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TKR at 41 for unique problems?

sondrals

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hi there,

I guess I'm just looking for some advice and expressing my frustrations. I have had knee problems as long as I can remember. My left knee "goes out" on me, now I find out what I have been experiencing are subluxations. Anyway, earlier this summer, 3 months ago, I was walking in my backyard and stepped wrong and something in my knee popped, I didn't fall or anything, just something popped and I had some really bad pain so I decided to sit down. From that point forward my knee has felt unstable, like it's slipping sideways. Thinking it'd get better like it always did I puttered around for a month like that before giving in and going to an orthopedist and getting x-rays. At first there was pain but over time it's subsided and the more I sit around on my booty the less I have (except now my sciatica is acting up).

Turns out my kneecap is subluxed towards the outside of my knee, MRI shows a bunch of stuff, extreme subluxation, torn meniscus, foreign body, osteoarthritis, non-existent Trochlear groove. So I'm shipped off to the surgeon to discuss total knee replacement because I guess I'm no longer a candidate for osteotomy because I now have arthritis. While not happy at possibly having a totak knee replacement at 41 the prospect of not falling again is very attractive to me. Plus for the past 2 months I use a walker because I'm afraid of falling and if I stand too long in one place my knee has a tendency to just randomly give out on me. I've missed out on 3 months of summer in Alaska, I've been unable to mow my lawn, go to concerts with my boyfriend, walk my dogs, go shopping.

However, because I rate my knee pain at a 1-2, they are not interested in doing surgery because I may end up with pain higher than what I'm currently experiencing. I've been basically sent home to I guess live life how I am. I do have another appointment tomorrow but... is this fair? To send a 41 year old home, using a walker, unable to do their normal stuff without fear of their knee giving out and collapsing? Is this something doctors routinely do? I was so flabbergasted at the last appointment I ended up in tears at the thought of having to just live like this, I've already given up so much in my life due to my knees and now it feels like it's just too much to ask.

As I get older every time I fall it seems harder on me, last time my knee went out I tried to catch myself with my right knee and it collapsed under me and I spent 6 months in rehab to be able to just walk somewhat normally again. It's pretty much chronically painful and I have more limited range of motion in it now. I was told then it needed replacement but I was too young (I was 38 at the time). The time before that I dislocated my elbow when I fell (tried to catch myself) and my hip has never been the same since, now I also have sciatica. I feel like I am being doomed to this life of fear of falling and I don't really know what to do. I downloaded the Oxford Knee score thing to show to my surgeon, but if he still says no, what do i do? This obviously has a significant impact on my quality of life.
 

Jockette

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I know there are surgeons who are willing to work with younger patients. If your doctor refuses you, keep looking. Call other offices and ask if that surgeon will work with younger patients.

I’ll tag @Jamie to help you.
 

Jamie

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Hi, @sondrals.....I used to live in Anchorage and know what it would be like to miss summer! I'm sorry to hear your knee is giving you fits.

Unfortunately I don't have any surgeons on my list in Alaska. At 41, you are just barely in what we would call the "younger" category of TKR patients. These days it is fairly common to see people in their 40's with bad knees. Chronological age isn't really the important thing anymore anyway. People used to worry about doing knee replacements on patients your age because the implant might only last 10-15 years. That's blown out the window now. Today's implants, put in by an experienced surgeon, should last 15-20 years or even more. We don't really know because the newer implants done with improved surgical techniques aren't old enough to say for sure.

But the real point is quality of life. Who in their right mind thinks a person should just hang around basically disabled waiting for some "magic date" when you're old enough to get a replacement. You miss the best years of your life doing that! But I'm sure I don't have to tell you this. You want to get your life back and you deserve to.

My suggestion is to contact each surgery clinic in Anchorage to see if any surgeon will consider a TKR for someone your age who has had falls as a result of the knee giving out for over 3 years. If you cannot find anyone, would you consider going to Seattle or some other location stateside?

To get a starting list of possible surgeons, use our Joint Surgeon Locator (link at the top of the page), type in your zip code and you'll get listings for Anchorage. There may be some doctors not in our locator, so a good Google search might be a good idea too.
 
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sondrals

sondrals

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Jamie, it has not been a fun summer for sure. I think the issue may be less about my age and more about my “pain level”. I will check out the locator search as well.

I am not opposed to going out of state but would prefer to stay here as my entire support system is here. I also work full time and can only take so much time off work (I can telecommute somewhat).

If things don’t go differently tomorrow I’ll be seeking second and third opinions for sure.
 

Celle

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I think the issue may be less about my age and more about my “pain level”.
Are you sure your knee isn't more painful? I'm sure it is, if you think about it.
I'd be inclined to complain more about pain.

It's not just the physical pain. It's the mental stress of always fearing a fall, and being obliged to miss out on activities that other people your age can manage.

Yes, your knee hurts a lot! I think it's just started to hurt much more than it did. LOL.
 
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sondrals

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Well honestly I was popping 2 Aleve twice a day until last Monday. They made me stop that, which in turn made my other knee hurt more and this one hurt as well. Part of the problem is my other knee is so painful it kind of masks this one. The instability is horrifically stressful, simple things such as my dog scooting past me and brushing my knee has taken me out before. And living in a state that is ice and snow for the majority of the year makes about 9 months of the year nerve wracking and downright scary.
 

Jockette

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I also work full time and can only take so much time off work (I can telecommute somewhat).
Recovery from a knee replacement takes an average of a full year for complete recovery. You’ll feel better long before that, but the first months can be tough.

Bonesmart recommends taking 12 weeks off work after your surgery to give your knee the best start to heal. While not everyone can do that you need to be prepared that you might not be ready to go back after a few weeks. What time frame were you thinking of?
 
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sondrals

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4-6 weeks. Ideally I can work from home before that, I work an office job that doesn’t require me actually be there for much of it. While I realize it can take up to a year to fully recover I’m hoping to be able to go back part time to allow for physical therapy and such. I don’t want to skimp on that at all. My boss had his replaced in April and was back part time at 3-4 weeks but quit his PT at the same time. He has pretty limited range of motion and muscle wasting. Hoping to prevent that, I’ve already been in PT for 2 months but they’ve flat out told me it won’t do much other than build muscle
 

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@sondrals
IMO you are under rating your pain, nerve wracking pain, horrifically stressful, rates about a 7-8 in my book.
Include your stress levels, your limited life, the pain it is causing your other knee, your knee giving out, 6 months in rehab because you fell on your knee, missing the summer, your dog brushing on your knee hurting, and fear of winter ice and snow. Each one of the above is worth one to two points. If you have ever cried over this, that is a "10" level of pain.
Keep searching and find a surgeon who will take you seriously, and help you get your life back.
 
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Pumpkln

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My boss had his replaced in April and was back part time at 3-4 weeks but quit his PT at the same time. He has pretty limited range of motion and muscle wasting
He went to work too soon, and never gave his knee a chance to heal.
We recommend 3 months off to heal (sedentary job may return sooner, longshoremen will need longer), with a Phased return to work .
 
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sondrals

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Oh I’ve cried over it lots. And while it isn’t like excruciating when it goes out and fall, it hurts quite bad. Right now just the physical discomfort is probably a 5, add in emotional a 7-8. It’s extremely disconcerting to feel your knee slipping outwards. Plus the impact it’s having on my other leg... yeah not good. I’m just hoping the surgeon doesn’t think I’m now playing things up.
 
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sondrals

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He went to work too soon, and never gave his knee a chance to heal.
We recommend 3 months off to heal (sedentary job may return sooner, longshoremen will need longer), with a Phased return to work .
Agreed. I feel like he rushed back and didn’t give himself enough time to heal. I’ll take the time I need. My job is very sedentary if need be, plus the potential to work from home is available as well which makes it easier to break up the workday into smaller segments.
 

Pumpkln

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You might want to start a list of the impact on your life, you can start with the list I made from your previous posts. It will give you a better idea of just how much your pain, stress, and discomfort is impacting your life. All of which add up on the 0 to 10 pain scale.
Your pain rating should include worst pain, best pain, and the pain right now. Levels vary through out the day.
 
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sondrals

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I have done that. I feel previously I’ve been dismissed because of my weight. Had they looked past that earlier there might of been something different available and I wouldn’t have lived like this for some many years and done so much damage. I’ve lost 100lbs in the last year and a half and want to really enjoy my life now I’m faced with this. Thank you all so much, you’re all so supportive.
 

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I'm so sorry you got dismissed because of a weight issue. I did too. I got to the point of almost complete disability because I was 'too fat'. Congratulations on losing the weight. I know how much effort that takes. I've lost 75 this year myself. Still lots to go, but it will all be so much easier with more mobility.

I hope you'll get some better news.
 
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sondrals

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@luvcats I'm so sorry you've gone through that too. I'm still puttering along at losing weight, I'd really like to lose another 30 or so because of my knees. I kept thinking losing weight was going to fix everything because that's basically what I've been told. Unfortunately that's not completely the case, especially since repeated subluxations and dislocations have damaged my knee so much. But I am pretty proud of myself. Congrats on your weight loss as well! It is no easy feat.
 

Celle

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4-6 weeks. Ideally I can work from home before that, I work an office job that doesn’t require me actually be there for much of it. While I realize it can take up to a year to fully recover I’m hoping to be able to go back part time to allow for physical therapy and such. I don’t want to skimp on that at all. My boss had his replaced in April and was back part time at 3-4 weeks but quit his PT at the same time. He has pretty limited range of motion and muscle wasting. Hoping to prevent that, I’ve already been in PT for 2 months but they’ve flat out told me it won’t do much other than build muscle
We usually recommend taking about 12 weeks off work and doing a Phased return to work , if possible.

That gives the knee sufficient time to make a good start on healing, before you stress it with the extra activities that work demands.

Don't run away with the idea that your boss's limited range of motion (ROM) is because he stopped PT. It's much more likely to be because he went back to work far too early. For the first month after surgery, your knee needs plenty of rest, ice and elevation, so it can start healing from the trauma of surgery. Stressing it by going back to work is likely to have caused chronic inflammation in his soft tissues.

We advise people to stop going to PT once they are back at work, because the increased activity of work acts as daily PT. Ding PT on top of work is often just too much for such a new knee.

It's not exercising that gets you your ROM - it's time. Time to recover, time for swelling and pain to settle, and time to heal. Your ROM is there right from the start, and it will gradually increase as your knee heals.

My surgeon doesn't allow any formal PT at all for the first month after a knee replacement. He says your knee needs that time, to start on its journey of healing. For that month, we rest, ice and elevate our leg, and walk around the house. The walking is our exercise and we increase it a little each week.

After that month, we just go to PT once every 2 weeks, where we are shown a few new exercises to do at home each day.

His patients all do well and achieve good ROM, as I did, and he hasn't had to do a manipulation to help with ROM for the past 4 years. I think that speaks for itself.
 
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sondrals

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@Celle - I have done a lot of reading today and I'm find out more about all that. It is financially not feasable for me to take a full 12 weeks off work but I can work from home sometimes, and do part time days as needed. I live a mile from work so it's really easy for me to go home if I need to.

Prior to my reading last night and this morning I was definitely of the mindset of no pain - no gain. I'm also being pushed by my mother as she was up and back at her job 1 week after ACL repair and assumes I will be the same as her. I am going to have to have a talk with her prior to doing this because I believe her expectations are unreasonable and are causing me undo stress because I'm afraid I won't live up to them. So yay more stress. She's also hinted at the fact that I'm going to become a drug addict if I take the opioid pain meds. *sigh* family, so fun. Debated on just telling them I have no one put me in a rehab center just to avoid all this stuff but I would miss my doggies too much.

I've now got even more questions to ask the potential surgeons about recovery plans, etc. so I am thankful for that.

My PT right now is pretty brutal and I sometimes wonder if I'm not doing more harm than good. I have a really bad habit of pushing things too far, so knowing that I'm going to have to learn to self-moderate a bit better. I'm feeling quite overwhelmed and want to put my head in the sand, cancel my appointment and move to a tropical climate to live out my days
 

Celle

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My PT right now is pretty brutal and I sometimes wonder if I'm not doing more harm than good.
Yes, you're definitely doing more harm than good. PT should never be brutal.
Post-op, PT needs to be gentle, bearing in mind that your knee will have suffered more trauma than if you'd broken your femur.

When is your surgery date, and which knee is being replaced?

This is the approach to recovery that we recommend, together with some more, informative articles:

Knee Recovery: The Guidelines
1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary
2. Control discomfort:
rest
elevate
ice
take your pain meds by prescription schedule (not when pain starts!)
don't overwork.
3. Do what you want to do BUT
a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you
b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.
4. PT or exercise can be useful BUT take note of these
5. At week 4 and after you should follow this
6. Access to these pages on the website

The Recovery articles:
The importance of managing pain after a TKR and the pain chart
Swollen and stiff knee: what causes it?

Energy drain for TKRs

Elevation is the key

Ice to control pain and swelling

Heel slides and how to do them properly

Chart representation of TKR recovery

Healing: how long does it take?

Post op blues is a reality - be prepared for it
Sleep deprivation is pretty much inevitable - but what causes it?

There are also some cautionary articles here
Myth busting: no pain, no gain
Myth busting: the "window of opportunity" in TKR
Myth busting: on getting addicted to pain meds

We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice.
 
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sondrals

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@Celle

It's my left knee. No surgery date, still trying to convince the surgeon I "need" one. My self reported pain level seems to be the sticking point. Or maybe he was just trying to make sure I'm sure because of my age.

So my PT has basically been to strengthen the muscles around my knees. I was discharged from from PT a month ago and told to continue the exercises at home to help prepare for surgery. The physical therapist said there's nothing he can do to "fix" my knee after seeing my x-rays and because of how high my PT copay is he discontinued therapy until after surgery. I of course think if 3 sets is good 6 is better :heehee:. I just have that type of personality which now sounds like that might be an obstacle for me.

I went into this believing I'd have a Fulkerson's procedure but found out TKR is really the only thing that will fix my knee due to anatomical abnormalities and because osteoarthritis has already set in I guess it's off the table anyways. So I was kind of blindsided with this whole knee replacement thing and I'm doing as much learning as I can now. Thanks so much for your thoughtful replies
 

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