Freiberg's Disease

Posted , 5 users are following.

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, 5 replies

Report / Delete

5 Replies

  • 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!
    Report / Delete Reply
  • 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. 

    Report / Delete Reply
    • 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. 
      Report / Delete Reply
  • 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

    Report / Delete Reply
    • 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 
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up