PMRGCAuk
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Fool me once…

Fool me once…

Those that can't do... RANT!

rantingsofamadwomanblog.com...

Warning; This blog post contains strong language. If you are offended by expletives, please think twice before clicking on the link!

Cheers.

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Wow Melissa! That is a lot to take in. Research to be done, other opinions to hear.

My brother in law ( a little older than us and a keen skier) had it done and has no complaints.

The pain you are in sounds hideous. There is something appealing about having a brand new part installed. All in time for when you are skippity hoppity again.

Try not to think of this as an accumulation of horrors. You are still doing well with your GCA/PMR management. Nobody has got it in for you babes.

That doc you paid for sounds pretty credible.

All the same, I’m sorry. Less of the old lady nonsense. You will be forever young. 💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐💐🌸

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Thanks Jane! Yes, yesterday was a bit of a shocker and it took me by surprise. Today I am more at peace with it... I guess. It is not a decision that has to be made today, but I was looking forward to a more active summer... but that may not be the case, now.

You are right, lots of research and other opinions to hear!

xxxx

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Oh dear. Hoppity hoppity but no skippity skippity. All I will say is you will know when you have to accept the inevitable. It's usually when you feel like you would like them to amputate to stop the pain. Hope that's a long time coming. Don't look too hard round your body. I have it in my neck and spine. I stopped having xrays thereafter. I keep muscles as strong as possible and will leave decisions to future me and consultants.🌻🌻🌻

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Thanks Poopadoop! No, no skippity skippity for me, at least not for awhile.

I didn't have to look for this, it's been poking at me for months now... I have a high tolerance for pain and assumed it was a minor thing, that I'd get sorted out before summer. But the trouble now is, I am barely able to walk on it. I won't be doing much of anything this summer... which is a bummer. Anyway, thanks!

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I miss skipping. I am afraid I skipped along a lot even as a full grown adult as it makes me laugh. I presume you ice it. It obviously won't heal but helps pain. I have a gel doughnut that straps to my knee and a brace. Unfortunately I think the doughnut strap would hurt your cyst area. See if you can get some capsaicin cream on prescription or there are homemade recipes on the web. I can irritate but does help referred pain. KT strapping might help the pain too. YouTube has videos of how to strap the knee for different conditions.

I had to fall down stairs about a dozen times before I was forced to do the one step shuffle. My backside has thanked me as it was always bruised.

As others have said rehab it the most important bit. But you seem like a determined person to me!!💪

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Hi, Yes, I do ice frequently... and you are 100% correct! I invested £25 in one of those blue neoprene knee brace thingies and it does hurt the back of my knee where the cyst is!!!! Thank you... you are a wealth of information! I do the one step at a time thing too.. although I feel ridiculous! I am determined!!!

#iwantmyfreakinlifeback

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Ps. For some reason the baker's cyst treatment scares me more than surgery. When hopefully I would be unconscious and have good sleep.😜

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....the draining of it and the Cortisone shots? They don't do much else for them.

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Yes drawing freaks me and I have a lifelong phobia of injections. I have been flooded with needles if all kinds in the past few years so a bit better now. But I am always worried that I will punch them square on the nose if they hit a nerve.

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Ahhhhh, I see. I used to hate needles, but have had so many I am quite used to them now...

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Oh Melissa "kick me when I'm down, why dontcha!" 😓 So sorry to hear about this. Time now to go weigh up the pros and cons but does sound like the operation will bring you relief from that bone crunching pain. Big hugs 🌺

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Thanks Hollyseden. Yes a lot to consider.

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I am so sorry, is there no end to your problems must feel like it to you. A big hug and 💐 maybe also a 🍷all good wishes. 🌸

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Thanks CT-5012. I appreciate the wine and good wishes!!!! This is a test.. it is only a test..

: )

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Join the club! I can’t get it done quick enough!

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Seriously... you need it done too? Are you gong with NHS or private? You're not on Pred anymore though are you?

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Certainly do need it - NHS hence the wait!

No Pred!

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Ahhhhhh. Well good luck... I have a lot of research to do.

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A knee buddy! You see, the universe provides! 🙂

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The Universe hates me!!!!!

Hahahahahahahahahahaha.

Kidding... the Universe does provide! And it has been more than generous to me.

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In the meantime, invest in some Nordic walking poles. They are amazing! Thank you PMRPro! You look like a serious walker with them. Our beautiful Peaks bristle with them these days.

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Hmmmmm?

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You certainly go through it, don't you. What a bummer.

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This is a test. It is only a test of the Emergency Broadcast System...

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😂😂😂

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At least you know how the baker's cyst came about. Everyone I know who has had surgery to replace a knee has had great benefit. One women could barely walk as it was both knees. She is fitter and completely mobile now with no pain. But everyone needs to make the decision themselves. And of course there is the caveat that all surgery carries some risk. As the Dr said. There's no rush. You will have to join the one step down at a time on the stairs club.

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Yup. I am hearing lots of success stories which is inspiring!

I'm already a member of the "One Step Down at a Time Club!" : ( It was just I was hoping to be more active this summer and get some of this weight off.

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Oh Melissa, what a bummer! Something's definitely trying to get you off your feet and rest. So sorry you're in even more pain.

Maybe you'll feel better once you've done the research and made a decision. Although, making a decision with Pred head is difficult.

Wishing you well 💐

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Thanks Footfairy-1, It tis a bummer indeed! Seriously, I thought I was learning the lesson I was supposed to be leaning!!!!!

Yes... I have a lot of research ahead of me! Thanks again.

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Sorry to hear about your knee. More rest time required?

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Thanks Cyclegirl54, Yes more rest required, apparently. I didn't think I could REST anymore!!!

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Hi

I am so sorry your not having much luck are you

Would you get it done on the NHS or would they say your too young

My Mum had had both of her done

First one age 80 and was back digging her Garden in 4 weeks

Second one the same at 85 but it did not go so well as could not get her foot realigned so well .

But she says its still the best thing she could have done

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I'm told age is not the criterion - need is. And you recover better if it is done before you can't walk at all - the muscles are in better shape.

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I believe you are correct. And yes, I agree the younger the better..

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Hi Rose54, thank you. I think the NHS would do it, but here in Brighton the wait time are CRAZY! WE have insurance, I just need to look at the financials... how much I'd pay versus how much they's pay. I am so happy it worked out for your Mom!!!! One at 80 and one at 85!!!! HOLY MOLY!!!! Good on her!

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I’ve had both knees replaced albeit before PMR/GCA struck, and I’ve never looked back. The pain was completely limiting me. 2 years on and I have new knees that feel wonderful, strong and pain free. Get them done, what benefit in waiting. Top tip - follow the physio’s advice to the letter and your recovery will be swift - good luck x

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WoW! Cool. Yes the pain is now impacting my quality of life... I am walking less and less and sitting more and more.

I'm so happy to hear your story!!! Thank you!!!!

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It never rains but it pours! So sorry for you, not that helps. If the following helps and I do hope so.... My husband had a knee replacement in April. Six weeks on he’s so pleased he went ahead with the operation. He doesn’t have the problems of GCA/PMR, he does have a heart valve replacement, brain haemorrhage, heart attack, stroke in his medical history. He is 71, polio, at the age of 7. The leg that was affected by the polio is the knee that has caused the problems. He was told last year that the only solution was a knee replacement. At that time he said no he would cope. In January it became much worse, no option. He went back to the doctor, who is wonderful, she immediately referred him to the hospital. We were astonished to be sent an appointment to see the consultant at the Spire private hospital. It seems the NHS are happy to pay the private sector to cut the waiting lists. We cannot fault the treatment or the waiting time. He had been seeing a physio privately for several months prior to the doctor appointments. She had told him the important factor before a knee replacement was strengthening the muscles in the thighs. He was given a series of exercises, plus using an exercise bike. This has definitely paid off. So if you go ahead try to exercise, I know horrible thought! The more support and strength the new knee has the quicker the recovery. We were also warned both by the consultant and friends who had undertaken the operation that it was painful, more painful than a new hip. Yes, this is true. The important factor is that despite the discomfort you must do the proscribed exercise plan. Basically if you don’t do the exercise you might as well not bother to go through the operation. The new joint must be kept mobile or it seizes up. He was told on Tuesday that the mobility in his knee joint is excellent, he is allowed to drive, the insurance company are happy, yes, the knee aches but he’s getting there. Everyone is different and it is a personal decision. It seems if you prepare and are willing to exercise despite the discomfort it’s a new lease of life. Bless you, this isn’t fair. The last six weeks haven’t been easy for either of us and a lot of the care I have given has been through gritted teeth, I’m not known for my sympathy and with PMR it has been even more difficult but I have kept saying this will pass. We have a strong hope that our walking holidays are not over and that’s thanks to the new knee.

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WOW! Inspiring!!!! Your husband sounds like Superman!!!!! Good tips about the exercise before and after, a few people have mentioned that. And I have heard of the NHS putting people at our local Spire, so that is good news too! I will check with GP to get better understanding of wait times and list of possible consultants. I liked this guy, and would like him to do it.. I'm sure he is an NHS surgeon too. Thank you so much!

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We’re at the other end of the county to you, so it was the Spire at Hastings. Can’t fault the hospital, staff and aftercare. It is definitely worth the pain of the operation and the exercises to get rid of the original pain and walk in comfort. I’m not telling husband he’s Superman; never hear the last! As a family we have told him that if he has anything else wrong with him it’s attention seeking and we’re not taking any notice! He has certainly had fantastic treatment from our NHS. It makes me so cross to hear the staff being criticised, they work so hard, in very difficult situations and often limited resources. Good luck.

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Hi, I'm in Brighton, you're not that far away, a couple hours! We have the Spire, Montifiore here in Hove. That is where I saw the specialist yesterday... I love the NHS, hate the wait times and some of the policies (i.e. my GP could not order an MRI of my knee), but know they are driven by lack of ££££ and poor government decisions. Tell your Hubby you are going to trade him in for a new model if he keeps this up!!! ; ) He sounds like one tough guy!!! Good on em. I have just sent a message to my GP asking for a "Referral"l to an Surgeon within NHS... I'll see what wait times are, and if they agree with diagnosis.

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You’re in a different health trust, or whatever they are called now a days. It does seem to be a postcode lottery as to whether types of treatment are available in the area you live. Our GP referred him straight away via the Spire, no questions. Time between referral and operation less than three months. My husband also has hearing aids, national health supplied. They are high quality digital hearing aids. He tells me he’s really pleased with the quality, although I have a theory he’s had my voice programmed out! A friend in Kingston upon Thames, with a severe hearing loss is unable to be supplied by the NHS with the same product. It was a real fight for him to be even referred for a hearing test. So I hope you have the choice in Hove. Don’t get me wrong I have nothing against the NHS without them I wouldn’t have my husband. It’s a room of your own, privacy, it’s what you need when you’re not feeling your best and I have to say the food I witnessed himself eating looked really good. Three course lunches he doesn’t get at home!

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Wow! That is GREAT! If I do, do this, I may end up going private, depending on how much the insurance company will pay and what my out of pocket would be. I worked at the Royal Sussex County Hospital (loved my job) but it is a dump. I'm always surprised when people come out of there "without" an infection!!!! Don't move, it sounds like you have a great trust!

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We have,despite what you read in the newspapers. We also have a wonderful doctor. She listens to what you have to say, will discuss options. She has a sense of humour, in my opinion an essential in all walks of life. When she joined the practice I was amused to read in her profile that she has an interest in geriatrics. Very useful at our age!

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Ouch!

However, I know lots of folks who've had a knee or two replaced, and all who did the physical therapy had outstanding results.

My mom had hers done in March 2003, and was walking in the the surf of the Atlantic Ocean by 4th of July that summer.

As far as the pain was concerned, she had her operation at 6AM and did her first post-op physio the afternoon after the operation without taking the pain meds (the nurse was late). Mom said that of course it hurt, but it hurt like it was getting better, not like it hurt before.

Mom was one tough broad. So are you. Don't rush to choose your surgeon, facility and physical therapist. Take your time. Don't wait too long, though. Like having your wisdom teeth out, you'll wonder why you waited so long.

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Ouch indeed.

WOW! Your Mom rocks!

...and you hit the nail on the head, "don't rush..." "don't wait too long..." It's all about balance.

Thank you !

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Here is my nugget of wisdom...the sooner you get the new knee , the better you will be.

When I was fussing about...whining that I didnt want to have knee surgery,... i had the benefit of a chatting with a wise old woman...

she said...

“you know you need the knee replaced...you can get it done sooner...while you are still in pretty good shape...

or get it done later...while your fittness continues to decline.”

End result, once surgery is done, rehab is rigorous...if you are in poor physical condition because you waited so long...you may find yourself being checked into a nursing home (rehab facility) because you need to build up your fittness level to participate in the rehab😱

So... quit stalling and schedule the procedure...it is not so bad, and the end result is that you have knees like a 20 year old🤣 (Just kidding...there is the scar...🤪 but all and all... its a good thing!

Tough Love and Kind Regards, Jerri

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😱 Okay you scared the crap out of me!!!!! A freakin nursing home/rehab facility, NO WAY!!!!

The consultant drew me a timeline/graph, quality of life and time... and yes the longer I wait the less quality of life I may have and the older I am becoming, so it's more difficult to get back to that (pre knee replacement) quality of life because I'm older... or something like that! I was still in shock! Thank you! I think! : )

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Don't think you need to worry about a rehab facility in the UK - they don't have them!!!! In Germany it is standard practice - about 2 or 3 weeks post-op you are sent for residential rehab.

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A "real" rehab I wouldn't mind... A nursing home rehab, no way! : o

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You might think about "medical tourism".

aarp.org/health/conditions-...

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WOW! Thanks!!!!! A holiday to Costa Rica and knee surgery!

COOL!!!!! Thanks!!!!

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My dad had a new knee at 84 and carried on playing tennis for quite a few years afterwards. At 91 his tennis days are over but he is still mobile and rides a bicycle! So sorry you are having such a rotten time x

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Thank Pongo13, Your Dad sounds amazing!!!!!! He is more active than me!!! WOW!

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Dear Melissa - I won't try to 'jolly' you up this is very frustrating I know and 'insult to injury' BUT - yes you know me - if I were you I'd go for it when the time is right and look to a positive future with that knee. Obviously a key factor is the pre and post exercise demands which clearly make a BIG difference to the outcome. The level of your Pred dose might (I'm no expert here) be a factor to consider though when scheduling the op - but I'm sure you'll sort that all out with your docs.

I know a few people who have had joint 'parts' replaced and everyone who did the exercises seemed to do very well - one woman now in in her late 60s who unfortunately has osteoarthritis has had both knees, both hips and a shoulder 'so far' and feels like a 'new woman'.

Thinking of you ...

Rimmy

XX

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Hi Rimmy, Thank you. Yes, lots to consider... it's the "when the time is right," question that will haunt me. I was hoping to be more active this summer, as I have been feeling better PMR/GCA wise... I was sure this was a glitch in the matrix and the worse case would be a keyhole surgery. I never expected this. And yes, level of Pred is a huge factor... we talked about that too. A lot to consider here. Thank you for sharing your opinion.

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So sorry to hear this and you've had plenty of advice, but once you've settled your mind GO FOR IT - you can do it girl! x

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Thank Telian! A lot to consider.... My mind keeps coming back to, "...being able to walk is a really good thing!" ; 0

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..being able to walk is essential!...especially when you have a choice - some don't!

You're in shock and you have to take the AI into consideration too but you will survive, I survived cancer surgery and all the ups and downs the steroids caused but if you can't change it then..... Look at all the examples of some very elderly people getting through this surgery.

Your prognosis is good isn't it concerning mobility after surgery?...you know you'll make the right decision when you're ready...x

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Thank you ! All good, valid and relevant points... Yes, I am in shock and that surprised me. I actually sat there with my mouth wide open, in disbelief for like a minute or so! I just kept saying, "...you're kidding." "...you're kidding." He wasn't kidding.

What cancer surgery did you have, if you don't mind me asking? And CONGRATULATIONS! Did you have PMR/GCA at the time?

Boy life is sure "funny," and not in a HA HA kind of way. I do find it absolutely gobsmacking what we human's are able to deal with. We are freakin AMAZING!

Be well and thanks again.

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That's one of my favourite sayings 'you're kidding!' keep saying I must stop saying it to professionals but you can't - it's usually in response to yet another big blow!

Breast cancer with a second surgery as it had spread into the lymphs, and yes it was 5 months following diagnosis of GCA/PMR.

I'll message you privately if that's okay?

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I'm sorry to hear about your knee and how the pain is limiting your enjoyment of this summer weather. We have a friend who has had both knees and an ankle replaced and at 75, he's in the gym every week. He did all the pre-op exercises and the post-op sessions and is more active than I am - he doesn't have PMR, though! x

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Thanks Rugger, The stories I am hearing are AMAZING!!!! Very positive. That is one thing that is scaring me; the pre-op exercises are really important.. what if the PMR/GCA flares and I can do them???? *sigh* Need to look at all angles... Thank you!

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Come on Mamici1. No more 'what if's. You already know what you are going to do. Have it now. There's still time for summer. Lady at our church, almost 80, has had both knees done in a year. Had to lose some weight beforehand, but is good, pain-free and walking well. The deciding factor is always 'anything to get rid of the damn pain'!!

GO GIRL!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Hahahahahaha! I'm all over the place!!!! Up, down, left, right..

I vacillate between "BAD ASS" and "Wuss."

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Sorry to hear of your latest predicament. Before making any decisions re knee replacements, I would look into what the Margaret Hills Clinic (website) has to offer, and also read up about arthritis on Sarah Myhill's website. After all - knee replacement is only a local "sticking plaster" - whatever is causing it, the problem is not removed by the surgery and the arthritis is will spread to other parts of the body. It might also be worth looking at the serrapeptase enzyme and Krill. At the very least these other protocols will improve the situation ready for surgery and at best will negate the need altogether, but it will take time.....though probably no longer than you would have to wait for surgery on the NHS anyway. Good luck and take care.

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Many thanks. I will check it out!

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Hi Melissa

Yes these things come as quite a shock and I know just how it feels. I've had problems with my knees for longer than I care to remember (I probably have the most bowed legs you have ever seen "would never stop a pig in a passage" as m mother used to say right from my teenage years and they look pretty bad even on my graduation photograph from over 50 years ago). Playing serious sport didn't help nor did continuing to run until 5 years ago. For the last 30 years I have had pain in both knees but have lived with it with the help of orthotics in my shoes (these days I wear so called barefoot shoes with paper thin soles and no heel with the orthotics - which these days come from an offshoot of Salford University - in them) which succeed in keeping the pain manageable. I slowly switched from running to cycling as the knee pain became more of a problem when I ran and then 5 years ago came off my bike avoiding a dog running into the road and took a lot of skin off one leg. It became infected and very swollen with the knee the worst bit and a young trainee thought I had done something to my knee and that was causing the swelling rather than an infection and so sent me for an X ray. Didn't show I had damaged it but did show arthritis in the joints. Off to the consultant and confirmation that I had bone on bone arthritis in the inner joints of both knees. At the Nuffield Orthopedic in Oxford they have a quality of life questionnaire to determine how urgent your replacement need is and I have to say I fiddled it a bit to make sure my score was below the immediate" threshold. So running banned and I was on the list for a 3 year follow up unless it got worse as both knees needed half replacements. Continued to live with it until what I now know was the start of PMR three years ago when it got worse so that when I finally went to the doctor (I am male and you well know how we put off going!!) who as part of the investigation sent me back to the Nuffield. After the first time I had a better idea about how to show that I could still manage and so kept under the "urgent" level but had a long conversation with the consultant about how long I should continue to fake the results on the basis that there would become a time when having the operation done would not improve my quality of life that much (HRQL - health related quality of life - is become a familiar term after my Nice panel experience and is an important measure for the NHS) and so I should be wary of how long I put it off.

Three months later came the dreaded PMRGCA confirmation which as far as my knees were concerned was a bonus - the anti-inflammatory effect of the corticosteroids eased the pain significantly and I could walk further and going down stairs was much easier. As I have tapered the pain level and stair problems have increased but are still manageable and the orthotics do a lot to help. I do resistance based exercises to strengthen all the muscles round my knee to support it and I'm sure they help as does my large daily does of Alaskan Fish Oil. At some stage in the not too distant future I will need to become bionic but at them moment getting down to minimal doses of the prednisolone is more of a priority.

So my advice is live with it for only as long as it is manageable, make sure you don't twist it and keep exercising the muscles round it. The experience of the many of my ex rugby playing mates that have had the replacements is that it makes things much better and that these days with an epidural type anesthetic that keeps you awake during the procedure yo are back on your feet in no time.

The gods don't really have it in for you and at some point you will look back on all this testing with a smile

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Wow! Thank you! Very informative and enlightening!!! ... I am confused though? Why would you fake results to NOT have the surgery? Since you knew there would be a time when, "having the operation would not improve my quality of life, " but you had no idea when that was... aren't you gambling? Any why live in pain? Why suffer needlessly??? Especially if, ".. rugby mates say it makes things much better and with epidural you're back on your feet in no time?"

See I'm thinking... I am only 64 now, and I'm in good health besides the PMR/GCA. But, I'm in pain, my quality of life is already impacted (in that I can't walk without being in pain) my hubby and I are less active which is taking it's toll on both of us, if I wait 2, 3, 4 years I'll be 66, 67, 68. What if I have other health issues at that time, that prevent me from having the surgery? If I had it sooner rather than later and kept the PMR/GCA under control... I could have the next 2, 3, 4, 5 years living a fairly normal, pain free, active lifestyle... unless course I get hit by that bus!!!!

As I said I have a LOT to consider...

Thank you for your response!!!!

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Hi Melissa

I think with hindsight I might well have come to different conclusions if I had known that GCA was on the horizon. I think my problem is that I am fiercely independent (and I mean fiercely, something I inherited from my mother. She threw my father out whilst she was pregnant with me because she thought he was having an affair. Even though she found out just after I was born he wasn't, she never took him back and I never met him until I was 27 despite her marrying his cousin when I was 5) So I always think I can manage until something stops me. Guess it is something that at my age I am not going to change.

Whilst you have a great number of things to consider and I don't envy your decision making process, my advice to you would be not to follow my example but go ahead and get it done as soon as possible and as someone else said earlier stick to the post op exercise routine and you will be surprised how quickly you are back on your feet.

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Ahhhh, I get that. I was just intrigued with your decision, because you had stated so many reasons to have the surgery!!!! I will give it considerable thought and as an "analyst" by nature, I'm sure I'll go into an "analysis paralysis" induced coma and have to be revived by my dutiful husband.

I don't envy my decision either... I had hoped my biggest decision for the summer, would be what flavour of ice cream I'd get when I was walking leisurely along Brighton Pier!

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OMG Melissa - don't joke about the bus...that's what happened to my husband!!..and don't feel bad either about saying it either...

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OMG! I'm so sorry!!!!! I do feel bad, as I joke about that all the time... never realised how insensitive it really is... : (

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I said it doesn't matter, I used to say it......people do, it's human nature :)

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You tell it well Retailmonkey - light hearted with amusement for a serious situation - man after my own heart.. hope you don't mind my comment!

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Thank you for saying I struck the right note - I wish I had Mark Benjamins humour!!

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Sorry to hear about the knee Malissa. There already has been some great feedback on the forum. From my own Hip Replacement experience I would choose to get it done quickly. Knees are more tricky than hips. The more damage done, plus loss of muscle due to decline of use, the more difficult recovery. Very important to build up leg strength before the op. No one would doubt your determination afterwards to get on your feet & finish the job. I did see some who could not put the shift in & it cost them! Believe me to be pain free is fantastic. Hope that helps. ATB

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It helps.. thank you!!!!

My goal is to be as pain free as possible so I can be more active and get some semblance of my old life back.

My new personal hashtag, motto, mantra...

#iwantmyfreakinlifeback

PS - This new BS has just made me even MORE determined!!!! Screw the Universe, she has no idea who she's dealing with! ; )

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Aaah Melissa what a shame. Just when you were feeling more like your old self. Take heed of the “ aunties” and weigh up the pros and cons. Personally I think if you are limping now, it’s only going to get worse so you may as well have some pain from the op. My brother in law had it done last year and he is striding along with the best of them now. His consultant told him that it was bone on bone. Makes your teeth go on edge just thinking about that. 😘😘

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Thank you! Ohhhhh I'm limping for sure... I can't help but limp! And I do have high tolerance for pain, always have. And the consultant said the Preds is masking the pain, so as I reduce it may be more painful. Ohhhh goody!

I swear his attitude seemed to change considerably towards me, after the x-ray came back. Like he seemed much more sympathetic to me! Hahahahahahaha! He probably thought I was laying it on a little thick when he met me!

Yeah the bone on bone thing is a little off-putting!!!!!!! : O

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You are awesome! I plan to share this with family and more! You captured what I (we) need people to get!

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Me? Ummmmm, thank you. Yes please share, if you think this one or any of the other Blog Posts might help them understand your situation. That is one of my biggest frustrations that he people closest to me, don't have a clue! My daughter said yesterday, "A knee replacement, really? " I said "How do you know?" And she said, "I skimmed your blog."

Hahahaha, "...well thank you darling daughter!"

SHARE on Sister! (Are you a sister?")

... and THANK YOU!!!!!

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Hi Mamici1. You certainly have received some great advice and your orthopaedic surgeon presented everything really well.

You just need to wrap your head around all the details to get in the right frame of mind to make your decision. One positive to take away is the fact that at least the medical world has something to offer you. 20-30 years ago they couldn’t have given you the option. It’s an elective procedure do you have done time to process.

In the meantime consider the Nordic poles. They decrease the compressive load on your knee and they increase your aerobic activity by 30% if your GCA/PMR can handle it. You can try a single cane as well carried in the opposite hand to the sore knee to also decrease the load on the inside of your joint. Stairs is 4-5x your body weight compressive load going through your knees so singles going up and down will help. Remember the good leg goes up first going up and down lead with the bad leg. Cycling on flats is good as the load is taken through your hips and pelvis but the gca /pmr may not allow that. Some soft braces have an opening or hole in the back and that would take some pressure off the Baker’s cyst.

Don’t know if any of this helps but as you do your homework regarding the surgery you want to try and self manage and stay as mobile and active as possible. People have already stated the importance of having good muscle bulk around the knee as well as having as much range of motion going into the surgery.

Good luck with everything. Take one day at a time.

Hugs

Karen

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Wow! GREAT advice, really useful, thank you!

Will check out Nordic poles and may look at joining a cheap gym just to have access to stationary bike. I'll take it nice and easy though!!!! Don't want PMR/GCA rearing it's ugly head!

I am really concerned I have not done ANYTHING ) including walking!) in 6 months! So regardless of knee replacement decision I want to try to strengthen legs... then if I do decide to go ahead, I'll be physically ready! Waking more is out of question, but slow/steady bike is good idea!

Many thanks! Melissa

PS Tips on cane and stair usage very helpful... I would have put cane on side of bad knee! : )

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Might want to consider day pass at gym first to see if it works before you invest too much money. I know for me my pmr couldn’t handle the gym and I got frustrated. I viewed it as a failure- my own issue. I have my own stationary bike that I got second hand and can tolerate a GENTLE cycle😉

I use Nordic poles when walking my dog at our Nature Park. Every little bit helps

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FUNNY! I was just looking at GYMS in Brighton Hove!!!! ...but a used stationary bike is a GREAT IDEA!

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My son has a stand for when he wants to use his bike as a 'stationery' - think it was expensive though but cheaper than the gym - I find cycling on a stationery boring depends where you have it situated though - ours was in the garage, moved it outside for the summer - I used to use it until I got my 'problem' you know what I mean...

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Yes, I'm not a fan of cycling in one place, but can't ride on the streets of BRIGHTON! And it will be cheaper than a gym for sure! And if it will build up my muscles, I may give it a try... lots of them second hand on Gumtree!

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Know what you mean streets are same here in Southend although we don't have to go far to the countryside it's too far! Go for it - wish I could sit on a bike!

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Hi, me again😁

you are so right to focus on muscle strength in your legs. The more toned you can get, the better your recovery will be.

I had a total knee replace done at age 65. The best part was waking up from surgery, without pain in the joint. Sure, there was the surgical pain, but that improved daily...unlike the bone -on -bone agony pre-surgery.

My greatest pre surgical handicap was my fear of pain... which I found well controlled post-surgery. Much better than before.

i, and my lovely icebag, became most intimate partners post surg...❣️ I love my ice pac.

You will do well, 🌻 Kind regards, Jerri

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I'm okay with the pain, my biggest fear is the "anaesthesia." I'm not so much afraid of dying, under anaesthesia, as that would be a great way to go out... but it would suck for family and friends... "Yes, she went on for knee replacement surgery and she died... " Super Bummer!!!! : (

I will do well... with whatever my decision ends up being!

Thank you!

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It is common to use an epidural or spinal anaesthetic together with sedation (if the patient or surgeon prefers) for hip and knee replacements. I had one to have the metalwork put into my knee 26 years ago and was fully conscious with the Italian anaesthetists gathering to practise their English. I was in Scotland when it was removed and requested a spinal anaesthetic, much to their surprise, but they gave me 2 temazepam so I slept all the way through. I was not amused. But you do recover much much faster.

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Good to know about the epidural or spinal anaesthetic.. I would definitely go for that!!!! I had bunion surgery 4 years ago and suffered from bradycardia.. I was told later that they were concerned and had a hard time getting my heart rate back up.

: o

So if I don't have to go under, I'd prefer not to.

PS Hysterical that the Italian anaesthetists gathered to practice their English!!!

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It was a hoot - and the time shot past! Never got a chance to listen to my chosen CD!

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Too funny!!!

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Reminds me of while I was having my TAB, everyone was chatting away - when the surgeon knew I'd retired from the NHS it was like I was in an interview and he offered me a job! - the 50 minutes flew by...

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Being allergic to anaesthetic I once chose Brachial block for my arm surgery, no-one warned me to be careful once the block began wearing off that I wouldn't have control of the limb at that stage, needless to say I tried to move and the arm shot out of control and smacked me full in the face, not funny it was sooo heavy it brought tears to my eyes.. at least I wasn't sick from the gas....

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OMG! How awful...

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OH was warned - especially by the nurse who fetched him back to the ward! Didn't help. He still let go and itf ell off the bed and nearly took him with it!

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shouldn't laugh but it is funny..

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That's the movies for you. They always show that horrid dr house gait. The idea if the stick takes part of the weight and keeps you balanced. So if you go with a stick (for now) get measured up or your shoulder will suffer.

Of course the problem for me now is what I laughingly call my good leg is the one that the arthritis and bursitis has decided to set in. I may have to go back to 2 crutches which at least balances it out.

If you have room in your house for a gym ball try one in the house. It'll build you you core and you can mobilise your knees to a comfy position where there's no grind but can build quads up too. Bouncing is always fun. 😇

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Good tips! Thank you !!!

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Wow - another hurdle to cross ! But at least you're in a much better place to deal with this Melissa than you were a few months back. You've been given such excellent advice from folk who have gone through it and it seems doesn't it - the earlier to have it done the better. I'm sure you'll do all your research on this- at least you have plenty of time to do this! And do the necessary physical preparation for the operation. I would imagine this will keep you focused for sometime in a good way. The best thing is from what folk say on here it sounds like a very successful operation to take you further into fitness and good health. All good stuff. Onwards and upwards!

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Thank you Jackoh! Yes, yet another hurdle! And "YES," I am in a much better place than I was even 4 weeks ago! So I need to be thankful for that... Also, thank goodness for the people on this forum with their knowledge, experience and willingness to share!

Onwards and upwards! Thank you.

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Bless you . But just try and remember where you were 2 week's ago. Having a great and happy time. This is so unfortunate but not life threatening. You are strong and will get through this. Just think it will give you time to consider writing your blog more and getting it published. You can do that😊😊😊😊. Any help you need with how you feel. I am here as well as the rest of this site. I am only 2 hours or so away at the moment. You can always come here for a long weekend and I will be at your beck and call. Payback will be coming get though. Ha ha..😕😂xx

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Thank you, thank you!!! Yes, it was shock and I was bummed out yesterday, but I'm much more settled today... it is what it is, right.

I have a lot to think about and as many decisions to make! Thank you for the kind offer to visit, but I'm not very mobile at the moment... Hope you are well!

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