Toe update #3: Just got back home from my appointment... - NRAS

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Toe update #3

wishbone profile image
23 Replies

Just got back home from my appointment at the fracture clinic. The big toe is dislocated but there are no breaks anywhere. The consultant said that providing I can walk reasonably ok, then he would prefer not to operate because of my RA. He went on to say what a terrible disease RA is, and if surgery is performed then complications can arise due to things such as skin condition, not sure why..perhaps something to do with elasticity or the healing process(?), plus the weird types and combinations of medication we take and lung disease. His biggest concern seemed to be post-op antibiotic resistant infections. I think he mentioned one or two other things but I can't recall what they were...that was more than enough anyway! He did say that if my feet deteriorate further then he would operate, but only as a last resort.

All well and good I suppose, at least as far as deciding whether or not to have surgery goes. Even though I'm only too aware of how bad a disease RA can be and knew there was some risk involved with surgery, I found it quite depressing hearing a consultant, other than my rheumy, actually telling me what a terrible disease RA is then reeling off a bunch of related negatives. Think I would have preferred having to decide whether to have surgery or not.

Not that I'm complaining as it can only be a good thing, but it does seem a bit odd how I was seen so quickly when it was nothing urgent.

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wishbone profile image
wishbone
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23 Replies
Gigi71 profile image
Gigi71

Thanks for the update wishbone. Glad no bones broken for your sake, have dislocated a shoulder 5 years ago, was pretty painful, not sure about toes but still, did he put it back??? I have severe RD and never had that said to me, must be who is prepared to do it. He can't be up to the job. All the best for recovery of this mishap for now. Stay off the wine gums. X

wishbone profile image
wishbone in reply to Gigi71

No he didn't put it back and said the dislocation was due to RA and not trauma.

Maybe my toes are not as bad as the out of hours nurse and doc thought when I was there on sunday, and not as bad as I thought either come to that. If I had hobbled in to see today's consultant in obvious pain then perhaps things would have been different. Guess he doesn't think surgery is necessary yet and I can easily live with that.

Gigi71 profile image
Gigi71 in reply to wishbone

All that matters is you are okay with that. Looking at your reply to Norisa, your medical history makes a lot of difference, even more reason to have got it checked though. Take care. X

AgedCrone profile image
AgedCrone in reply to wishbone

Hi WB....When you are feeling up to it why don't you look around & see if you can hear of a really good speciality foot surgeon.....ask your Rheumy, mine referred me to the surgeon who operated on my feet.

When I asked if I could wait he said the sooner RA damaged feet are fixed the more likely there will be a successful outcome.

It's a long old process, but I'm glad I had it done.

wishbone profile image
wishbone in reply to AgedCrone

Hi AC, No doubt you are right that the sooner RA feet are fixed the better, but after listening to what the surgeon had to say regarding infections and antibiotic resistance, which was already a big concern of mine, I think it's best to hold of having surgery for as long as possible, and it's not as if I'm in a lot of pain when I walk providing I'm careful not to overdo it. The surgeon's keeping me on his books just in case things get worse in time to come.

Follow up at fracture clinic is usually very quick as they will have a radiography report by then and sometimes need to belatedly whop a plaster on something. He doesn't fancy operating, maybe someone else would. Sounds a very dreary appointment as you are very aware that RA is no fun. Hmm

wishbone profile image
wishbone in reply to

I would think he had a quick look at my medical history. Maybe seeing that I've had antibiotic resistance issues in the past and was hospitalised with sepsis following minor surgery is why he decided against surgery. I'm ok with that as I said to Gigi above, if I was in serious pain then no doubt things would have been different. To be honest I feel a bit of a wimp making all this fuss.

just re-edited

in reply to wishbone

Oh not at all! If you had done nothing you could have been in more trouble down the line. Best to have it checked out.

Mmrr profile image
Mmrr in reply to wishbone

wishbone, considering your history with previous surgery and the fact that you can walk reasonably well leaving surgery for now seems worth some consideration.

You now have a reasoned opinion from the surgeon and of course if you change your mind you can always ask for a re referral. Remember surgeons are trained to perform surgery (!) The fact that he is saying not now is worth considering seriously.

wishbone profile image
wishbone in reply to Mmrr

Think I mentioned that the risk of getting an infection was a big concern in one of my previous posts...been there done that wore the t-shirt as they say. So don't think I'll risk getting another one if I can avoid it. As I mentioned to AC, the surgeon did say that I will remain on the books in case surgery will be needed in the future.

Hessie5 profile image
Hessie5

Hey Wishbone, interesting. I know surgery is the last resort - I saw a foot surgeon today who said they like to consider physio and insoles etc - It's so hard to exercise with pain. I am looking to take up swimming. Hope things get better for you. Hessie 😊

Mmrr profile image
Mmrr in reply to Hessie5

I saw an NHS specialist rheumatology physiotherapist who gave me feet exercises that have helped a bit. Particularly helpful were the ankle strengthening exercises. I have very sore feet , but managed the exercises with little trouble. It might be worth asking for a referral.

wishbone profile image
wishbone in reply to Hessie5

Hey Hessie, the surgeon did say about having insoles made. I had some made by NHS podiatry about 5 years ago and while they did help to begin with, I recently stopped wearing them as I felt they weren't much benefit. My current boots with memory foam inners are more comfortable. Hope you enjoy taking up swimming...good for us rheumatics I believe. No use to me though as I can't swim a stroke. :-)

wishbone profile image
wishbone

My rheumy retired in august and we are still waiting for a replacement. When they eventually find one I'll ask about physio for my feet.

Well I suppose it’s good that a professional recognises it as a serious disease unlike its generally poor public profile. That’s what I find the most upsetting aspect of having it, we know how bad it is but it’s misunderstood or trivialised by others I think.

Glad you saw someone quickly wishbone but can’t they even do anything about your dislocated toe? I know you say you’re still walking but must be v painful 😖 (my lovely daughter dislocated her finger a while back, ouch) have you shown feet to your rheumatologist yet; maybe they’d have other options: they must deal with those issues all the time. Good luck with it all x

wishbone profile image
wishbone in reply to

Too true it's good that a professional recognises it as a serious disease. I never felt that a surgeon for another health condition I have ever did. Obviously I'm aware of the problems that RA has caused me, but for some reason I found it a little disconcerting hearing this surgeon giving me the reasons why he would prefer not to fix my foot. It made me feel very vunerable and hit home what crappy health I'm in, something I tend to box away in the back of my brain and try not to think about as many of us no doubt also do.

He never said any more about the dislocation. My other big toe looks much the same so that must be dislocated to. It is a bit painful when I walk, obviously the further I go the worse it gets, but I'm pretty good at keeping within my limitations. We're a tough old bunch us RDers, we get used to living with pain and soldier on regardless, whereas many ordinary healthy folk would be laid up on the sofa phoning their GP for an urgent home visit. :-)

in reply to wishbone

Know what you mean. Only time I’ve ever been struck with how awful it is is when just before diagnosis when I read up everything I could on it 😮 I hadn’t got a clue what it was before; sometimes wish I still hadn’t heard of it. Brings it home a bit reading yours; hope there is something better they can do for your poor feet soon, take care x

wishbone profile image
wishbone in reply to

Thanks Kerena,

I used to be a stickler for burying my head in the sand. Not always a good idea, but wish I'd done so when I googled up the RA related lung condition that I'd just been diagnosed with!! :-( I rarely mention my particular condition and try to avoid reading members posts who also have it. Might sound daft and a bit selfish to some folk, but I don't need reminding about it and hearing off others, perhaps in a worse condition, what could lie ahead for me.

in reply to wishbone

Really sorry to hear that wishbone, that’s awful; it’s a constant worry. My rheumatologist never seems concerned about breathing issues? Don’t blame you for trying not to dwell on it either, take care of yourself xx

wishbone profile image
wishbone in reply to

You take care to and thanks for the kind words.

nablur profile image
nablur

It sounds

Like they are looking out for you with the Antibiotics, but did they offer a solution that will help your toe? Maybe a boot?

wishbone profile image
wishbone in reply to nablur

Just to ask my rheumy about orthotic insoles, but I've been wearing them for years until recently buying boots with memory foam inners, which are more comfortable. Maybe I should ask about new ones when they find a replacement for my rheumy who retired in august.

I've just heard on the radio that they've discovered a new antibiotic they claim will combat at least some of these resistant bugs...it might come in handy one day! ;-)

Gnarli profile image
Gnarli

Well, given your health issues it was probably the best you could hope for I suspect. Hearing a professional from a specialism other than rheumatology tell you how serious RD is gives me the heebie-jeebies too although I have to fight the urge to let him show me how to suck eggs. Yeah yeah, I know and wish I didn't. Wishing you well

J

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