My OCD Chronicles

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PRE-DIAGNOSIS

When I was 15, so in 2004 I twisted my right ankle playing Football/Soccer. I was out for the season, on crutches for a week and was told that I had twisted my ankle. I did strengthening physiotherapy for a couple of weeks. Ever since then, my right ankle was always the "weaker one". I continued playing sports, my ankle didn't bother me. Only sometimes, if I ran for a long time, it would feel a little sore.

From ages 15-25 I continued being very active, and developed a love for running, never more than 10km though. Occasionally my ankle would be sore after long runs, but very rarely and nothing a little bit of ice couldn't fix.

2014

On May 31st, 2014 I went on a 10km run around the city with a pair of new trainers. During my run, I felt like my shoes were not that comforable. The nexy day I woke up and my ankle wasn't just sore, but it really hurt to step. It felt strange that I was in acute pain, without an acute "injury". I did not twist, step badly or run into a ditch. The nexy day I go to the ER, they only do x-rays. Nothing is wrong with my bones, but it hurts to walk. They recommend I go to a specialist. He recommends an MRI. I do an MRI, he immediately says I have OCD, that it is likely I need surgery, but that I should get another opinion. That seemed quite extreme to me at the time. He puts me on crutches for 2 weeks. 

The 2nd doctor confirms I have OCD, he reommends the biocartilage macci surgery (need to double check actual name). However, surgery is a big step. I also don't like this doctor. I get off my crutches but my ankle is still painful. I can walk but it feels stiff, sore and it doesn't seem to be getting better.

Treatment approach 1: I do 1 month of physiotherapy (July 2014). I combine this with laser therapy, magno therapy and tecar. After 1 month of very minimal walking, I feel better. My ankle is stronger and I feel better. I feel relieved.

August 2014. As soon as I start living as before, and not going to a physiotherapist anymore, the pain comes back. I get a third opinion, he says that the bone under my cartilage is necrotic (dead) and this lesion could get worse. He recommends the mosaicplasty/autograft implact from knee, which is the most invasive surgery, but he tells me that because of the location of my lesion (posterior), the mallelous needs to be severed in order for the graft to be implanted. He tells me its a 6 week recovery, non-weight baring and that it is better to do this now rather than later as I am young, athletic and can bounce back quick. I agree and the surgery is booked for Sept 15th.

Sept 15. Autograft of posterial lesion (insert size). 1 week in hospital. A lot of pain, weeks 1-3 are very unpleasant. No weight baring, leg up at all times, compression stocking which is VERY tight which needs to be changed every 2 days over a fractured tibia. Lots of painkillers, no sleep, anti-thrombosis injections daily. 3-6 get's a little better in terms of pain. Boot comes off after 6 weeks.

Boot coming off does not mean the recovery is over. In fact, it is just beginning. During October, I do some soft physiotherapy. I learn how to walk again. November and December are fully dedicated to physiotherapy 3-4x a week. Things do not seem to be getting better. I can move and walk but progress seems to have stagnated. After 4 months, I quit my job and I go on vacation.

 

2015

Traveling is hard but I go anyway in January 2015 for 2 weeks. It is not a particularly adventurous vacation but I am being active. It's only been 4 months, I read on many blogs that it takes up to a year to fully recover and i'm not even half way, my doctor confirms this. This relieves me. My pain has changed from pre-surgery. My ankle feels arthritic and my pain runs all the way up my calf. It is no longer a location-specific point on the outside of my foot which feels inflammed but feels like the entire joint is weak, stiff, diconnected, sore.

February-April 2015 I take it easy. Progress still seems to be stagnant, however an MRI (insert date) shows that the graft has integrated. In May, I see a very renowned specialist in London. He asks me to get a CAT scan and an ultrasound to understand what could be the cause of pain. It looks like my graft is slightly prowed (there is a "step/impingement" in the articular surface. We also find that the screws put into my ankle to seal the osteotomy is very close to my posterior tibial tendon and probably affecting it negatively. He says that I should also wait until the 1 year mark to see how I am then and does recommend physiotherapy to strengthen the ankle.

July I begin physiotherapy again, to remove inflammation. The physio is also more progressed and active and to strenghten my ankle. I do this about 4x a week. I feel my ankle is better at times, and sometimes not at all. I find it hard to find a pattern for when it hurts and when it doesn't. Sometimes being active helps it (i.e. with biking) sometimes it makes it worse. During this time I bike for exercise but nothing else. Running is impossible, even for the bus. 

In July, 10 months after my operation, I see my surgeon again who prescibes me cortisone. I don't take it. Instead I take pain killers he prescribed. Ibuprofen. Not great for the stomach and what I've been taking already when I have pain. He tells me that he isn't sure why I still have pain, but that the screws being very close to my tibial tendon shouldn't really be the reason, he also ways to wait for the 1 year mark. End of July I move and start a new job. My focus is with my new job and I stop physiotherapy. 2 months go by, I do 3-4 sessions of physiotherapy and go to the gym (still just biking). I realise I am not getting better. I speak to a doctor who prescribes me TAUXIB. This gives me relief, I run out after 1 month. I realise the relief was from the medication, and only temporary. I finally hit the 1 year mark and go back to the renowned doctor who tells me that he recommends a second surgery, to remove the screws as well as do an "arthroscopy" with a camera to see what the current situation is. I seek 2 more opinions as I don't want to fall into a rabbit hole of surgeries. 1 of the doctors disagrees and recommends only to get the screws removed, as he wouldn't recommend an arthorsopy without doing an MRI WITHOUT screws as the images aren't clear enough. My surgeon as well as another confirm that they would also do the arthroscopy just to be able to judge what my joint looks like. For insurance reasons and location difficulties, I do the surgery with another doctor.

 

December 15th (1 year and 3 months after first operation) I do this procedure. Screws are removed. They also find that I have fibrosis, a lot of scar tissue which has developed in my joint as a result of the invasive surgery, due to trauma. They do a clean up of the scar tissue. They see the graft has integrated into what was the previous lesion. However, knee cartilage is now there, which is slightly more "dense" than ankle cartilage. However, looks good. Pain post-OP is minimal, nothing that's much worse than my day to day pain. I am in crutches for 1 week and partly use my crutches for another 3-4 days. Stiches are removed after 13 days.

I am currently 2 weeks post operation of this procedure and had my first physiotherapy session Dec 29th, 2015. My ankle doesn't feel much different right now, however the doc says that I still have wounds, that it is recent and that I need to remove the inflammation of my tensons. The pain isn't bad enough for me to continue taking painkillers (on my pain-o-meter) however, it is by no means good enough for me to wander or be active.

The doc says I should do about 10 days physiotherapy and see how I am. We could consider uric acid, PRP or cortisone injections. This was mentioned to me by previous doctors about 6 months post-op, but was never done. 

2016

End January - My ankle feels slightly less "tight". The pain continues. Mr. McKenna at the Sports Santry Clinic recommends I get a cortisone injection in my tibial tendon as it is likely to be inflamed.

February 19th - Last MRI scan made. First cortisone injection

Physiotherapy 1/week and light gym sessions. Flexibility very limited.

Coristone in the tibial tendon doesn't do anything for me. I get the MRI report back (done just 20mins before the tibial tendon injection) which says tibial tendon is fne (not infalmed. This is where I wonder why I ever got that injection, or why the MRI wasn't done before attempting this trial.

March - Send my scan to NYC (recommended doctor from woman who was operated by him), he says that my fracture didn't heal properly, my tendons are damanged and the defect needs to be redone. He would do OATS again. This seems extreme to me. I ask what the probabilty of getting good results with a second OATS is, I am told that there isn't enough research on that. As my pain seems to be colateral damage from my OATS, this doesn't seem to be a reasonable option for me.

April - Go to London to see the surgeon I feel most comfortable with (London). He looks at my last MRI and says he needs a CT arthorgram/CAT scan with contrast substance to look at my ankle better and to compare it to the CT scan from the year before.

May - Get scan. Says the following - https://lh3.googleusercontent.com/Tb8HLoWQ2h_GD0xQ_oFRFuBODyr4hZ3aQrt-fXlibtuVzQBUgQmL7woiAGOyJeg4dDIVDgCQvOxuOSFfJt5pAO6GI9JQNAPhtb3uLQGQmB-IulRqGmjUdCbymAuJ4SGMO0TdinUh87SxMPLj_MyKbDo7MhAbzcJJU_nWQbS1XxIdAKxb_c7Osh9evy0Mc_V8VlyckOH1lVLoIcjJ7N0XRRRYb1K5cQ8DhZKaCTSpYGFUAtxBKZ2iwwGq1szMSJTyO66t9R_Zm82tdnLhrM8k1jBSh3C-qzDEJXesFHrF74Puo31RfyjarnoVPgmS25OmtYg8PlznX0QdphQoYhvN07JNSuiMhcHJeaObPThf-w7AKFPRp5uHbGkgVmBJLvFkhtnHrOJUtrh16cYpYZlGsSSNeWZQqzR1e6No-yq9OgLjW-St7mAEhBde_PXKdeTbWVg2VFvz2Q99wrM38DqlmuEbByc_Qom7QgebazqJOfoT0_pypL0qJ7Nad7cKLRBQphBmDsAN0eMZu1pabgREqEchoEm1deUCA1K7jzl1V-FLp5YDBf4OLwVapbddi__vGAqFt0wdOjwRBDgRDaYYNtgkeuT6sLM=w704-h441-no

June - Go back to London doctor who says I should do a coristone injection into the joint to see whether it gives me relief and also as a diagnostic measure to assess whether the pain is actually coming fully from the joint. Suggests an orthotomy (open surgery, no bone cutting but debridgement and BMAC. 

He says that I have now developed arthiritis due to the OATS and that I now have a tibial lesion (which I didn't have before) as well as my original talus defect.

July - Doing research. I want to understand other injection options better as cortisone only seems to mask pain. Also want to understand more about stem cells, and conservative options I have.