I feel like it has been one calamity after another lately. It’s as I was getting over the knee replacement, I began to have problems with my left (non TKR) leg. An 18 month fight with the medical system and multiple bungles / incorrect diagnoses could now leave me with permanent damage and loss of function.
The whole melodrama started around 6 months after my knee replacement (March 2019). I noticed the bottom of my foot would go numb when I was out cycling. I disregarded this at first because if I stamped my foot when I stopped, it would be ok again.
This then escalated to more of my foot going numb. I had a vascular test at this stage and I was told everything was fine. But it wasn’t. The symptoms continued to escalate. By October 2019 I was having significant problems cycling and walking. The pain was now at a level that I needed medication to be able to continue to function. By Christmas 2019 I was no longer able to walk, cycling was becoming increasingly more impossible and the meds had been increased further.
I continued to hound medical staff about this but was send to various different departments – each of which said it was someone else’s problem. I noticed that the pain was significantly affected by the way I positioned my leg. This suggested to me that the issue might be vascular/ circulation based. Every medical person I spoke to told me I was talking nonsense and the symptoms I was describing were too unusual to be possible.
At this stage my GP had sent me to get a nerve conduction test (which measures nerve signals in the leg). This showed significant issues so I was sent to a neurologist. at this stage the diagnosis was peripheral neuropathy but no one could explain to me why this might have occurred. Meanwhile I was sent for blood tests. All clear.
The neurologist wasn’t sure it was his problem so I was sent for an MRI and then referred to an orthopaedic surgeon. Apparently the problem was now in my back.
Orthopaedic surgeon says no, the problem isn’t my back. My foot was now getting really cold and going bright red a lot. I showed this to the orthopaedic surgeon at my consultation. Now the diagnosis has changed to CRPS (chronic regional pain syndrome). Again, no one could explain to me why this might have happened. Yep, sent for more blood tests, still all clear. I researched CRPS and began to feel like this was a death sentence. I might have to face the fact I may never work again.
ED visit #1
The pain had escalated further and become completely unbearable. It was keeping me awake at night, rendering me almost incapable of continuing to work at full capacity and causing me significant stress – borderline chronic depression. Mark, my husband, took me to ED because I was in so much pain. ED said there was nothing wrong with me, and sent me away with (a useless) dose of yet another drug.
I went back to my GP for assistance. It seems my GP has left, I now have a new GP. This turns out to be a significant positive step, I find out later.
All exercise is now off the cards. I am struggling just to function day to day. Walking without crutches was now impossible. I actually bought myself some so I could still get around. I felt like no one was listening to me. So many different medical professionals had told me there was nothing wrong that I began to think they were all suggesting I was making this up. So I go back to my (new) GP for advice.
On this visit I was able to show the GP what was now happening with my left leg/ foot. This is the picture that got his attention. It turned out to be a significant turning point.
Remember, I had suggested a while back that the problem was circulation / vascular, I was told I was wrong. On this visit to my (new) GP, when my foot looked like this he was significantly alarmed enough to call another GP in to take a look. They agreed with me that it did look like it was vascular.
But, because we didn’t know precisely what was causing the problem (or where the problem was) he was stumped as to what to do (in the immediate instance) to help alleviate my ever increasing pain. So he took a punt and suggested we try BP meds, to see if they helped open the venous and arterial pathways and thus perhaps alleviate some of my foot pain.
As it turns out, this did help a smidgen so he quadrupled the dose and told me to monitor my BP to make sure it didn’t drop too low.
Loss of function in the foot
Next, I noticed that I could no longer feel most of my foot, the nerve pain continued to plague me and the newest symptom was that I could no longer move my toes.
I called my doctor (because now we were in lock down). He was very alarmed at this stage and sent me straight to ED saying that someone needed to do something, and fast. He also made a vascular surgeon referral too at this point.
ED visit #2
I was in ED 9 whole hours. The surgical registrar (a trainee doctor) tested my foot and said there was nothing wrong with it. I told him that was nonsense and demanded a second opinion. He then brought in his superior, who also tested my foot and told me the problem wasn’t vascular, it was orthopaedic, so sent me back there.
Although I did not agree with this at all, I went off to Orthopaedics and of course, was told it was not my back. well I already flipping knew that!
My GP was becoming increasingly concerned about my symptoms and angry about what happened in ED. So he called a rheumatologist for advice, contacted the Vascular lab telling them that I needed to be seen ASAP and ordered more blood tests. Almost every avenue has now been tested and was all coming back clear.
Vascular lab appt
The vascular lab (Dunedin) did a more comprehensive BP check of my whole leg (both sides) and arms (both sides). They were concerned about what they found so asked me to stay in Dunedin longer so they could do more tests.
Follow up testing confirmed that they had identified what the problem was. Remember a long way back in the story I had said I thought the problem was circulation / vascular related? Well it turns out I was right.
I have a blockage in the femoral artery (thigh). So all the pain in my calf and foot is being caused by the fact that my lower leg is being starved of blood/ oxygen. No wonder I can’t walk.
Emergency action needed
The vascular surgeon was really angry that I had seen so many people and no one had spotted this earlier.
What is even more significant is that the red foot/ cold combination is a classic sign of vascular issues that all medical professionals should recognise. The staff at the vascular lab asked could they take photos of my foot to illustrate this to their students as a valuable learning point.
The problem now was that the issue had been going on so long without being properly diagnosed that the nerve damage to my foot is most likely irreversible. I am probably also not likely to get movement back in my toes either.
The vascular surgeon was so angry she said she would follow it up with the original hospital as possible negligence.
I am now classed as an urgent case. They actually wanted to admit me there and then, but I didn’t have Mark with me, had not planned for more than 1 day away and my car was parked in a local mall car park so would get locked in/ towed away if I didn’t go back to get it.
The surgery that they will now need to perform is an arterial bypass. They will need to take a vein graft (likely from my left lower leg) and use it to replace the damaged section of artery in my thigh.
I will have a scar from thigh to ankle (🤯) and likely be in hospital for up to a week, recovery of 2-4 weeks following that before I can work. This needs to be done ASAP no later than 2 weeks from now.
How do I feel?
I’m kinda stunned.
And relieved they have finally found a cause that is at least partly treatable.
And angry, no livid – that so many medical professionals that I have seen failed to recognise it for what it was. If it wasn’t for my new GP seeing the alarm bells and agreeing with me, I might still be dancing around the medical system getting nowhere.
And absolutely raging… that because of all this, I will now most likely have permanent nerve damage and permanent loss of some function in that foot.
The extent of the permanent damage will not really be known till after the surgery is done. But, because there has been a blockage and therefore lack of blood flow to the lower leg for so so long, the chance of those cells recovering is very slim. Had this been picked up at the beginning when I first started arguing about it, the chance of a full recovery would have been much greater.
I now need to focus on the next step, the survey and subsequent recovery from that.
I also need to wrap my head around the fact that I’m now going to have a scar the entire length of my leg. That, for me is quite significant.
And yet more surgery. That fills me with dread.
But… perhaps – PERHAPS – after all this is over I can get back to actually exercising. Properly. I have come to realise that exercise is my therapy. I really struggle mentally when I can’t exercise. I feel like my road back to fitness has lasted for decades. I had not even really gotten very far at all post TKR before this new problem emerged.
And then there’s the rehab. I have lost significant muscle mass in my left leg. (Over 4cm off the calf alone.) So, the road back to fitness will be long and tough, with the TKR on one leg and the nerve damage in the other to contend with.
There have been times when I have been so down that I have even doubted my own ability to continue to be a personal trainer. Who wants a broken and disabled personal trainer after all?
But now I feel like I have been given at least a small glimmer of hope.
So I will now spend the next week or two till I am admitted for surgery mentally preparing myself for my new challenge.
Wish me luck.