I started having trouble again around 2 weeks ago. First it started with occasional foot pain, then I started to notice other things. I immediately knew something was wrong.
When the foot pain started, it was a few days after the pico (surface suction) dressing was removed for the last time. I had worn a light compression sock that the surgeon gave me at my 2 week follow up appointment. I only wore it for a few hours one day: later in the evening when I came to remove it I noticed it had rolled down and because I have no feeling below the left knee, I had not even noticed. I took it off and never wore it again because I was concerned about the tourniquet this would create and I wouldn’t even notice.
That evening the nerve pain started again in my foot. To begin with I hoped it was just because of the sock and that it would go away. But it didn’t. It stayed and got gradually worse.
- Nerve pain in the foot, that was worse when I had the leg parallel to the floor, and was worse at night.
- Hypoxia calf pain that did not recover quickly with rest, like it used to.
- Reddening of the lower leg (but not warm) when seated with feet on the floor for more than a couple of minutes.
These are all signs I have seen before: they are all signs I started with right at the beginning of this journey.
As you can see, the reddening is not as bad as it once was, when the blood flow to the left lower leg was completely cut off prior to all the surgery. But it’s there and it’s clearly noticeable.
What do I think is going on?
Based on the fact that the symptoms are not chronic, the pain isn’t sudden and unbearable, I did not think that the artery had completely occluded. I did think that the blood flow to the foot had become even more reduced. But I did not know why. I said this to Rossi, the house surgeon when I called Dunedin hospital. I also told my GP this when I saw him this week.
The medical staff were worried enough to create me an appointment in the very next vascular outpatients clinic, just a few days later. This time though, it was with a different surgeon. But that might not be all bad: the more heads on this, the better in my opinion.
The appointment with the surgeon
The surgeon did an ABPI reading. This tells us what the measurement of blood flow is like to the leg compared to the other limbs. this has been done on me many multiples of times. Before the first surgery, the reading to the left lower leg was zero. The reading in the lower leg should be 1-1.4
After all 4 emergency surgeries they had managed to restore half of the blood flow to my left leg. It was the best they could do and only time would tell whether it was enough. (A reading of 0.5)
At my two week follow up the reading was 0.38.
The reading was now 0.33. Obviously this downward trend was concerning and if you look back at what I thought was going on, I was spot on.
What we do not yet know is why, or what has happened.
As you well know if you have been following this journey, my options to save this leg are running out. Jo the surgeon said she understood how upset and distraught I must be feeling, how totally over all this I must be with the uncertainty of it all and the not knowing. But she thought there in fact was something else that they could try.
1. CAT scan
This is to look at the vascular system and try and identify if / where any additional blockages might be. I have had these before, they are done with an injected dye which lights up the blood flow in the scanner.
They are aiming to organise one for me next week at my local hospital.
2. Vascular Ultrasound
I have also had these before – many times. These are done at the vascular lab in Dunedin Hospital. The ultrasound probe shows images on the screen so they can look at the graft and the collateral blood flow created by the clot we already know about in my ankle. They can see where blockages are and can measure the diameter of the vessels. They can also map out where the vessels are, if this is needed for further surgery.
They are aiming to organise this for the week after next.
I have not had one of these before. But as I understand it, they are done under a local anaesthetic. They enter the vessels with a probe, and with a combination of x-ray images, look for blockages, and are sometimes able to clear them using a range of options including a stent or a ballon, or by inflating vessels.
They are hoping to organise this at the same time as the Vascular ultrasound.
At this point I have a decision to make. Do I stay in hospital and try an Iloprost infusion?
This is a drug that I have been given before when I was last in hospital.
It is usually given to people with severe arterial occlusion and who might be at risk of losing a limb. it dilates the blood vessels and in my case they hope it might alleviate the foot pain that I have.
Questions that I have about Iloprost
- I have had it before. So what is it’s half life? Does it simply stop working after the infusion has stopped? Why do I have this problem again if I have already had this drug once?
- Was this a drug that was keeping me in the high dependency unit? Looking at its details on medsafe and relying on my memory of what happened in hospital, I think this might have been a drug that kept me in HDU because it has to come with regular blood pressure monitoring.
If that second point is actually the case, I seriously do not know if I can go through with it. The things I saw while I was in HDU were so very traumatic it has been life changing for me. I simply cannot put myself through that again. I am willing to do almost anything to help save this leg. But not that. For fear of the further damage it could do to my mental health.
And after all that, then what?
We wait. 4-6 weeks after I have the last procedure in the list, we revise the position again. If it had alleviated the pain to a tolerable level, then we leave it for now.
The danger zone is the first 12 months post vascular surgery. If I can make it to the 12 month mark somehow, the critical limb issues I keep having should then pass and I can start rehabbing and building my life back up.
If this has not alleviated it and I still have the same pain issues in 4-6 weeks, then we have to have the below the knee amputation conversation.
How do I feel?
Absolutely devastated that I am back here, again.
The surgeon was right. I have had a lot of time to think about things and I have almost made peace with the idea of losing a leg if that’s what it comes to.
The most difficult part for me is the here and now. Not knowing. Having no control over anything. Not being able to physically do anything to improve my situation. Not knowing what is going to happen. Not knowing a time frame. Not knowing IF I will ever be able to work again in the field that I used to work in. Not having any type of meaningful life content because I can’t walk, I can’t swim, I can’t do anything at all.
So devastated doesn’t even begin to describe how I actually feel right now. It doesn’t even come close.