure if you all still follow this discussion but thought i would give it a shot anyway. I've recently been diagnosed with freibergs disease (was given the news after complaining to the doctor several times, she then sent me for xray) Unfortunately I'm in the late stages of it, and awaiting to have surgery. The reason I'm writing is, i would like to know all of your outcomes? Are yous all better? or can this be a reoccurring thing? I haven't been told much, and like you have  all stated, there isnt much information around.Any help/information would be great!

    Hope for a reply! Thanks x

    • laura06269
      laura06269 SarahOlivia

      Posted

      Hi hoping you are still around to answer this .... what operation did you have as I have had 3 operations and none have helped now I have constant pain and pressure in my toes and the bottom and top of my foot I am desperate for something to relieve it but as said above not many doctors know about this disease so I feel like I am fighting a loosing battle 
  • ka1987
    ka1987 babycera

    Posted

    Hi all! Here with freiberg's since 2003 and feeling so alone giving that the disease is extremely rare. Never discussed this anywhere online and would be extremely happy (is that the right word?) if more people share their stories!

    Living in constant mild pain and absolutely not able to try on high heels (no walks, of course!), no long distance walks even in trainers, no bare foot etc. Kind of got used to it but still in wonders whether i need an op or not.

    Please share your experiences and how you deal with that unusual thing?

    Please let us know was your op worth it?

    My huge support to all of you and wishing a very speedy recovery!

    K

    • vicki75839
      vicki75839 ka1987

      Posted

      Hi

      Ive had freibergs disease for 29 years and as others have said the feet, knees, spine and hips all have secondary issues due to the Freibergs. Ive found the facebook group on freibergs helpful to know you arent alone.

      Hope you start to feel better very soon.

  • dawn40134
    dawn40134 babycera

    Posted

    Hi! I'm late to the party, but like you I've just had surgery for friebergs albeit it's not been as traumatic as the cases above....but I cant find anything about recovery apart from medical websites and the odd blog from people that live with the disease. Mine was diagnosed last year, part of the bone had broken off and was sitting in my toe joint, i was a keen runner who had not been able to run for a year as it caused me pain to run and if i ignored it my foot would swell up. At 38 years old, the surgeon I was referred to said it would have to be operated on or would become arthritic. All went well, I am 4 weeks post surgery and now I am suffering hip and leg pain, I guess it's from walking trying to avoid putting weight on the joint...while i am sitting down the majority of the day,I have two kids under 10 so complete bed rest has been impossible! 😃 I need to get fitted for new trainers to walk in and apart from a wide toe box and a rocker sole, I'm at a loss at what to look at. (We're just coming out of lockdown so shopping has just been on line, plus being unable to walk far etc)

    Would be interested to know how people have coped through recovering and if they've managed to return to any normality, all the scientific reports around the procedures I've read talk about the success rates, so I'm hoping there's more stories! Thanks!

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