Amputation as a last resort?

worriedmum

Hi everyone, I’m here on behalf of my daughter (background JIA since age 2, now 17, five failed surgeries for ankle erosion fused 2019 and failed as now OA in neighbouring joints - subtalar joint. Offered secondary fusion but outcome may be poor. Subsequent poor function and constant pain and poor quality of life, depression, self harm, suicidal intent….) So, although when it was first mentioned I felt like we couldn’t consider it, it’s become clear that she cannot accept a life of pain and would rather lose her foot. Surgeons don’t have another definitive solution and would consider it to improve her QOL and functional capacity. I don’t want her to lose her foot, but rather that than her life. 🥺

I wondered if anyone would be able to share any insights or experiences of what seems like an unattractive but definitive solution and ultimately one which might have to be entertained. Thank you.

Lane

Hi @worriedmum

I understand that your daughter JIA since 2 years of age. While you wait for other members to answers your questions, I have attached a link from our website:

https://www.versusarthritis.org/about-arthritis/conditions/juvenile-idiopathic-arthritis/

We have a dedicated Team and if would you like to be contacted by them? Please let me know if you are interested then I can arrange this for you.

Best wishes.

Sheelee

Hi worried mum,

Phew. What a good name for your circumstances. Luckily for me, I don't have any personal insights into your situation, though I know a number of people who have had amputations.

I'm wondering if there is an on line support network for people who may become, or who are, amputees? I just wonder if something like that may give you a lot of information.

Thinking of you and your daughter ❤️

Sheelee xx

stickywicket

What an awful situation to be in! As a mother and grandmother I feel for you. As someone diagnosed with RA at 15 I feel for your daughter. Young people today face so many pressures to conform.

I think you're doing the right thing by trying to get all the info you can. Personally, I'd want the orthopaedic chap to be consulting with her rheumatologist. I don't know how badly the rest of her joints are affected. With me, ankles came straight after fingers. I'm wondering how her other joints would withstand a prosthetic foot. Possibly no worse than an arthritic one but I'd still ask the question. Also, how does she cope with the pain elsewhere?

I'm also wondering how much research your daughter has done on prosthetic feet. Presumably she realises she won't be like paralympians who have perfect, very strong bodies apart from that one area.

For me, the main thing would be that the consultants must consult with each other to ensure that this really is what is best for her.

I hope that you, too, have plenty of support.

worriedmum

Thank you. The surgeon and rheumatologist are not really working together as her other joints are (thankfully) well controlled on Tocilizumab. Rheumatology have more or less said ‘don’t want to know about the ankle’ and very much see it as an orthopaedic issue. You’re right though, there has to be some more joined up thinking about what, if anything, we do next.

Tbh, we’ve only been presented with this as a very last resort kind of thought process at present and they’re likely to offer a secondary arthrodesis first. The outcomes are rarely good and so I’m trying to get ahead and consider all options as I’m not sure can withstand more failed surgery.

I’ll continue doing more research- thank you for your thoughtfulness. x