i need a thr now

suzster

after suffering several possible hip dislocations with my resurfaced hip. i went to guys hospital yesterday. it's a long day because it is such a long way to travel.
any way it turns out that by resurfacing is loose because my bones are thinning, that's why i keep getting the clunky dislocating.
basically all the steroids i've taken and the injections to have made this worse, it has got alot worse since my appointment last year.
i now have to see another specialist and i will be having a revised op, well basically i'll have a total hip replacement in the near future.
it hit me like a tonne of bricks, was not expecting it to be so bad.
thanks to everyone who supported me yesterday, lots of you facebookers!!
sue

dreamdaisy

Steroids do have a deleterious effect on bone and you have found this out the hard way. I am so sorry, what a blow: you take meds, thinking they are helping, then they go and do this to you. How soon do they hope to operate on you? And will you go to London for it or have it done nearer to home? What a horrid thing to happen. DD

suzster

i know, this is why i wish drs and hospitals would look at us a whole not just the thing they are treating, if that makes sense?
if i'd of rea;ised how much the steroids would effect me i'd of thought more abd probably not of taken them. i know they have helped my ra, but now having to have another op on my hip and having the worry now of whether the bone will get worse. i'm worried now that if it does dislocate again it could cause the bone to fracture, something i've known was a possibility but having seen the x ray and the difference in my 2 hips / femurs, it is now a much bigger risk.
they told me that the waiting list is about 6 months. i'll have to have it done at guys because i already have a hip resurfacement which my local hospital know nothing about! they thought it looked fine on the x ray, they didn't notice the thinning of the bone, which when you look at it properly is very obvious!
guys have a several specialists who have done this op before and are very good at it! i trust them totally.

sue

dreamdaisy

I take a weekly dose of alendronic acid, in an attempt (possibly vain, who knows?) to stave off steroid-induced osteoporosis. Has anyone mentioned this drug to you? I am not a doc but it seems to me to be logical for it to be prescribed, to prevent further damage. I think having faith in the hospital and their staff is very important, so you stick with Guy's. DD

dorcas

Hi Sue,

so sorry you've had this news... I can well understand what a blow that has been. :roll:

you are at least in safer hands at Guy's.. and there's a lot to be said for trusting the surgeons who'll be operating.

six months seems a long time to have to wait... but what do I know?!
in any case it gives you time to prepare mentally/ physically so may not be such a bad thing.

meantime as DD said.... be kind to yourself...or, better still, let others be kind to you!

thinking of you Sue. keep your chin up flower.

Iris xxxx

barbara12

Hi Sue
Know wonder you are in shock, we go along for these appointments not knowing what the outcome will be.
Hopefully when you have had your THR, you will feel much stronger, and able to get about without the worry of dislocation
Sending you loads of hugs (((((())))
Love
Barbara xx

nearlybionic

Hi Suzster
Sorry to hear that you will need further surgery, but hope you don`t have to wait too long. Did they say that the THR will be safe from future problems with bone thinning re meds? It sounds like you have got a good hospital there with lots of experience and knowledge.
I hope that you are sorted soon and the risk of dislocation is soon gone for you, as from experience you really don`t want that to happen! :shock:
NB

skezier

Hi Sue,

I know you feel like you have been hit by a truck but like Iris said they will look after you and it does sound like you have a very good surgeon there.

Take a bit of time for your self and you will get your head round it flower. Sending a (((( )))) and keep posting. Cris xx

Hi nearly,

Just a (((( )))) xx

frogmorton

Hi Sue

I am so sorry to hear your news.

You will be totally shocked I am so not suprised.

I am glad youa re having it done at guys and hope the six months passes really soon for you.

Love and hugs

Toni xx

hileena111

Hi Sue
I'm sorry you've got that news but steroids can have that effect...My dil had an auto immune disease {sarcoidosis} nothing to do with arthur and they had her on such a high dose that her hip bones started to crumble and she ended up in a wheel chair but good news is shes back on her feet now.
What about DD's suggestion about the prevention of osteoporosis?
DD Is that the one that you take.....nothing on your stomach, not even drink and then nothing for another 30 mins and if you take it in the morni g which i did youmust stay upright???? Is that the one
Love
Hileena

suzster

thanks all, my parents are trying to be supportive but really they are not at all!
mum keeps saying that my rheumy shouldn't of prescribed steroids ect, but i know my rheumy was concerned abbout joint damage as my ra was not at all controlled and so the steroids were an attempt to get things under control, which they really have, although i'm feeling more pain again now i'm slowly reducing the dose!
but what do i do if my rheumy feels i need another steroid injection? do i refuse for fear of more damage?
i think a phone call to the orthopaedic nurse is needed on monday, she gave me her number and said if i needed to ask anything i could ring her, which is good to know.
dd, can you tell us anything more about the tablets you take to try to keep bone thinning at bay? it would be good to know so i can ask the nurse or my gp.
all i need to do now is get my painkillers sorted, my gp has been trying to get me off the morphine but with the pain i'm in it just isn't practical, i know again that she is doing it out of concern because of addiction ect, but now is just not the time, although to be honest will it ever be the right time?
sue

dreamdaisy

They are called Alendronic Acid. I take one per week, they have to be taken on a really empty stomach and one has to stay in an upright position for at least 30 minutes after. There are a number of different versions of them, and I think now there is an injected version, but I cannot remember the details of it. I am on them as a preventative, so I have no idea whether it's worthwhile or not. I used to have extremely good bone density, I suppose I should make the effort now to see what has happened to it, after being on daily steroid tablets for 44 months but I cannot be bothered.

I hooted with laughter when my consultant put me on them - I complained about having to take yet ANOTHER med and she explained I wouldn't want the pain of broken bones. Wrong. A different pain would be interesting and would take my mind off the arthritis pain! DD

suzster

that made me smile, thank you dd!!
true, another pain could make life interesting!
i'm seeing my dr asap, when i can get an appointment, so i'll ask about it then, goto be worth a try surely!
sue

ironic

So sorry that you have had such bad news. Not much help on the hip replacement side but wanted to wish you luck with your appointment.
Do hope that you get some answers tomorrow.

Lv, Ix

dorcas

Hi Sue

so good that you've been given a contact number for the orthopaedic nurse.... shows they expect you to call which makes it easier for you. good luck with your telephone call with her tomorrow

I guess too that she'll know about the allendronic acid and if not can find out for you!.

families do try to understand... but your right sometimes they can't and we need to be free to share how we feel and the anxieties we have out with the family... to spare them the worry too... that's what makes the forum so valuable to so many of us.

I hope you get some answers Sue... including advice about continuing on steroid injections. Difficult decisions but living with such pain is difficult too. :roll:

let us know how you get on?

Iris xxx

c4thyg

Sue, I'm so sorry that you have to go through all this. I really don't know how you juggle everything. You've been a good support to me and I hope that I can return the favour. Do you have any help with the kids? If not ask your HV to see what is in your area. I had Homestart for about 6 months and they were great. There are things out there but unfortunately they're not very well advertised.

I'm sending you all the love in the world and hope you get sorted soon.
(((hugs)))
xx

speedalong

Hi Sue, sorry to hear your news. Good job you went to guys ... since local hospital thought it looked ok! Six months sounds a long time to wait ... are you in a position to take a cancellation if one came up? Did they make any suggestions on how to cope in the meantime?

Speedy

suzster

6 months wait is because i need to be referred to another consultant who specialises in thr after resurfacing or 2nd thr on same leg, so i need to see him then he puts me on the waiting list. in the meantime i'm being careful, very careful, not much else can be done as the nurse said!

i have a lady come out on mondays from home start, she is a very good listener and sarah thinks she's great, so that has been a great help over the last few weeks.
i just bought a rollator type walker so i'm sure that will help save to much pain now sarah won't go in a pushchair any more!
thank you all again for your support, i really appreciate it so very much,
sue

speedalong

I suppose then, that is better to wait a bit longer and have an experienced surgeon who is able to perform this second op successfully. Hopefully if your referral is marked urgent you wont have to wait too long to see him and convince him you need to op asap. The homestart visitor sounds supportive and the rollator will make life easier once you are used to it.

Take care

Speedy

suzster

the home start lady has only been coming a few weeks but yes, just being able to talk to some one who isn't close to me, ie family, is really helpful.
i trust the ortho team at guys 100% so it is worth waiting. fingers crossed things will move quickly.
sue

woodbon

Hi Its funny, but having a different pain really can take your mind off the first pain! Not that I'd reccommend it!!! :roll: My Mum always used to tell me to pull my hair to make a migraine more tolerable for a few minites. It worked, but I gave it up because who'd fance a bald bird!!!! :roll:

Seriously I do feel so sorry that you have to face surgery agian it just isn' fair. But if it helps to make things better for you it'll be worth it in the end! Thinking of you, lots of love Sue xxx ((((()))))

c4thyg

Sue, I'm glad you've got homestart. I know what you mean about being able to chat to someone who isn't family. My volunteer really helped me with my confidence and I miss her. Remember as well that if you have any concerns your volunteer can get in touch with her office and there is even more support available if you need it.

I know what you mean about not having the pushchair anymore. I found it hard having to walk with Meg in the beginning and was surprised how much I used the pushchair as a support. I do the same with the shopping trolleys! Sarah will learn quickly to walk nicely by your side and not drag on your arm. Meg is now at the age where she knows that Mummy doesn't do some things and we do them differently. Sarah isn't far behind.

Good luck with your referral. I would do the same thing and hang on for a Dr I was confident with.

Just had a thought, have you told DLA that your condition has worsened? If you haven't already got high rate mobility and care you might get that revised and the extra money would be useful while waiting for your op even if you use it to pay a cleaner now and again. Don't forget to tell them that you now have Homestart as that shows that you've already been assessed and qualified there.

Take care Sue and I'll see you on FB.