Hi everyone

I apologise for this ridiculously long post. I'm wondering if anyone can relate to any of this? Or has had a similar experience?

If so, what advice did you get? Did physio or surgery work for you? Do you know what caused your OCD?

Thanks so much in advance xxxx

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  • That's such a pain! I think saying you could run again may have been a bit premature...hard to say it's different for everyone and some people on this group have said they're able to run again but most can't, I know if I tried to run, after a few steps it'd give way...plus my surgeon said from the start to me, whether or not you are capable of running you probably shouldn't ever run again because the excess force and it'll keep making the OCD worse and causing damage.

    I think physio and orthotics are probably a good conservative approach to take before you decide to undergo surgery again and it might help a bit or a lot but probably couldn't hurt anyway! Physio didn't help me at all but my surgeon said my legion is way too bad for conservative approaches to work. Everyone on here is different though, results vary a lot!

    I totally feel your pain(literally) I used to be so sporty and now I feel so crippled, I spend half my work day limping on one foot, which then starts to hurt so they both hurt! This disease really sucks!

  • Thank you so much for the reply. Whats the story with your OCD? How long have you had it? Is it in the ankle? x

  • Lilian Bankiyan-Monfard yep mine is my right ankle(and I suspect it's also developing in my other ankle and my knee), it started when I was 16 and now I'm 21 and because the Irish health system is a joke, I've been waiting for surgery for two years...when I last saw my surgeon oct '14 I wasn't in too much pain, I could walk around for a couple of hours before it got bad, but he said it was a miracle that I was walking without crutches! But now it's so so much worse, it takes hours for the swelling to go down after an 8/9 hour shift in the kitchen

  • I couldn't handle the pain. I did the drilling and like you it didn't work. Every step I took killed. I developed other issues because of me compensating to avoid the pain. I had cadaver cartilage replacement. Went on a donor list and waited had it within a few months. My donor was a teenage boy they wanted adolescent tissue. I had the surgery 2.5 years ago and got my life back!!! Don't take the tissue from your other body parts you will them compromise that area. I highly suggest cadaver cartilage. I developed it over repeated rolling of my ankles and bad sprains. I was always active and I'm hyper mobile which didn't help. I have great flexibility in my joints. Good Luck! Went to numerous doctors and got many 2nd 3rd and 4th opinions. I'm glad I chose this option.

  • wow thank you so much for this. I'm going to look into it. Does your lesion have to be a particular size before this treatment becomes an option? And are you based in the UK? If so, was it an NHS or a private operation? Thanks!

  • Sorry to hear what you're going through. I'm actually in a similar situation as you. Failed a microfracture and had surgery again (DeNovo carriage implantation). The ankle feels much better but still some residual pain/stiffness two years later that my doctors think is tendinitis/synovitis. They also told me PT would make it go away but it seems to have flared it up a bit.

    What and where exactly is the pain you are experiencing? Where in your range of motion does it hurt? I'm wondering if we are experiencing the same thing.

  • Exact same story as mine

  • really??

  • Lilian Bankiyan-Monfard no US. NJ. My doctor is out of Freehold NJ.

  • My OCD is in my left knee. I was originally diagnosed with a minuscus fiscus at the age of 5. They operated at the age of 6 to repair it where I was left with the OCD. Flash forward I'm now 37 still suffering had multiple surgeries but the pain is still there. I too am in the U.K. And I go to the rjah orthopaedic hospital in Gobowen Shropshire

  • Very similar to my story (mine is my knee though) I was made to feel like I was making the knee pain up and when he did the arthroscopy he found an 18mm defect in the cartilage so did microfracture, it seems the microfracture caused the OCD in my case ☹️️ I'm over a year since they discovered the OCD and they've still not done anything so have gone for a second opinion, nhs can be a real battle sometimes

  • We have both seen Mr Goldberg! Speak to you at a more sociable hour. Just woke up and read your message. Now making the most of the extra hour...

  • My surgeon first injected something into/near the lesion to confirm that's where my pain was coming from.

  • Hi Lilian, i can relate to your situation. I to was very active skiing, netball, and walking miles with my dog. Not 100% sure on how it happened but i think it was netball. It took 5 months to diagnose because I had PT on it first to see if it was muscular. A 7mm lesion at 40yr old i was told the odds on it healing conservatively were very small, but that was tried for 6 weeks, orthotics. I wasnt prepared for how my body would react to the change in walking position, i found it crippling, my whole body hurt. Well it didnt work so had a microfracture proceedure and was told the cartlidge was shredded so it was removed. The sugeon gave me a 60/40 on the odds that it would improve, but my age was against me. It made matters worse. 4 years later and alot of research nothing I have seen on offer after having a second opinion with the nhs is making me want to opt for more surgery. Living alone and having a mortgage to pay also stops me from going the surgery route. I only cycle now as i hate swimming. The more i do the more it hurts the more it swells is rule of thumb for me. I am looking after it and muddling through, pain killers and elevation. Shoes and boots are a big problem i tend to stick with fitflops with wobble board for anti shock, sketchers and earth spirit depending on the style. The pain at times stops you in your tracks, but there are loads of people in worse situations than me. X

  • I can definitely relate to this...was originally diagnosed in 2011. I have now had 5 surgeries (at one point i had a 15 mm lesion!), and would you guess, still not better! The pain brings me to tears sometimes. I recently got a second (more like 5th, I guess) opinion from a surgeon at the Mayo Clinic. Not much luck...he is hesitant to go in for another surgery, but doesn't know what else to do. Said PT wouldn't really make a difference, but anything is worth trying (pain management doctors, etc...even acupuncture) - even if it is just a placebo effect. Wants me to wear a brace and take it easy. Didn't really have any answers for me. But another surgeon suggested I get an "Arizona brace"..maybe talk to your surgeon about that. I can tell you right now, they are not attractive, but if it helps it's worth it. You would need your doctor to give you a prescription for one, you would go somewhere that can mold your ankle for one, and they send that to a surgeon in AZ who makes all of them. Sorry I don't have anything else for you... I definitely know how frustrating it is to not get any answers. Best of luck to you!