I was just wondering if anyone out there is among the thousands of patients nationwide requiring revision hip surgery following the failure of the Dupuy ASR hip implant.
I have just turned 50 and recovering from BC. I successfully underwent a mastectomy and immediate reconstruction (LD flap) for DCIS with microinvasion in early May this year.
I was scheduled to have the rest of my ‘cosmentic surgery’ about now but because of problems with my newish hip (which I’ve had since 2006) I have to undergo revision surgey next month. I have very high levels of cobalt and chromium in my bloodstream as a result of metal on metal implant debris. If left, the hip implant could cause quite a lot of damage to several organs hence the urgency.
I am very fed up about this as I was progressing well since BC treatment and was looking forward to the ‘finishing off’ surgery to my new breast. I am also quite nervous about going into hospital for what will be my fifth surgical procedure since April (I have had a sentinel node biopsy, surgery to stem a bleed and surgery to replace my fixed breast implant with a tissue expander as skin wasn’t healing properly as well as the mx ) I am confident my rigth arm will be strong enough to use crutches, haul myself out of bed etc as I took up swimming again after my mastectomy, which has helped a lot. Just worried about dignity issues as I will going into a general orthopeadic ward and will feel vulnerable enough about lack of mobility without the added complication of a breast which is still missing a nipple! I am very happy with my BC care to date and delighted that I’ve not required further therapies (no node involvement and I am ER negtaive) so lots to be thankful for. I am feeling a bit down about it all though as I was all ready to put health crisis behind me and move on. Would love to hear from anyone else who has found themsleves in this unusual and unfortunate situation (as far as anyone’s aware metal ion levels and BC aren’t related although metal poisoniong can cause benign tumours round hip joint if implant left in place) I have a lovely partner and great friends and family so am sure it will all be ok but do feel terribly lonely sometimes as I think we all do when dealing with such serious health problems. I am self employed too so am having to rely on goodwill of my clients while I take another eight weeks off work. Roll on 2012. Thanks for reading this.I feel better for writing it all down. Lou
I can hear you are feeling vulnerable re. odd nipples but I would say to look at the bigger picture - if you are going to be a long term survivor of BC (YAY!!) then don’t let the orthopaedic problems waste that by poisoning you instead; get the wretched hip thing out asap! Perhaps they could ask for you to get a single room if the embarrassment is going to be a big issue, most orthopaedic units have little 4-6 bed bays anyhow to reduce infection risks and these would not be mixed sex. And they don’t need to see your nipple(s) in order to operate on your hip!
Wishing you loads of luck x
PS just a thought, but they do sell stick-on nipple-covers (bra substitute, all the decency with none of the support: try M&S with the clear straps and bra-extenders) maybe this would help you feel less obviously exposed (and raise a few smiles - they will want to be kind about the psychological aspects of care but it’s not a situation they will be very familiar with in orthopaedic setting so it might help them a little!)
Also there was a large cohort of hip replacements from 3M failed about 1998 or so (can’t remember the exact date) there was a huge recall for revision surgery for patients like you who had thought they were out of the woods, and I wonder if the company (either 3M then or DePuy now) may have set up some support group - it’s in their interests as happy people are less likely to go off and sue them! That would not be specific with BC/reconstruction issues but may help with the frustrations of being recalled; and statistically there will be some other BC sufferers there? although you can expect most to be a good deal older than you.
Thanks so much hymil for your kind words of support - and the great tip about the stick on nipple! I will look into that.
I think one of main reasons I felt so anxious is that four days after my LD flap surgery our wonderful dedicated breast care ward was closed for the weekend and we were all moved to a mixed othopaedic ward! Our beds were in full view of male patients - quite upsetting as we still had our drains in. It was horrible. Several of the orthopeadic nurses hadn’t got a clue how to look after us and some seemed to resent having to ‘babysit’ us until we were repatriated on the Monday. Fortunately I am going to a different hopsital for my hip surgery and my othopaedic consultant has now promised I will be in a single sex four-bay bed, so that should be ok. I’m quite sociable so being with other patients isn’t a problem.
I feel so much better for sharing this - and yes - you’re right - it needs to be done pronto so I can get on with being a long term breast cancer survivor. Oh it is uplifting to write that down. Thanks so much. Your reply - and sound advice -means a lot. Lou x
is a pleasure! Weekend closures are very disprutive for everyone.
Marginally better than being sent home when you’re not ready though.
They will probably also be relatively clueless about lymphoedema, so be prepared to hide your at risk arm when they come to take your blood pressure! Excessive forbidden weightlifting includes hoisting yourself around the bed with an overhead monkey pole too, however tempting to want to get your independence back. On the plus side they will almost certainly have electric hoists.
Well anyway, you’re never to young to learn to use a zimmer, it might come in handy knowledge one day!! Praying it all goes well, let us know.
re. Costs of being off work: this from their website at: asrrecall.depuy.com/ukasrrecall >> patients >> what to do
Quote:
But apparently also there are american lawyers chasing around (surprise, surprise) and advising patients not to talk to this helpline in case they get themselves blamed for having in some way contributed to the failure… well, but they would say that… it’s all sounding more and more like the 3M Capital hip recall of 1998 bmj.com/content/316/7132/645.12.full
I couldn’t find anything about a specific support group though.
Just wanted to offer my support and encouragment for your hip revision. I had hip resurfacing in 2008, so have some idea about the surgery and the long recovery afterwards, which I think will be a more prolonged after a revision. I certainly would not want to be faced with a revison after just 5 years, especially after treatment for BC too, so I take my hat off to you, as you seem to be taking this in your stride. Excuse the pun.
I don’t think you should have any trouble in hospital in terms of keeping your dignity re: BC. Especially if you are in a single sex ward. It is probably worth speaking to your BCN to address any specific issues.
Am now looking into the help available for those of us with ASR impants and am touched that you’ve done some research on my behalf, Hymil.
Feeling a bit happier about the surgery since finding out I’m first on the list and will be in a small single sex bay. Pre-op assessment was quite a laugh yesterday. The young occupational therapist was obviously unused to encountering hip patients who are not yet of retirement age. She was very sweet but couldn’t quite get her head around the fact that I don’t live on ready meals and can cook real food for myself so won’t be needing social services’ assistance. I also had to reassure her that my bloke is only 51 and fairly highly evo;ved so he won’t find it a problem dressing and washing me! Still, at least she was caring. Re lymphodema, the doc I saw when signing revision op consent form questionned my risk levels. Turns out he worked on breast care team elsewhere and thinks my risk is minimal because I only had four nodes removed during sentinel node biopsy. I explained that right axilla area is still sore nine months on - and more important - my excellent Oncologist and BCN have stressed that I will always need to flag up potential for lymphodema with other health pros. Cherryorchard, I will talk to BCN re specific issues, including this one. My right arm is quite strong thanks to lots of swimming but as you know, it can be tricky using hoist etc. OH gets frustrated with me sometimes as I come across to medics as stoical when actually I’m really rather apprehensive. I am telling myself it will all be fine though. It’s a case of getting on with it and the timing does get me out of Christmas shopping. Silver linings and all that. I’ll let you know how | get on. All the very best to you both. Lou x
Christmas shopping tip: catalogues, online-stuff and vouchers, You’re excused from the shops this year! Particularly if you’re lucky enough to have a highly evolved kitchen-trained OH!
Know what you mean about the age thing; when I was in for my frequent appointments last year they kept looking round for the elderly relative I had apparently forgotten to bring… the WRVS canteen ladies eventually asked if I was relative, new staff or what? LOL. Um No, I’m here for tweetment…
Great that your surgeon has relevant experience for your special case, who could have expected that bonus? You do need to keep your team aware of LE risk though, you could be laid on your side (good hip down) for several hours, does that sound comfortable for your axilla and at-risk arm? I’m not sure if you said hip and BC are same side or opposite, and actually I’m not sure which would be worse.
BCN could advise.
It’s all on the right. Strangely enough my left arm is aching today but thk it’s because it’s overworked and rebelling.
Treated myself to fleecy pull on trousers (sexy) and thermal vests from M&S to wear post-op.
Before my MX I bought three pairs of pretty but practical pjs but they’re no use for this hopsital stay so have had to buy sensible nighties. My silky numbers are off limits for a while. Never mind. I can be rebuilt.
Main orthopeadic man made me smile as he apologised about inevitably of new, longer scar on my right thigh. It was kind of him but given that top half of me had undergone such drastic change I think I can live with a tramline down my leg.
x
The scars are not your tramlines. Think of them as your ‘go faster’ stripes. Your comments on age reminded me that my surgeon had said the youngest person he had fitted with a BHR was a 32 year old female. People hear hip surgery and think you must be at least 70. Fortunately, the physios were used to my surgeon having younger patients and were more concerned that I didn’t try and do too much, too soon.
I could only lie on my back for 6 weeks after surgery. Do they let you lie on your good side now??
Sorry you can’t wear your nice pj’s for a while. I struggled to find any night dresses before going in for my hip op. that were not grannyish, or the complete opposite, too slutty.
My hip is a S&N BHR, so not one of the Dupuy faulty ASR’s. My surgeon had a bit of a wobbly when he read about the Dupuy hips and recalled all his hip resurfacing patients for X-ray and cobalt/chromium blood levels, depsite the fact he only uses the S&N device.
Fingers crossed for a good op and speedy recovery.
No. The lying on your back for six weeks rule still applies, sadly. I got quite used to the discomfort again this summer following my LD flap recon. I just hated the epidural when I underwent my original hip operation. I’ve not had kids and hadn’t appreciated how much lower back ache they cause!
Oh well. Only a couple of weeks to go. I’m going to Blakeney in Norfolk next week for a couple of days of R and R before the op, which should be fun.
Am so glad you had the BHR and not an ASR. I was always under the impression that I’d been given one of those until I received the recall letter, so am pleased you’ve been checked out. Your surgeon sounds extremely vigilant.
Take care and thanks again
Lou
x
Lou,
I was really lucky that my surgeon used the BSR. He was trained by the surgeon in Birmingham who developed the BSR in how to do the procedure so he used the product he is most familiar with. But like you I didn’t know what prosthesis had been used until the recall.
I am lucky twice over with having him as my surgeon as his research interests are hip revision, as well as hip resurfacing. If/when I need revision surgery in the future, he will hopefully be able to carry that out.
Have a nice time in Blakeney. Wishing you some sunshine.
I didn’t like the idea of using a raised toilet seat that had been used by somebody else so bought my own. I still have it in the loft. We put the bed up on breeze blocks and used chair raisers loaned to us for my favorite chair. The hospital let me keep my crutches. They didn’t want them back as I had been using them in the shower. I bought a ‘grabber’ off them for about £10. I still use the grabber for getting things that have rolled under the furniture.
I wish I’d kept everything from the first time around but didn’t really expect to be needing it for at least 10 years!
My house now resembles a day care centre for the elderly. I’ve been lent a perching stool for the bathroom - a new addition to the mobility aids range - but I refused a bath board as they look too tricky to use. Did you bother with one, CO?
Tried to clean the kitchen floor earlier but can’t bend down properly without hip making a strange clicking sound so gave up! I’ve still got my grabber and my long shoe horn somewhere. They’re invaluable, post op - and beyond.
I will report back re seal pup sightings.
Sorry I missed the bit about the bath board. The answer is no, I didn’t use one. Seriously I could barely raise my leg to get up the stairs for the first couple of weeks let alone be able to swing my leg over the side of the bath and so I could perch on a little board. I have a walk in shower which I used. They didn’t give me a perching stool so I took one of my crutches in to keep steady while I showered.
Good luck with your op. Let me know how you got on.
D Day is rapidly approaching… I am first on the list and have to be on the ward for 7.15am. At least I won’t be kept waiting. It’s elective emergency surgery I suppose - if that’s a category.
Think I’m ok with it. Haven’t much choice really
Rang my BCN earlier today for some reassurance and she advised me to ask nursing staff for help with hoist etc if moving around on bed puts too much strain on my new frontage.
Had a superb time in Blakeney - and managed to see some seal pups! Lots of them, in fact. All white and fluffy and cute. Did my heart good. will report back next week when I am a new woman.
Thanks for your supportive posts. They are much appreciated x
I’m recovering well thanks very much although it’s been a long old slog. It will be nine weeks tommorw since my hip revision op and I’m still hobbling around on one stick!
At least I’m allowed to drive short journeys now and am due to start physio soon.
Found out yesterday that my wonderful breast surgeon is going to proceed with corrective surgery to my reconstructed breast some time in early summer. I’m undergoing a reduction on the good side, liposuction to my tummy to fill out my cleavage and a new nipple. I know it’s yet more surgery but I am really excited at the prospect or being symmetrical again. She assures me that the recovery period won’t be long either- about as week. I’d love to hear from anyone who has had liposuction as part of their corrective surgery. After nearly three months of inactivity and too many chocolate biscuits my BS won’t find it too difficult to source the necessary fatty tissue to pad me out!
xx
What a super excuse to indulge, I’m sorry i have to finish those biscuits, my surgeon needs me to grow more fat… :))
Great to hear you’re doing so well.
This is greatly nice discussion. I had get more ideas about your experiences. Thank you and cheer up guy. Hope all of you will recover soon.
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is a pleasure! Weekend closures are very disprutive for everyone.