Update on op

[2013mayo]

Hi everyone,

Finally had my op on leg, had it done Friday, quite a major surgery done with the muscles and ligaments. Surgeon said it would take a long time before it feels ok, no weight bearing n leg for 14 weeks, phew, that going to be hard going. I’m not recovering very well as I think the GCA has kicked in again, they have upped my pred to help out. Don’t think the nurses understand how debilitating GCA is, they seemed to think I can get up with no problem, it’s quite difficult only using one leg to shuffle or hop about.

Just feeling sorry for myself, all being well I’m back home tomorrow.

I’ll let you all know when I’m home and hopefully feeling better, just feeling a bit sad 🤕

Xx

Ps, keep feeling dizzy, don’t know why?

[DorsetLady PMRGCAuk volunteer]

Wow, 14 weeks is a long time…..and I’m sure nurse don’t fully understand GCA….their expertise is rehab after ops…and yes it is difficult hobbling about on one leg at the best of times.

Dizziness could be after effects of operation/anaesthesia- have you mentioned…how’s blood pressure? …and are you keeping hydrated? I’m sure they are nagging at you about that!

I’m sure when you’re home, and in your own environment you will feel better, despite the leg…🌸

[2013mayo in reply to DorsetLady]

HiThank you, yes I’m sure I will be better at home. Trying my best to improve but it’s just hard work.

Thanks for your support, it means a lot to me 😍

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

You’re welcome - as you probably know have recovered from 3 replacement operations over last 3 years - so do appreciate the hobbling about!!! Albeit after GCA . Once you get home, although it may be difficult, you can do things at your own pace.

[PMRpro Ambassador]

Maybe speak to the anaesthetist before leaving for home - it could be the dose of pred isn't enough to cover the adrenal -related demand for such a major insult to your poor body.

Get well soon! I had 3 months of non-weight bearing on one leg but in those days I was young and fit!!! Had a special cast so that leg wasn't on the floor that allowed me to stand though.

[2013mayo in reply to PMRpro]

Hi, Thank you for your help and support , I’m convinced the GCA pred needs to be higher level, I’ve just seen the surgeon and he tells me the metal pins holding the fracture from 2017 had gone gunky, and wouldn’t have held any longer 😬🤔

Xx

[PMRpro Ambassador in reply to 2013mayo]

Oh lovely!!! Justifies the agony I suppose.

What dose have they put you up to?

[2013mayo in reply to PMRpro]

Only to 10mg was on 5mg?Do you think it’s enough?

Xx

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

Would hope so, sort of following rules for a flare…but maybe not, you have to see ….

[PMRpro Ambassador in reply to 2013mayo]

If it is "just" a flare it is the usual suggestion- but if it is adrenal considerations too maybe not. And it depends: the plus 5mg bit is more for a flare brought on by overshooting the dose you need - maybe the stress of the build-up and process of the op has actually triggered an increase in disease activity as well. But I don't know who is best for you to talk to about it - the GP might not "get" either side of the coin, the rheumy and the surgeon may only see one side...

[2013mayo in reply to PMRpro]

True.Just wish I felt better.

Xx

[PMRpro Ambassador in reply to 2013mayo]

You will - but it is early days, that was some insult to the body!!

[Ana-16]

Wishing you a speedy recovery. Be extra kind to yourself 💐

[2013mayo in reply to Ana-16]

Thank you😍

[Hidden]

I’ve been limping since last October following serious rupture of my gastrocnemius and soleus muscles. Due to Covid I did not go to ER or walk in centre and could not speak to let alone see my GP. A scan revealed a large tear still unhealed in April and I’m awaiting a telephone call from a physio. I can’t walk far, bend, squat and need help with household chores, driving hurts too. I can’t wear my usual shoes or indeed any apart from sketchers. My leg hurts all the time and I’m fed up so although I can’t offer advice I offer every sympathy and hope the 14 weeks go quickly for you x

[2013mayo in reply to Hidden]

Oh poor you,Thank you

😍

[HeronNS in reply to Hidden]

It's really rough having ongoing pain from something you really can't do anything about. Can anything be done to speed up access to a physiotherapist so you can start to find a way forward?

[Hidden in reply to HeronNS]

Thank you for your reply, I have visited a sports physio for 4 sessions each at £40 but that only provided very temporary relief. Here in UK that’s about it I’m afraid and if I need an op or further treatment as a result of the delay, costing the NHS more money than necessary then that’s they way they work here. Goodness knows how long the list for an op would be but hey ho compared to some people posting here I’m not in too bad a place. Had a great trip through the rockies and on to Vancouver Island a few years ago, a beautiful country.

[2013mayo in reply to HeronNS]

Hi, Well I’ve seen physio today but because I can’t put any strain on hip I suppose it’s limited to what they can do for now.

Can’t wait to get home 😀

Xx

Sorry I realised that was for you.

[Longtimer in reply to 2013mayo]

Hope being at home makes things easier, but my SIL had lots done recently, but had physios in regularly which helped a lot...hope you get some good support...

[2013mayo in reply to Longtimer]

Thank you, just relieved the surgeon found out re the infection, could of gone to my bone 😍🤕X

[Longtimer in reply to 2013mayo]

Oh dear what a relief, small mercies!....keep us posted....

[2013mayo in reply to Longtimer]

Yes lucky in some respect☘️Just hope I get better soon, maybe I’ll feel more like I used to 🤔 😀Xx

[HeronNS]

You will feel more relaxed at home and that should help the healing. When you feel like eating make sure you get enough protein. I do not envy you the 14 weeks not weightbearing but I suppose once you're feeling better you can take up a new (or old) hobby, or teach yourself a new language or something to pass the time . And we are always here to unburden to! 👂🌻🤗

[2013mayo in reply to HeronNS]

Thank you😍

[MrsNails]

Hi Mayo - Glad to hear you’re out the other side 🙏🏼

What dose of Pred were you on? Have you got the Sick Day Rules Leaflet with you?

Depending what dose you were on Pre Surgery will impact now on what dose you should be on, ideally your Rheumatologist should recommend the Dose now, how long you should be on it & if you need to taper or go back to your previous dose.

When l had my Surgery, l was given 2x100mg - one in Theatre & one Overnight as l was very sick. The Registrar rang my Rheumatologist the next morning for advice & then spoke to me directly to advise me of the Regime.

I’ll attach Sick Day Rules for you.

Get Well Soon 💐

MrsN

healthunlocked.com/pmrgcauk...

[2013mayo in reply to MrsNails]

Hi,I was given dexametheson ( can’t spell the word) very high dose during surgery, just told to up the pred to 10mg for 5 days.

Xx

[MrsNails in reply to 2013mayo]

My Pred was put up for two weeks & l imagine you were in Theatre for a long time.

[2013mayo in reply to MrsNails]

Hi I was told I had major surgery so not sure how long in theatre. Surgeon’s team came round next day and told me about amazing surgery I had done, the surgeon is one of the best, so I’m hopeful it’s the last time on this leg (7th), lucky 7 😍

[Telian in reply to MrsNails]

Same happened to me with my breast surgery - the intravenous extra. Still brought on a flare but was early days of GCA too. 🌺

[MrsNails in reply to Telian]

It’s a big assault on the body & extra Pred is essential in my view.

[2013mayo in reply to MrsNails]

Hi,I will contact rheumatologist when I get home as it was only emergency doc over the w/k, I’ll see what dose is needed.

Thank you for all your kind help, it’s so comforting to know I have support from all of you.

😍

[MrsNails in reply to 2013mayo]

I think you might need more for longer. It’s been a huge Surgery & quite an assault on your body - you may feel not so bad while in hospital not doing too much but once you get home you may be more aware of the impact of the Surgery. Did l send you the Leaflet about ‘Patients on Steroids Undergoing Surgery’?

[2013mayo in reply to MrsNails]

Hi,No I don’t think I’ve got that info, if you could send it on that would be great, thank you.

Xx

[MrsNails in reply to 2013mayo]

It’s in FAQ - here’s the link for you

patient.info/doctor/precaut...

[Viv54]

Best wishes for a speedy recovery,your entitled to feel sorry for yourself ! 🌸🌷🌸

[2013mayo in reply to Viv54]

😍🤕

[Uglow]

TLC lots of it. It’s a big deal you will get there but like with everything we deal with it’s time time time which is so frustrating. Sending strength xx

[2013mayo in reply to Uglow]

Oh thank you so much,That’s exactly what I need, tlc.

😍

[GrannyJane]

Hi Mayo,

Wishing you a speedy recovery but hurry slowly, be worth it in the end. There’s no place like home for convalescence, so hope you are soon there. Is there anyone to cosset and cherish you? Hope so as it helps process.

Take care .🙏😘👍

[2013mayo in reply to GrannyJane]

Thank youHubby is not very well but my beautiful doggy will be there to give me lots of kisses .

[Rugger]

All good wishes for your recovery and so pleased to hear you had a marvellous surgeon. It helps us so much when we have faith in our doctors' abilities. 🌻 🐕

[2013mayo in reply to Rugger]

Hi, Thank you, yes it makes you feel good to know surgeon is good.

😍

[S4ndy]

Hope you make a good recovery. I hope the hospital are arranging ongoing physio for you and most importantly an occupational therapist assessment to ensure you have everything you need at home to cope with being on one leg for so long. Things to help around the home and when going out make such a difference. Physio wise the important thing is to keep everything mobile and try to maintain what you have. There's lots of exercises and equipment that can help with this too.

Hope you feel better soon and heal well xxx

[2013mayo in reply to S4ndy]

Hi,Yes just spoke with physio, they are going to arrange ongoing support .

Will be so pleased to be home 😀😍

[Swdai]

Wishing you all the best for a full recovery . Real test - not weight bearing for 14 weeks . I recently had problems after a fall which put me in hospital for six days - pulled the hamstrings off the bone !!! after falling over the dog .

My husband bought me a self-propelling lightweight wheelchair for £199 from Argos - it was absolutely brilliant - I was in it for a month. It meant I could get around without having to depend on others .

Just as I recovered and was onto crutches my special needs/ non-verbal granddaughter broke her ankle - she thought it was absolutely brilliant to speed round the house in the wheelchair ( we live as an extended family in a large bungalow with two long corridors ) : she also took my shower seat & toilet frame !!!!

Going back to the purchase - the wheelchair is not overly expensive and it enabled me to go on a booked hotel holiday in Cornwall - we travelled by train and the assistance I had was next to none.

Take care - take it easy .

[2013mayo in reply to Swdai]

Hi, I do have a very old one, had to use it years ago, never got rid of it so it will come in handy not having to keep asking everyone.

Xx fir help, however a new one £200 is quite a good option, I’ll look into that, thank you.

They have given me a frame as not too good with crutches just yet, need to build my arms up 💪

Oh dear, bet the dog was in the “dog house”

Xx

[readingbooks]

You will not be forgotten during this trying time ! Keep us informed.

[2013mayo in reply to readingbooks]

Oh thank you😍

[butterflyfarm]

Thinking of you at this most difficult time. 🌺

[2013mayo in reply to butterflyfarm]

Oh thank you so much, I’m home with bed downstairs, still very tired but at least I can sleep when I want. Very painful but can manage on painkillers.😍

[butterflyfarm]

The worst thing about hospital is the lack of sleep due to all the bleeping machines and comings and goings of the nursing staff. After 8 nights last November I was glad to get back to my own bed and cups of tea when I wanted them. I slept for nearly 24 hours the following day! Home is definitely the best place for recovery. 🏡