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Sickle Cell Society
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Symptomatic sickle cell trait

I recently had minor surgery on my great toenails; bilateral partial avulsion. They removed the ingrown portions of both of my big toes.

Had the surgery on Wednesday morning, by evening I needed tramadol for the pain. I was booked in for a routine follow up for the dressings to be change on Friday afternoon. By Thursday I couldn't bear the pain and booked in to have the dressings changed.

The dressings, which were meant to be able to "slide" or "pop" off needed to be cut away as they had become so tight and painful. It was very bloody underneath. On the day of the surgery the ice spray had felt more like burn, and my wounds had bled a lot to the podiatric surgeon and his teams surprise. Similarly, the podiatrist who changed the initial dressing on Thursday, was quite shocked. As was the podiatrist who changed the follow up dressing on Friday. I wasn't.

Basically this 'never' happens with this routine procedure. The pain is usually easily managed with paracetamol. And most people's dressings stay on two days with no issue. They only need to keep their feet, up 2-3 hours, and by the next day they are back on their feet the next day. After the first dressing change they can often wear shoes or at least hard soled open toe sandals.

At this point I will mention that I have a 38.3% sickle cell trait. I mentioned to the podiatric surgeon that I have a trait and that I often suffer symptoms of the disease. He said that he wouldn't be able to continue with the procedure if I have sickle cell disease or experience crisis. Well I have a hematologist appointment in the new year but I'm not confirmed to have sickling crisis so we went ahead. Also apparently if you have sickle cell disease and require this procedure, tourniquets cannot be used. Well tourniquets were used in my procedure.

In my life I have had five surgeries I think. Each time they have become infected/complicated/failed to heal. It is Sunday, I am back on tramadol, and still cant wear flip flops anymore. The antibiotics are struggling to work, and life has not returned to normal. I had a quiet understanding and silent expectation that this could happen, but I allowed the "statistics" and the surgeon's confidence to reassure me to go ahead with the routine ingrown toenail removal procedure.

I've ended up having to call 111 twice. I feel sick and nauseous and mildly feverish on top of going between cocodamol and tramadol the dreadful pain. During the dressing change on Friday, I had been given an iodine wrap on the toes and told to get antibiotics and call 111/go to Urgent Care or A&E if I feel any worse. It's the weekend and I am wanting to go in p but I would hate to go in and not, be taken seriously. The procedure itself was free, but it has cost me a lot in cab fares and takeaways since I cant stand up to cook. I'm doing my best not to regret it, yet I am frustrated/at a loss as to what it would take for things to have possibly had a better outcome.

Probably if I had confirmation of sickling crisis this would have been done in a hospital with more specialised care, but no. Instead I'm out here looking crazy because I experience obvious sickle cell trait crisis', and have symptoms of sickle cell anaemia but am without diagnosis, which is apparently as good as suggesting I have a pet unicorn in my parents back garden. Lol.

2 Replies

If you feel feverish and think you have an infection then don't wait take a taxi to A&E NOW.

Mention to the A&E doctor you have issues every time you have surgery and aren't sure why.

Let them check if there is any other reason why you aren't healing properly don't mention sickle cell trait at all. There could be other things wrong with your blood cells plus you could be nutrient deficient - commonly iron and vitamin D - along with the sickle cell trait. If you simply tell them you have sickle cell trait then they don't do proper investigations to confirm you don't have any other issues.

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I found this extremely interesting. I never thought I'd ever have any sickle cell disease symptoms, having only sickle cell trait, but this experience has proved me wrong. I have been having X-rays (several) in case of blot clot and/or arthritis, and have more or less been told I am wasting the doctors' time because the X-rays showed no problems. In fact I was told that I had 'very strong bones', and I was treated like a poor little old duck who was losing her mind. I questioned how could I be in pain if there is nothing wrong, and was told to take more exercise! This experience, SusieWithAnInterest, proves I was not malingering and has given me the courage to fight. Thank you, Susie, and best wishes for a good recovery.

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