Upcoming Appointment

elainebadknee

Hi All

As anyone who knows me will be remotely aware that im off to Wigan for a second opinion after only being given the option of a kneecap removal at my local hospital. I tried in vain to make the consultant at local see how much life has changed and did my best to get constructive advice or answers from him but it was like trying to knock down the Great Wall of China with a toothpick! I could only find one story on here to say that kneecap removal had worked for one person but they said they had to give up work within 18 months and also were walking fully aided all the time and I did not see that as an acceptable situation to put myself through.
Im wondering how to broach this subject to the new consultant. Im also fearful he will have read previous consultant's notes and recommendations and will maybe be of the same mindset as his predecessor, if so my time and his will be wasted. I dont know do i go in cheerful and state that i have accepted my leg is like this or do i go in absolutely sick to the back teeth of my situation and how i feel in every aspect? I dont know what is for the best but one thing i know for sure is that it is slowly wearing me down bit by bit physically and mentally.
If this new person doesnt give me any advice then I will be really disheartened. I have mentioned a person up in scotland who needs 2 new knees as he is a waste disposal driver and cannot get into his cab at all now...he has been told he can have surgery if he loses about 3 stone and he is only about 4 years older than me....I have never been told this option is available to me even though i would have to try slimming tablets to achieve this i would do it.......I am told age is my only obstacle and to be honest if they tell me that again im gonna scream.....
Advice or comments would be good, another head always sees things differently...

Elainexx

dreamdaisy

All you can do is tell him the truth about how you feel. All he can do is tell you the truth about the options. A replaced knee isn't presumably going to stop the problem with the cartilage and if you do not have enough dead areas of bone I don't think you will be offered a replacement, but then again I am not a consultant. It's no fun having a rare condition, just as it's no fun having a common one. I wish you well. DD

grampyal

Hi Elaine,
Sounds like you're not happy with good reason. I too get the impression that the consultant just isn't on my side. Don't know your history and what you've had done but after my tkr didn't come up to expectations the consultant said the problem could be with my kneecap as he used my old one in the new knee. He went on to say that he preferes not to replace the kneecap with an artificial one as they dont work as well as the original. Removal has not been mentioned. Our problem is that they are (supposed) to be the experts but then again they are not the ones in constant pain so don't appreciate how important their actions are to us. I think you are wise to get second opinion. Go full of optimism but question the consultant fully giving him all your thoughts and concerns because its you who will live with the concequences. I try and its not easy, to hold the opinion that the consultant is being employed by me( even NHS ones) so should be doing the best for me. Best of luck with appointment.

dorcas

Hi Elaine

What would be the point pretending to be cheerful when your knees have been causing you such constant pain and the advice offered by the local hospital been so unhelpful and dismissive?

it really doesn't matter that the new consultant has your records.... he already knows that the cartilage op is not an option you want to consider which in some ways prepares him and you to discuss what other procedures/ ops might be more appropriate.

tell it how it is EBK ..... write it all down.. how you feel... how the limitations and pain are impacting on almost every aspect of your life.... what you know of other knee op procedures and whether they would be an option for you.
tell him that you are your parents' carer and need to have your mobility restored in order to be able to meet the demands that their growing fragility will place on you.

when's the date of your appointment?... you know we will be with you to support you EBK ... and also if you forget to say anything we can poke you in the ribs as a reminder. what are friends for?

Be positive Elaine... this appointment is a great opportunity.

Iris xxxxx

frogmorton

Hi Elaine

You get ready girl - write it all down - take someone with you (Dad??)

Ask everything you need to know and tell them how it is then they can hopefully, give you all your options and have something to help you.

Elaine - when do you go? You know me - memory like a seive, I woiuld like to cross my fingers for you on the day

Love

Toni xx

elainebadknee

HI DD

Well I dont know which area of my knee are dead areas i just know its completely worn down.....I havent been told how much damage is in which areas, thats the problem they dont give me information and i havent seen an x-ray of mine to tell you......So i cant answer your points as havent heard of this before........
Youre right no arthritis is fun whatever it is...

Elainexx

dreamdaisy wrote:

All you can do is tell him the truth about how you feel. All he can do is tell you the truth about the options. A replaced knee isn't presumably going to stop the problem with the cartilage and if you do not have enough dead areas of bone I don't think you will be offered a replacement, but then again I am not a consultant. It's no fun having a rare condition, just as it's no fun having a common one. I wish you well. DD

dorcas

DD's great with dates

once we know the date, you'll remind us won't you DD?...

there's dandelion leaves in it for you.

Iris x

elainebadknee

Hi Grampyal

Well my history is have had oesteochondritis dissescans since age of 18....Have had 3 loose pieces of bone taken out in early days (18-25) and arthoscopies since, most recent was March 2010...My knee was not bad till last year after my dads TKR ironically, now I cant walk a lot, have trouble sitting down, sitting on loo, cannot kneel, cannot stand for more than 15 mins etc......
I have heard that they do not recommend kneecap removal after a TKR as its not as successful but i cant find enough positive kneecapless people to make me say I want the surgery, or a more forthcoming consultant for that matter....
I appreciate they are experts but i think budgets has a role to play also in this equation.....

Elainex

speedalong

Hi Elaine,

Try and go open-minded which is how you want the ortho to be with you.

Be prepared to tell the consultant what you have already tried, what you struggle with and how your knee affects your life ... ability to work/daily living tasks/sports you can no longer do etc Pain levels, pain treatments tried etc

Most consultants want to make their own mind up and since they all have their own ideas opinions - I'm sure he will be only to keen to express his own.

I wouldn't mention knee cap removal unless he mentions it first and then if he does you can express your reservations on this course of action.

Are your x rays up to date? If not then make sure he gets some up-to-date ones taken.

Are you taking anyone else with you, not always possible, but sometimes it helps to have someone backing up what you are saying and listening/asking questions.

Speedy

elainebadknee

HI Toni

Yes taking dad witn me to be ears and maybe hear something else i may not...

Im there on 13th, hope thats not a bad omen!..

Elainex

elainebadknee

HI Speedy

Well I will try my best...I mean im just a bit worn out with it all at moment...I tried my hardest to make that other consultant answer my questions at last appointment and he was like a stubborn mule, he didnt give one millimetre of information...
My x-rays were last taken last year about October time....Im sure too the kneecap offer will be documented in my notes, I suppose it depends how much of it he reads...
I really would welcome any suggestions he has, surgical or non surgical, I just would like some constructive or supportive comments not negativity.....

Elainex

barbara12

Oh Elaine wish I could help you, I know that everything seems to hang on this appointment for you.
Just try and get your fears across, and all the other questions.
If all else fails do you do tears, I have not had to try that one yet, but I know a few on here have.
Good Luck once again, we will all be in your packet, so take to many tissues or there wont be room,
Love
Barbara xx

elnafinn

Hi Elaine

Just to wish you all the best with this appointment and I hope the outcome is what you hope or you can work as a team and go with what he suggests. Why should he have the same opinion as the other consultant? He will read the notes but he will also see what you have to say and look at the offending knee for himself. I would write some things down - makes it much clearer. Even give him the notes if clearly written out with bullet points or pros and cons etc.

Most important, be yourself, try not to get uppety if it is not immediately going the way you want the conversation to proceed - consultants will not like that as will anyone.

You have waited a long time for this appointment, or so it seems, so I truly wish you well with it.

Luv
Elna x

elnafinn

elainebadknee wrote:

HI Speedy

My x-rays were last taken last year about October time....Im sure too the kneecap offer will be documented in my notes, I suppose it depends how much of it he reads...
I really would welcome any suggestions he has, surgical or non surgical, I just would like some constructive or supportive comments not negativity.....Elainex

Hi Elaine,

He may well wish to take further x-rays if they were taken last October. He may not be keen on doing the knee cap op. Consultants all have their own procedures and their own way of doing these ops.

Good luck,

Luv
Elna x

elainebadknee

Hi Barbara

Well this appointment means i can either start to make my life better or im stuck like this indefinitely.....
I would like to go in and ask him to be honest with me, speak to me in lamens terms not jargon but who knows how he will be...?
I dont want to do the tears but today ive been in them twice already cos im so fed up and todays my birthday (i didnt want to tell people till it was nearly over cos i dont see a reason to celebrate)....
Thanks for all you little uns in me pocket...

Elainex

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elainebadknee

Hi Elna

Well i tried taking questions to my last appointment and to ask him to answer me but that tactic didnt matter on iota...
I will try to be myself but if he acts all tin god like i will be a bit disappointed too....
Id love to be able to get a loan together for £6,000 and just have the op, no quibbles....But i live in the real world with little savings and no income to support that...
This sure has been a long time coming this app...

Elainex

elainebadknee

Toni

Sol my beany frog is coming too with me on 13th, he has to he has been there every step of the way so far..
He also wants me to take him see Toy Story 3 but told him im no good at steps in cinema...

Elainex

dorcas

Elaine...
I'm so sorry you've been so upset today. You've been having a rough time of it for sure... and I really hope that things will change for the better for you soon. maybe this appointment will be the start? fingers crossed.

I hope you won't be offended with just a little acknowledgement from me of your birthday.



meant sincerely...


iris xxx

frogmorton

Hi Elaine

of course he is coming - he emailed already!!!

13th will be an ok date and Elaine if you cry then so be it - it can't be helped if you feel that bad - they may well need to know

If it is you birthday (and I tend to trust Iris) maybe it's a secret, BUT please please do have a good day. Some modern cinemas have all mods cons and beany has to see toy story - it will make you cry :? In a theraputic kind of way

Love

Toni xx

elainebadknee

Hi Toni

He's getting to be a cheeky beggar...Anyway if he can prove he can sit still long enough may take him to cinema.....What snacks shall i take for him...

Elainex

elainebadknee

Thanks Iris

But seriously it wasnt any different from any other sunday...Even got bought a fruit birthday cake and i hate fruit cake!!!
Really not worth mentioning....

Elainex

dreamdaisy

At least someone thought to buy you a cake. Grown ups don't usually get cake, well, this grown up doesn't! DD

nanasue

Hi Elaine
Sorry I don't have anything to add, as I don't really know anything about knees. But just to wish you well for your appointment, hope it turns out to be what you want it to be. If you still don't have any satisfaction please try PALS as they may be able to help.

Thinking of you
Love Sue x

elainebadknee

Hi Sue

What exactly are PALS, i have heard of them but dont know specifically what they do? Is there a website......?

Thanks for advice and good luck

Elainex

nanasue wrote:

Hi Elaine
Sorry I don't have anything to add, as I don't really know anything about knees. But just to wish you well for your appointment, hope it turns out to be what you want it to be. If you still don't have any satisfaction please try PALS as they may be able to help.

Thinking of you
Love Sue x

elainebadknee

Well yes but when its family and they know what you dislike/like its a bit wasted....Bit like an otherhalf or sibling buying you something you specifically dislike...

Elainex

dreamdaisy wrote:

At least someone thought to buy you a cake. Grown ups don't usually get cake, well, this grown up doesn't! DD

angel1

I really hope you get all that you want from the forthcoming appointment Elaine. It`s not difficult to pick up on how much it has impacted on your life, in so many different ways. At such a young age, you need to be assured of the best future possible.

There is one other possibility if you do not get the satisfaction you want at Wrightington. That is Interhealth, and it was with this Organisation that I had my TKR surgery just over two years ago, and it was five star treatment, but on the NHS.

There are only three Centres of Excellence in the country, and it would mean travelling, but you are obviously prepared to do that anyway. The one that I was in actually isn`t that far from Wrightington, where you are going anyway. As far as I`m aware. they don`t appear to have a catchment area, although I am not absolutely certain. I used the Choose and Book scheme. Had an appointment within a week, and a date for surgery four weeks later. The Centre had only just opened when I went there, so things may be slightly different now, but have a look at the website anyway, and see what you think. I cannot praise my whole experience highly enough.........Ange.