Stressed - and stress fractured!!!

tillytop

Apologies in advance – major dummy spit coming. Just need to get this off my chest before I spontaneously combust!

I have had what I believed to be an osteoporosis related stress fracture of my shin for at least 10 weeks. For the first 6 weeks or so I hoped it would get better and did nothing about it – largely because I was already pretty immobile so resting it anyway and because I was unwell with other things and couldn’t deal with anything else.

But it seemed to be getting worse rather than better so I mentioned it when I went to the rheumatology dept for my Ritux infusion a few weeks ago and I asked whether I could have an x-ray. Doc suggested that I should wait to see if the steroid and Ritux infusions helped (quite how they would help a stress fracture I don’t know). She also said if I wanted an x-ray I could ask the GP to refer me (at this point we were sitting in an office not 100 yards from the x-ray dept!). I couldn’t at that point deal with the faff of going to the GP, so I decided to do as she suggested and wait to see if things improved after the Ritux.

Two weeks later, at my next Ritux appt (when things were still getting worse) I mentioned it again and asked, again, about an x-ray. It was a different doc this time and she was quite stroppy. Having prodded my possibly fractured shin (which nearly sent me through the roof) she told me she didn’t think it was a stress fracture and, even if it was “we know you have osteoporosis anyway”. The implication being, I guess that because I already have osteoporosis it didn’t matter! So I tried to be assertive and said I thought it did matter because something was definitely wrong and it wasn’t getting any better. I asked again for an
x-ray and this time her reply was “well if you are prepared to risk the radiation exposure...” so I re-iterated that I needed to know what was wrong, even if it wasn’t a stress fracture and then the real reason for her reluctance became apparent. She said “well I’m leaving in a couple of weeks, so if you have an x-ray I won’t be doing anything to follow it up and you will have to find out the results yourself and take responsibility for organising any treatment needed”. I said (through gritted teeth) that was fine and she filled in the x-ray request so that I could have the x-ray at the hospital whilst I was there. Result!

The radiographer said the results would be available in a couple of days, so I phoned the rheumatology dept after a few days to ask. The nice administrator said she would ask the doc to look at the x-ray and “let me know if there was anything to worry about”. I told her I needed to know either way please because something was definitely wrong. She came back to me the next day and told me the x-ray was normal but I was to be referred for an MRI scan. Excellent, I thought, progress!

When I had heard nothing about a scan appt after a week or so, I phoned the MRI dept to check the request was on the system and to ask about likely timescale. I was told that “the request hasn’t been prioritised yet but it’s likely to be about 6 weeks wait”. Because I was concerned that I was doing further damage to my shin by trying to walk, I felt 6 weeks was too long to wait so I spoke to a rheumatology nurse to ask for advice. She said “the doctor should be following this up” so I explained that the doc had said it was up to me to sort it. She wasn’t happy about that but said she would speak to a consultant for advice. Message came back that the original doc had stated “routine” on the MRI but that another doctor had now changed the priority and it would be about 3 weeks to wait. Actually, the MRI appt came through very quickly so I had the scan then started to try to chase the results.

After almost a week I was told that the MRI scan hadn’t been reported on yet (so they pay people to work on a Sunday, then don’t have anyone to look at the results apparently).

Finally, last Friday I had a phone call from yet another rheumatology doc telling me that (surprise, surprise) I DO have a stress fracture and she had spoken to the orthopaedic surgeon who said I needed to be fitted with an “air-cast”. Appt was arranged for yesterday, so my husband, bless him, took the afternoon off work to take me to the hospital for fitting the cast.

The technician put the boot on and showed me the “mechanics” of using it and asked what I had been told about how long to wear it, whether I should be weight bearing or not, and what arrangements had been made for follow up. I told him that I had no information whatsoever so he told me I needed to go back to rheumatology to find out.

So far, it has taken me almost 2 months, 3 hospital appts, more than 10 phone calls, conversations with/messages from 4 different docs, 2 rheumatology nurses and several administrators actually to get any help at all – and now, having finally got confirmation of the fracture, I have a cast I don’t know how to use – and which I can’t take on and off myself and can’t walk in because it is so heavy and gives me referred pain in many other joints!

I have a fractured leg for goodness sake – surely some help isn’t too much to ask?

If anyone has read this far – thanks. And a gold medal for anyone who has read this far and is still awake! Seriously though, I feel better for sharing. Just have to psych myself up to ring the rheumatology dept now and start the battle again. Hey ho.

Tilly xxx

dibdab

Bless you Tilly- it seems to me you have a very good reason to dummy spit! What a time you're enduring, I do hope that the rheumy dept can get you sorted for this soon- keep persevering and we'll be here ready to offer moral support and encouragement.

Deb x

tillytop

Thanks so much Deb. I have left a msg on the rheumatology nurse helpline so just a case of waiting (again) now.

Thanks!

Tilly xxx

dreamdaisy

I know that we have to keep an eye on things and more often than not do our own administration etc but ye gods. This is so far beyond the pale it can't be seen.

I have no wise words or any real comfort to offer but I hope you can feel a small spark of smugness somewhere in that once again you have been vindicated. You told them what was wrong, they ignored it, then in their own slow time came around to agreeing with you but then leave you high and dry. Twerps. I think it's time for tilly letters to be fired off to a number of head honchos and maybe even your MP. ((((())))) DD

Susiesoo

Hi Tilly - what a nightmare you are having and it must be so painful. It sounds like you need an extra dummy to spit. I'll see if my granddaughter can spare one.

I do hope you soon get this cast sorted. You are really going through it.

Oh, by the way, I am looking forward to receiving a gold medal. I promise not to cry during the national anthem.

Take care, Susie

tillytop

Thanks DD and Susie.

DD - oh yes, the letter writing is coming along nicely - in my head that is, not sure if I will actually send them although maybe I should cos I don't believe for a minute that my experience is unique.

Susie - medal ceremony timing has yet to be confirmed - but given that there are three medallists already (Deb, DD and you) I am afraid the gold medals will have to be substituted for chocolate ones Hope that's ok! Free tissues will, however, be provided to anyone who needs them.

Thanks again.

Tillyxxx

mig

Well bugger me Tilly how you seem to be in control i dont know,i was getting stressed just reading it through and i did every last word and didn't nod once.It just goes to show we sometimes know our bodies better than the doctors do.Huge hugs Mig((((()))))

Susiesoo

Tilly, chocolate is more than ok with me. I'm sure it will do us far more good than gold ever could. Not that I don't enjoy the odd nugget of gold, of course.

I promise to try very hard not to need the tissues when presented with the chocolate

Take care, Susie

fowls48

Oh Tilly


How Awful for you :shock: All that running around , your docs are Complete plonkers , I don't know how you do it , i would have thrown in the towell by now .Sorry you are in this horrid situation , you are the one that needs that gold medal

karen xx
P.s I did mention to mel we should have an arthuritis Olympics I'm sure some parts of my body would go flying through the air at some point

suzygirl

Tilly its a disgrace, which I know is no help, but it does make me outraged. I have a mini rant at the moment about how its the hypochondriacs who shout loudest and get the best care whilst the genuinely sick are forgotten.

I so hope you get through to someone who can help you. You are in my thoughts. (((hugs)))

Sorry I can offer no more help than rant along side you. :oops:

stickywicket

I have read it all and I claim my gold chocolate medal. Can I have it quickly please before I, too, spontaneously combust? (Though you do realise, Tilly, that they would look down at our ashes and say it was all a figment of our imaginations :roll: )

You have had - yet another - very tough time and I do hope you will find the time to take this further because otherwise it will happen again to you and to others. You would be an excellent person to do this as you explain things so clearly despite the spontaneous combustion.

I hope you get your boot sorted soon. I saw one a few days ago on a friend's daughter. She'd been diagnosed with arthritis in her foot and sent to the gym. It didn't help, in fact it got worse - unsurprisingly as it turned out she had two fractures due to osteoporosis.

If you need help with it I recommend finding a neighbour or two who could be called upon at short notice should the need arise. I find that, having such back-up in place usually means I don't need to use it but it does put my mind at rest.

dachshund

Tillytop
i'm so sorry you have had a lot of problems and now this.
i have the same across my hips the doctor said you've had it a long time.
take care.
joan xx

JuliaHod12

Dear Tilly

How you've coped with all this is a mystery to me........I would have had a complete melt down and anyine in striking distance would have felt the reverberations!

I am totally gobsmacked at the apalling service and care you have received :-(

The words i had in my head after reading your story are unprintable!

Hope all goes well with your air cast and it offers some relief.........and fervently hoping for much better care in the future xxx

roses1

Hi Tilly, i too read it all without a nod i am claiming my choc medal will need the tissues tho for the choccie melting as the sun has been out today

What a performance! Its YOU! who deserves the medal! putting up with all that! its a disgrace how you have been treated but you got there in the end.

Hope you get some help now with the cast and that the pain will ease for you.

take care and rest up (((((hugs)))))

Rose x

LignumVitae

Tilly, I read to the end, have my chocolate medal for me, you deserve it! Well done for keeping going and getting some sort of treatment from a reluctant bunch. It beggars belief why some medics think the way they do and how all those initiatives for 'joined up working' seem to displace common sense and action. Sending you much love and hugs, I hope it settles soon, you have done so well not to let this send you insane. Spit that dummy as far as it will go.
Lots of hugs and love LV xx

bubbadog

Bloody heck Tilly! You have the patients of a saint! I would have been pulling my hair out and screaming blue murder by now!! I always go straight to the consultants secretaries if I'm chasing something. You should have had the X-ray and scans in the 1st place, what if you had walked on it or made the fracture worse? what if by all this waiting you had done permanent damage? You are very lucky no help from that quack of a consultent! I'm so glad you have the fracture in the air cast now, and good luck sorting the follow up, if you have any problems call the consultant's secretary they seem to get things sorted quick! Take care Tilly, hope it mends soon! (((HUGS)))

tillytop

Thankyou all so much lovely peeps for your patience in reading to the end of my rant! And for your kind and wise words too.

I hereby present every one of you with dinner plate size chocolate gold medals - and a free box of mansize tissues each - just in case.

I haven't heard anything back from rheumatology yet (which is not unexpected :roll: ) so still not wearing my cast. They say they "aim to respond to messages within 2 working days" so if I haven't heard by the end of today I will try to pluck up courage to chase again tomorrow. Luckily the stress fracture pain is intermittent, rather than continuous, and annoying and uncomfortable rather than proper "grown up" pain so it is manageable. I think my frustration is causing me more pain than the fracture itself at the moment! Grrrrrrr.

As some of you have said, I think I really ought to make somebody in authority aware of the kind of "service" that is being provided. But I am concerned that any complaint would just make things more difficult for me at the hospital in future. I don't think an anonymous letter would help either because it's a fairly small hospital and I suspect I would be "found out" pretty easily.

Thanks again for your support - and enjoy eating your gold medals!

Tillyxxx

LignumVitae

Tilly

You genius - I love the comparison of pain and grown up pain! So accurate. I reckon you are within your rights to make a complaint and I can't see that they can really black mark you for it as an awkward so and so either. I know when I did that for my Grandmother with similar worries it actually opened doors, helped other people and meant that those in charge sat up and took notice so her care was never substandard again...hopefully that would be the case for you.

Love LV

PS you can still have my chocolate, bizarrely I have developed a chocolate aversion at the mo I thought that was impossible!

tillytop

Thanks LV - and thanks too for your chocolate! I really enjoyed it!

Well, now I am worried. I just tried the air-cast again to see if I really could manage it - when I know what to do with it - and it just confirmed what I already knew. I can't. Then the frustration set in again so while I was in the "right" frame of mind, I left another message on the rheumatology nurse helpline, this time explaining (as calmly as I could) how frustrated I was that I have had to fight for help every step of the way and that, nearly a week after finally getting confirmation of the fracture I still can't get the advice I need to move things forward. I really wasn't rude, but because I am not good at complaining (I usually just end up crying :roll: ) I am now worried that I have done the wrong thing and will be labelled "difficult" and that help will be even harder to come by. So now I am worried that they WILL ring me back! :shock:

Rhetorical question: why does it have to be so difficult?

Tillyxxx

Numptydumpty

Tilly, I've only just read this post. I was so gob smacked, I showed it to my husband and daughter.
I'm absolutely disgusted by the way you've been treated.
I hope you can stay strong and fight on.
Thinking of you,
Numpty

tillytop

Thanks Numpty.

Well the saga continues and I am sitting here feeling upset and thoroughly miserable.

Following the message I left on the rheumatology helpline yesterday evening, I had a call from one of the rheumatology nurses this morning. She apologised that nobody had responded to my earlier message – she had been away for a couple of days and thought someone else was dealing with things.

I explained that I now have an air-cast to wear but no information about how to use it. I said that the orthotist who fitted it indicated that I should only wear it for longer periods of walking but given that I haven’t been/am not currently walking for longer periods, there would be very few times when I would be using it. If that was the case then I needed advice about how the fracture was going to heal, given that I have already had it for at least 10 weeks and it had occurred despite doing very little walking, very slowly, using crutches. I then voiced my concerns about actually managing to wear the cast and my worry that I might end up with another stress fracture elsewhere as a result, and asked if maybe there was someone who could help me to “learn” how to walk in it without giving myself other problems, or making the existing fracture worse.

At this point the nurse told me that she was not the right person to be talking to about this because she knew nothing about stress fractures and she asked if I had the number for physio so that I could speak to them “because they must have come across people with air-casts before”. I said then that I felt I still needed some proper advice about how to use the cast, for how long, and about follow up arrangements and she said she would speak to one of the docs and come back to me.

A few minutes later she rang back to say she had spoken to a doctor and I should wear the cast only for longer periods of walking and for a minimum of 6 weeks and “see how it feels after that”. So I repeated all the things I had explained before and she said “oh well in that case you should probably be wearing the cast all the time” (remembering that, not 10 minutes earlier she told me she knew nothing about stress fractures and now she was completely overturning what the doc had just said I should be doing!) I explained again about the difficulties I found with the cast and that I really did need some help to learn how to walk with it, without causing other problems. To which she replied “well you really do need to wear the cast”. She then said maybe (?!!!) I needed to be referred to the fracture clinic “because they are the people who really know about things like this”. I said again that I felt I needed some proper advice and she said “don’t worry, we will make sure you get to see the right people”. But what faith can I have after all this malarkey? Surely if I have a fracture and the fracture clinic docs are the ones who know what’s what, I should have been referred to the fracture clinic in the first place, no “maybe” about it.

Then the physio rang me back and made me an appointment for next week (following the message I left for them yesterday). I told her what help I thought I needed (both RA wise and stress fracture wise) just to make sure she was the right person to be seeing and she said she was. So that’s the positive thing. I think what I will do is to leave the cast off until I have had some help from the physio and see where we go from there.

I am so very fed up with all this.

Thanks for listening.

Tillyxxx

dreamdaisy

Ye gods. What a shower of idiots, morons and twerps they are. Damn being labelled as 'difficult' etc, there are some serious service shortcomings going on here and it's disgusting that you are having to chase and harry and explain (repeatedly) about what has happened, what you need and my phone's ringing so I have to go. I'll be back later. DD

dreamdaisy

Right, I've had me natter and I'm back.

I'm cross. Very cross. Yet again you, the patient, have had to do all the work to get things moving towards help and then what they offer is so risibly off-target it's ludicrous. We have enough to be dealing with without having these extra pressures and nonsense being piled on layer after layer. I wish I could think of something positive and helpful to say but all I can come up with is that you will battle through this because that is what you do. You've battled before and (sadly) I reckon you'll be battling again but for the time being let this one go and try to have as pleasant a week-end as you can with the lovely Mr TT. ((((())))) DD

Numptydumpty

Dear Tilly, I'm so sorry you seem no further forward with getting the help and advice you need. I can't offer any solution, you seem to have done all the right things.
Try not to let the stress get to you too much.
Thinking of you,
Numpty

stickywicket

Of course you are fed up, Tilly. I agree with the others that your reserves of patience are amazing and all creddit to you that you are continuing to deal with this at a time when your reserves of strength have to be very low. You should not have to do this. You are taking responsibility because no-one else has done. Someone, if not everyone, should have done.

I think, if you leave this sort of thing, unchallenged, it will just go on. For my money you should enlist PALS on your side and put in a proper complaint. You have all the evidence documented here on the forum. You may worry that they will see you as 'an awkward customer' and treat you badly in future but, honestly, how much worse can it get? If you talk it over with PALS I think they will at least advise you. I would hope so. And, as they have no bearing on your future treatment, just getting some advice from them can't do any harm.

I hope you, and Mr TT, manage to have a good weekend. Rest the leg on a chair at some local pub/restaurant beer garden and return refreshed and ready for action on Monday.

tillytop

Thanks DD, Numpty and Sticky for your replies - really appreciate it.

Sticky, I have been thinking about PALS too - not specifically from the point of view of trying to sort my situation but more so that somebody in authority at the hospital knows what has happened and can hopefully make sure it doesn't continue to happen to other people. I'll have to be feeling a bit more "robust" before I take that route but I think it's a very sensible idea.

Thanks again.

Tillyxxx