Girdlestone procedure

pebbles63

:???: Hello! This is my first time on the forum and a desperate attempt to get some help! I'm 48 and have had RA for 23 years. I've had three revision hip procedures and after a further hip failure, I have just been told that the bone stock is now so poor it is inoperable. The only option is to now undergo a girdlestone procedure which is to remove the whole hip joint and leave me without a hip. The hospital told me very little about the procedure and my subsequent searches on the internet and speaking to the AC helpline have answered questions about the procedure but I would love to hear from anyone who has had this done and find out they manage with day to day living?? I suppose I am still in shock and trying to get my head around it, but any info would be very welcome!! Thanks, Tracy.

skezier

hi Tracy,

sorry i can't help you with that but wanted to say welcome to posting and i hope someone will be along who can. nice to meet you though and hope you can get a lot of info as well about this from the hospital and your consultant before they go ahead with it. Cris x

tillytop

Hello Tracy and welcome!

I am so sorry that you have had bad news about your hip - but hopefully there is someone here who will have experience of this procedure. We have peeps on here with many and varied joint replacements perhaps there is someone else who has had it done.

Thinking of you.

Tillyxxx

pebbles63

Thanks Cris and Tilly for your kind words and support, I shall be patient and see if anyone else knows about the procedure and it's effects.
Tracy.

valval

sorry am in early stages of arther and have never heard of it val

frogmorton

Hi Tracy

a very big welcome to the forums from me too.

I too have no experience of this procedure, but may well look it up on the web.

Everyone on here will make you feel very at home and support you in any way we can.

Love

Toni xx

skezier

hi Tracy,

just thinking about it they do use it in animals as well.... i know its not the same but i had a feral cat once who had her femur head removed and that formed a false joint so she was less lame and though her gait was altered she did ok .... people medicine should be at least as good if mot better and if you do go for it it may well help you so much to be rid of pain and have a chance of walking without discomfort.

i hope someone comes along who does know and the cat i only just remembered the name (in fact had to check some invoices ) the vets gave the removal. hang in there Cris x

dreamdaisy

Hello pebbles, it's nice to meet you but I am sorry you have had to find us - and with such a problem. I've heard of it but I did not realise, until I read your post, what it entailed. :shock: Crikey. :shock: I have not the slightest idea about how your life will be affected but ye gods girl, this is one helluva thing to get your head around. We will be here to listen and support, I am sure of that, so please come and talk to us. I am not known on here for freely dispensing hugs but here come one or two so brace yourself: (((()))) DD

stickywicket

Hi there, Pebbles63. I'm afraid I'm another who can't help. The nearest I've come to this is being in hospital with a lady who was about to have it done, I think. I know they'd to remove her THR & I was amazed anyone could cope without one but everyone seemed to regard it as no big deal. It would be to me! Unfortunately (Well, fortunately for me) I got let out before she had her op. Good luck.

elnafinn

Hi Tracy

Welcome to the forum, I am so sorry that we do not appear to be able to help you with this girdlestone procedure. I cannot believe that the hospital did not provide you with sufficient information and I am relieved to hear that you called the helplines and they were able to help you with your questions about the procedure. You are such a brave soul. Of course you are in shock and trying to get your head around it all.My goodness, I would be too. I did google it because it interested me. I found a couple of forums, one in America and the other mainly Australians but one English nurse replied on that one. There were very few people on the forum talking specifically about Girdlestone procedure so perhaps it is not performed that often. Are you in pain now as I kind of got the gist, pain usually ceased after the operation. I also understood that one is left with a straight leg that is unable to bend at the hip. Is that what you have found out too?

Gentle hugs
Elna x

elnafinn

Hi again, Tracy,

I have just found this forum which may help you a little:

http://www.wellsphere.com/aging-senior-health-article/girdlestone-operation-post-operative-and-how-to-get-around-at-home/570559

Night, night,
Elna x

elnafinn

Hi yet again, Tracy

I notice the above forum mentions the elderly in the title, but there is a 48 years old lady taking part on the forum and others who do not mention their age as well as a 73 year old lady.

Elna x

pebbles63

Thanks to all of you for replying, and Elna for the link. It seems that people have very different outcomes and problems from this procedure, I have to weigh up whether the pain and immobility is bad enough to warrant taking that chance and having it done. I've had difficulties since the last THR in May and you'll all know the feeling that you get used to having the pain around! A friend took me for some spiritual healing today, and whilst it has helped me mentally to relax for a time, the dread and fear is gradually creeping back. I really appreciate all your support, it's very humbling to know that people I don't know can offer such care and compassion, I'm beginning to understand Cris' 'people medicine'.

Tracy x

dreamdaisy

I often wonder if every now and again we put up with too much as we are so used to pain and discomfort. I've been thinking about your predicament, pebbles, and I admire your spirit. My experience is that on the whole medicos do have more than a vague idea of what they are up to, and if they reckon life without a hip joint is possible - and if it means greatly reduced or maybe even no pain - then it has to be worth consideration, but then I admit I cheerfully typed that whilst being in nothing like your predicament. This is a tough one, no? We may lack in practical advice but we can listen and empathise. DD

elnafinn

Dear Tracy

As you say, people have different outcomes and problems from this procedure but that applies to other operations too. Symptoms, age and reaction to ops vary so much. There does seem to be a heck of a lot to take on board and think about before proceeding with this one though, I must admit and I really do feel for you. I do hope that you do not perhaps feel quite so alone with all this now that you have found this forum and also have been able to read up a little on how others have coped and fared post op. There were a couple of email addresses on that site I found that you could pursue, should you wish and have a chat with one, lady in particular.

It is good to hear that a friend took you for some spiritual healing and that it helped for a while but oh, how I sympathise with the torment you must be going through, Tracy with your health issues. I only wish I could help you more.

Please do keep in touch with us here if that would help a little. There is always someone who will reply with support even if we do not have answers. It is good to talk and can lessen the load a little.

Gentle hugs

Elna x

skezier

hi tracy,

i am glad you got a bit of spiritual healing... i used that a fair old bit and it does really help even if its only to make it easier fro you to cope. mind i saw one who actually stopped the crohn's mid flare basically just like that! it can really help.

your bound to feel worried, concerned etc. the Girdlestone thing must feel kinda drastic and i know the vets were saying its sort of last resort but for the little cat (after that always called limpy-leg) there wasn't a lot of choice and the femur did sort of form a fused type joint so people medicine honestly should be better so hang in there.

this was years ago Tracy an things have got better flower so it might be a good thing for you. i so wish i could help but Elna's sites might really help you to know whats best for you and just make sure you get the hospital to actually run through all the options and pro's and cons.... something they really should have done for you already.

hang in there and keep in touch here please. Cris x

dreamdaisy

Hello pebbles, how goes it all today? I hope you are somehow easier in your mind about all this, I really do. DD

pebbles63

Hello again,
I've spent the afternoon with another lovely friend who's a brilliant listener.We sat in the park with coffee's and laughed then cried. She's been great but my head hurts from having thought about it so much. I have taken your advise, Elna, and emailed the lady from the wellsphere website, I'm not sure how old those postings are but it would help to hear from someone who's gone through it, although her circumstances are may be more complicated as she had an infection into the mix as well.

It sounds like your spiritual healing really did the trick on your crohns, skezier. I'm really pleased to hear that you benefitted so much. I probably needed to clear my mind a bit more to be more receptive to the 'channels of healing' maybe I should treat myself to another dose of it soon?

I will let you know if I hear back from my email.

Thank you all again.

Tracy x

dreamdaisy

Hello pebbles, no wonder your brain is reeling and spinning - actually, reading back to my last post well, what was I thinking? :oops:

I am glad that today you have had not just tears but laughter too, that is sometimes one of the better medicines. (Strewth! I sound like an ad for the Readers' Digest!) I still cannot fully grasp what you are up against but I hope you can somehow 'clear' your mind from it all, if only for a few hours. Sometimes things can be over-thinked, however understandable that is. DD

pebbles63

Hello again,
I had a reply from a lovely lady called Roma who had this procedure in 1994. Her hip has not become fixed and she manages quite well. she even manages working in a kitchen for 3 afternoons!! The downside is that her leg is quite short and she has to wear a 4" raised shoe, which sounds hard work and she said about the obvious things of pacing herself which I've practised for years!! One thing she said which did make me sit up and listen was the fact that she didn't go ahead with the procedure for quite some time and this resulted in the hip socket pushing up into the pelvis causing a fracture and almost damaging her spine. So I reckon not having the op is not an option.

I have decided to call the consultant's secretary and ask for an earlier appointment or get the consultant to call me so I can get my questions answered.

This situation has completely exhausted me and overtaken my thoughts for too long that I can't cry anymore. like you said, dream daisy you can over-think. But least I feel ready to be a bit more proactive and think a bit more positively. At the end of the day I will still be who I am now, a mum, partner, daughter, sister, and friend. but it's taken me this long to remember those important things plus writing about it on here and seeing it all down in black and white kind of helps you sort things in your head?? I have lots of practical issues to still sort and am due to have some adaptations to my front door so I can get out on my own and the bathroom (I currently have someone here every morning to help me) hopefully that will all return to normal and I can, once again,do things for myself. Tracy x

elnafinn

Dear Tracy

I am so relieved to hear that you have been in contact with someone who is "in the know" about the girdlestone procedure and to hear their experiences. I don't know why but your thread really struck a cord with me and I did not want to reply without perhaps having looked up some kind of information that could, hopefully, help you and me also to learn about this procedure. I had read quite a few people on forums mentioned about the leg discrepancy after this op but did not want to worry you further or thought that perhaps you were aware this could indeed happen.

I think that you have come to a wise decision to call your consultant's secretary to ask either for an earlier rather than later appointment or a telephone consultation with him. You still do not have to commit but you may well feel a little more in command now since obtaining more information and knowledge on the procedure. You will have an idea what you wish to ask and find out. Knowledge is power and I am so relieved that you have been able to talk and learn more about it.

I do hope that you will stay in touch, I have this thread ticked to notify me when a reply is posted as I so wanted to know how you are and what you decide to do. I think you are incredibly brave and am so sorry that you have this to contend with at your age.

Sending you over gentle hugs
Elna x

barbara12

Hi Tracy
Sorry Im another that cant help, but I just want to add my support and welcome you to the forum, sorry you have had to find us, gosh you have gone through it, I really do hope you can get some answers , and as Elna says, they should have explained everything to you.
I do wish you well with it all.

skezier

hi Tracy,

please let us know. its unfortunate it wouldn't cure your hip but it can ease the pain. the healing of you as a person rather than the problem is worth a lot i think.

been thinking about your dilemma.... i think you will know when you have to have it. the leg shortening don;t they use built up shoes? flower i do wish i could help you but leaving you a cyber ((( ))) and am, like Elna, glad you have been able to talk to folk in the know now. hang in there. Cris x

CJHunter

Just sending u one of these (((()))) pebbles.xx

Airwave!

Hiya! Your story sounds like being stuck between a rock and a hard place! I do without a big toe joint (just got a 'space'). Life carries on, gently does it.

The surgeon was telling me about patients without hip joints and I took succor(this word looks wrong and the dictionary doesn't help) from it, not that I had much choice. I had heard of a powder made up of minerals that the surgeon can use to promote healing of the bone, any chance of that?

Only one person can make the decision and pain may make make it easier!

GraceB

Pebbles,
I can't help on a practical level I'm afraid but just wanted to suggest that you took a list of questions with you to your next appt. Some on this forum record their consultations on i-phones so they can listen to them afterwards and I believe it's helped.
I wish you good luck in your decision making process. Ask as many questions as you feel you need to and make sure you have the right support in place before you have this surgery.
Take care of yourself, and try to remember to find the positives wherever and whenever you can.
Grace