Help-amputation?

Well 20 wks in a cast to try and fuse my broken ankle AND hindfoot nail fusion, has not worked.(It all broke 6 wks after walking in orthotic shoes following 10+months in cast/airboot) Now waiting another 4 wks to see the surgeon to discuss any options. Plumping for amputation below the knee - drastic I know, but the nail up my shinbone is very unlikely to be removed, to allow an attempt at another fusion using external fixators.And I have donor bone since mine is missing from two previous ankle replacements. Besides which it has already taken up almost 2 years of continual care all to no avail. (Husband retired early to look after me) Family life is on hold - we have three grandchildren- and its difficult trying tp plan anything. O.K. - suggestions PLEASE?! I'd welcome feedback from a rheumatoid amputee especially. At the moment I cannot get out of bed until my lovely husband has put my airboot on for me; will it be so different if its a prosthetic leg that had to be put on? A very big decision to make, so I'm gathering all thoughts/ideas/suggestions. THANK YOU Hopalongx

[tiger]

It must be a very difficult time for both you and your family, especially after all that you have been through. I take it that as you are writing about the amputation option, this is one of the options that the surgeons have already discussed with you.

I am not an amputee but as a nurse I know that there are fantastic prostheses out there if you did have to have this option. Also it is my experience that you would get fantastic support whilst getting used to your new limb.

Is your RA under control? I know we can flare at any time, especially if under stress.

You sound very positive about all of this, as you mention that you 'can't get out of bed without the airboot and is that so different from a prosthetic leg - a good attitude to have', A good frame of mind to start with will hopefully help you to cope with what lies ahead.

A HUGE decision so I would like to send a HUGE hug of support across the internet to you. Take care. Wendy xx

[Hidden]

Hi there, I am also not an amputee and have never had to make this decision, but like Wendy said above, you have a fantastic and positive attitude. I would imagine you are possibly in a lot of pain at the moment, and I would imagine removing the limb would help with this.

I understand where you are coming from with the grandchildren, I have 3 and they grow so fast you want to be a part of their lives.

With your sunny outlook I can only imagine this wouldnt hold you back, in fact it would make life better for you.

If it was me, I would opt for amputation too.

Good luck with it all, whatever is decided. Take care. Petra xxxxx

[helixhelix]

What a decision...you're very brave to be asking yourself these big questions. Have you given the NRAS helpline a call to see if they can point you towards others in similar circumstances? No doubt there are loads of things to weigh up, as I can't imagine that having such a major op as an amputation is going to bring other questions with it.

You must be amazingly resilient to have managed through the last 2 years, so it doesn't sound as you'll leap into anything without thinking it through carefully so I wish you all the best during this difficult process. Take care. Polly

[Hidden]

Ditto to what the others have said - not an amputee or anywhere near it myself but if I was looking at this possibility I would like to try and be even half as brave as you sound. Take care of yourself and good luck - and yes do phone the NRAS helpline as Polly suggests. Tilda xx

[Hidden]

A BIG THANK YOU TO EVERYONE for all your responses!! Never thought of phoning the NRAS helpline....... If I could have some sort of guarantee that my ra would be stabilised, I'd have no hesitation in the decision- I'd opt for amputation (all pain removed in one fell swoop, so to speak!) but the thought of coming off my ra drugs for the operation is the worst part for me. The cimzia I began in February seems to be kicking in now. My other problem is that I have degenerative lumbar problems - MUCH more restrictive and painful than the ra!! I've 3 wks till I meet the surgeon and am managing (so far) to walk around the house in my airboot-so I would hope to continue this as long as possible.(Methinks it can't do any more damage!!) My husband and I are considering taking a holiday abroad before any operation, since we know what we're coping with at the moment. Are we mad?!! You never know what life throws at you though, do you? Maybe that's a good thing!! Thanks again to all of you kind folk, Kath (Hopalong) xxx

[Hidden in reply to Hidden]

Wow how brave are you.too be sounding so positive with such a big decision to make!

I too have degenerative lumber problems and I agree this causes more mobility problems for me than the ra does. As standing still for just one minute can give me immense pain, and this is the reason I use a wheelchair most days.

Really wish you all the very best with the huge decision you have ahead off you.

Take care

Julie X

[Hidden in reply to Hidden]

Hi Julie

I take it that you have ra too- what relief do you have to help you cope with the degenerative lumbar problems? No-one seems to realise just how painful/frustrating this is, do they?! I'm just told that I have to live with it!! I'd welcome any tips or advice of how to cope? I do try and explain how debilitating and painful it is, by telling "them" that walking round with a broken leg for 6 wks without realising it was broken (thought it was a RA flare-up) was nothing compared to the back pain! Thanks. Hopalong

[Hidden]

Very brave of you good luck in your decision, I would be guided by your surgeon it might not have to be amputation?.. wishing you all the best x

[woodlandfolk]

Hi,

I was in a similar situation to yours a few years ago. I was a permanent wheelchair user & couldn't stand for more than a few seconds as my foot had collapsed so badly that only my inner ankle bone was touching the floor & any pressure on it was intensely painful. I reached a stage where I was BEGGING for amputation -- it seemed like the most practical solution & I was genuinely looking forward to it.

Luckily, I was referred [after a final assessment for amputation] to a highly skilled surgeon who took my foot & ankle apart - almost by each bone & ligament.

The titanium rod up through my tibia stops only a few centimetres short of the descending steel prosthesis from my revised knee replacement but I'm happy to say that all of this 'last chance' surgery seems to have been successful. I'm convinced that this is because I was referred to a highly specialised surgeon who is based within a centre of orthopaedic excellence.

My only suggestion would be to ensure that all orthopaedic possibilities have been explored before you reach a final decision.

Also, your rheumatology consultant should be able to confirm that s/he has researched this specialised field on your behalf.

I'm aware that I've been far more fortunate than you & I sincerely hope for the best outcome, whatever your decision.

With very best wishes,

J.

[Hidden in reply to woodlandfolk]

Thank you so much for this information- I greatly appreciate it. It's another two weeks before I see my surgeon (the one who did 2 x ankle replacements and the fusion) and at the moment I'm managing to get about the house in my air boot - not knowing if any further damage is being done! In my mind I could live like this!! When I've seen him I may contact you again if you don't mind? I see the area you are from, was the specialist surgeon far from you? I'm Shropshire based. Thank you again. Hopalong.

[woodlandfolk in reply to Hidden]

Hello again,

You'll already know of the Robert Williams & Agnes Hunt Orthopaedic Hospital at Gobowen, near Oswestry, as a widely recognised centre of excellence for orthopaedic surgery where many of the senior surgeons specialise in just one area, eg foot & ankle. Mr Simon Hill undertook my challengfing surgery & he was always realistic about the pros & cons of the outcome.

I'm aware that, as a resident of Shropshire, you may already be in the care of a surgeon at Gobowen, in which case your only option would be to ask for a referral to a specialist senior surgeon prior to a final decision. You're quite entitled to ask for a second opinion & it shouldn't cause any difficulties. Given my own experiences, I'd suggest that you request a consultation with Simon Hill.

I'm sorry that I can't be more helpful but please feel free to

contact me at any time. NRAS can put us directly in touch with one another if direct contact would be easier for you.

With kindest good wishes,

J.

[Hidden in reply to woodlandfolk]

THANK YOU SOOOOOOOOO much!!!

[woodlandfolk in reply to Hidden]

Good luck!

If you have a spare moment, let me know what happens. You're facing a horrible dilemma & I sincerely wish you well.

J. X

[Hidden in reply to woodlandfolk]

Just thought I'd update you re my failed ankle fusion. Two weeks ago I had all my pre op tests -but have no admission date yet- and have signed the concent form for the surgeons to try thier best to do a revision but failing that an amputation. This will be decided once they open up my ankle, so I'll wake to find out which op has taken place! They told me to expect to be called in for the surgery at the end of October; but the admissions staff have told me it will be the week before Christmas. I await the true date. At the moment I'm feeling angry at the injustice of foreigners in our jails having surgery while they fight their deportation....what an injust world we live in. But this anger is keeping me going in an odd sort of way!! Hopalong.