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Ambivalence: in Denial or is it Not Time Yet?

AliceO

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Hi All
I'm scheduled for a RTKR on Oct 28th. I'm using the OS my sports medicine doc referred me to two years ago. Everyone raves about how he is the best in the region. I know a number of his TKR patients and they are all back to leading full lives--hiking, snowshoeing, horseback riding, backpacking, xc skiing.... which is where I want to be.

But I saw my sports medicine doc two days ago for a chronic neck problem, and when I told him I was scheduled for the TKR he warned me to be careful. he said I should manage my expectations, and not make a decision based on my friends' outcomes. He said I should not go into this because I want to backpack and xc ski, rather, he said the surgery is for people who are in pain and who want to be able to walk pain free. He said he has plenty of patients who are NOT happy with the results of the TKR surgery--though apparently they are not my surgeon's patients--and if i go into this expecting to be highly active after I may be very disappointed. he said to question my surgeon closely about this when i go in for my preop on Oct 17th.

That brings me to my history with my R knee, which spontaneously ruptured in 1973 and which has had 4 surgeries since, including a 1998 ACL reconstruction that is still going strong, two complete menistectomies, lateral and medial in 1976 and 1990, and removal of the condyle rim in 2003. the knee went valgus in 2010, after nine months of compensating for a torn labrum in my left hip. it was also at that time that my R foot went lame from peripheral neuropathy due to compression of the deep peroneal nerve. the neuropathy had me in and out of a wheelchair until I took up horseback riding in 2012. Then my sports medicine doc was able to treat the nerve damage in 2016 and I've done so much better since.

Up until 2010, I was extremely active. Even with no ACL for 25 years, I backpacked 20 miles a day with heavy loads, i xc skied hut to hut with a pack on my back, I canoe camped. the only things I couldn't do were running and jumping. but all this was interspersed with repeated knee collapses and on and off crutches. I was extremely strong and able to compensate--until I no longer could.

I haven't xc skied for the last two winters, and before then it was grindingly painful. the distances I can walk are getting shorter and shorter. my husband climbs and runs marathons--ill never do those things, but it would be great to go on long hikes together again. I cannot hike downhill without getting into trouble--and we live on top of a hill!

My main exercise now is horseback riding, and for the past few years I've been able to do extensive long backcountry camping trips on horseback. this is a very important part of my life--getting out into the wilderness alone. im a former wilderness ranger. this year I managed only 1 solo horse trek and my knee was very painful the whole time. its unfair to my horse to not get off and walk when I get to steep downhills, but my knee can no longer take it--i tie a hiking pole behind my saddle and do it anyway.

What hurts the knee most is just walking around the house or barn. But it is getting better since I started working with a chiropractor who is realigning my body so that my biomechanics are correct. the valgus knee is straighter and my sciatica has disappeared. I am now in less pain, but I'm still worried that if I try to fly somewhere (I haven't in 5 years) that the neuropathy will come back.

I am bone on bone. I do want to be able to travel without a wheelchair. but I am getting around at home as well as your average 63 year old who doesn't want to be as active as I want to be.

If my goal is being able to hike ten miles and being able to xc ski again, are my expectations and desires too unrealistic? should I wait another year--or until the knee is so bad that ill be happy just to be able to walk pain free?

Part of my thinking is that this is a good time of my life to do this, while I have my health, my husband, and before retirement reduces our income. after retirement, in a couple of years, is when I hope to resume traveling.
 
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rosieNZ

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Hi Alice
Bone on bone is not going to be comfortable unless new technology can rebuild us without joint replacement.
Denial? Sure! We all do it. I went on holiday (jaguar camp in isolated area in Brazil) ignoring my knee pain and it totally collapsed and developed a huge effusion. I then had 6months of pain. Orthopaedics gave me crutches whilst awaiting surgery but I was too proud for that and just stopped walking any distance (because I couldnt). How crazy was that!!
Now 6 months after my knee replacement I can do almost everything and it's still improving.
At first I just wanted to walk. Now I can see a life pretty much unrestricted. I'm 68. I work hard , have no pain and can do all the normal things. I dont ride horses but I could. Steep downhill walking can be uncomfortable but its improving.
My thoughts are:
- living a life restricted by pain is not worth it.
- as we get older life changes. We may not be as fit and strong as we once were. That happens without knee surgery.
Go for it! Who knows were it will lead you. You know where no surgery is leading you and have everything yo gain.
 

Pumpkln

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Sounds like sooner or later you will need a TKR just to walk comfortably. Horseback riding has become a trial, you can no longer walk downhill, and walking around the house or barn hurts most. IMO you are ambivalent, and know now is the right time.
Here is a Score chart: how bad is my arthritic hip/knee , take it an print the chart out. You will see just how limited your life has become, to help you decide if now is the right time.

Your sports medicine ortho specialist is a wise man cautioning you about all the extraordinary stories you hear. In fact most of them have forgotten all the challenges they went through.
Every one has their own recovery, do not compare yourself to anyone else.
 
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AliceO

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My fear is that I'll regret it if I end up with poorer function than I have now--always a risk.
 

Tykey

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What you should expect is to be pain free, it's worth it for that.
But I also agree with the doc who told you to manage your expectations. You won't be as good as new, but you should be able to do most things (except limbo dancing). But probably not to the same standard as before. You won't be a winner, but as long as I get to the pub before closing time, I'm happy
For instance, I can't run anymore, but I can walk for miles.

Comparing yourself to others is fraught with difficulties, almost certainly they have had to adapt to their own situation.

To be honest, I'm usually sceptical about sports surgeons being better than most others, because I've never seen a professional sportsman performing with a total knee replacement. But I'm sceptical about reputations in general
 

Jaycey

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My fear is that I'll regret it if I end up with poorer function than I have now--always a risk.
Highly unlikely! Sounds like you have major mobility issues now. This op will give your mobility back. Yes, there are cases where TKR falls below expectations. But these are rare.

Going into this journey with a positive attitude will really be a benefit. Read around the recovery section of this board. Plenty of happy members getting back to life after joint replacement.
 

Roy Gardiner

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if i go into this expecting to be highly active after I may be very disappointed
You might. But then you're not highly active now.
should I wait another year--or until the knee is so bad that ill be happy just to be able to walk pain free?
Why wait? Arthritis is only going to get worse. You are now at the peak of what you'll ever be able to do, I don't suppose you're pleased to hear.
My fear is that I'll regret it if I end up with poorer function than I have now--always a risk.
Highly unlikely in my opinion. My knees are better than they were for maybe 20 years before surgery. But even if it's so, you have every right to expect to be pain-free.
But it is getting better since I started working with a chiropractor who is realigning my body so that my biomechanics are correct. the valgus knee is straighter and my sciatica has disappeared.
In my unqualified opinion I suggest that your chiropractor has (a) fixed things that were wrong anyway and (b) more importantly corrected misalignments and stresses and strains caused by your bad knee. TKR knee will be straight and true.

I was bow-legged before surgery to the extent that I could stand at 'attention' and still shove my fist between my knees. BTKR fixed that - it may work for you, too.
 

pamsknees

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I was glad to see the responses to your question as I am in a similar place. I do fine at work walking very short distance from my office to exam rooms, but can no longer hike, use stairs, or even shop for long. I wondered if I should delay since I am ok at work, but have decided to go for it- I want to live life not limited by my knees
 

InkedMarie

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My surgeons would disagree with your sports Medicine doc. They believe that you do not need to be in a great amount of pain for TKR. If you cannot do what is *you*, thats a reason. It’s a lack of quality of life.

I do agree with the expectations/your friends part. You won’t know how your TKR journey will go until you’re in the middle of it. We are all different. Some of us have a harder time; others have it rather easy, like myself.
 

mainegirl1

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Seems like life is already limited by knees. @AliceO I was crying by the side of the Appalachian Trail a few years ago in early 2016 in pain. All I was trying to do was hike up a vertical of 800 feet over a typical New England rock field trail. Round trip of about a mile and a quarter.
A passing hiker coming downhill at a good clip asked me if I was OK. Turned out the year before he had a knee replacement and was hiking ten miles a day training for a 2017 traverse of the Appalachian Trail.

Just think how limited you are now. Maybe you won't be able to do the AT but for sure you will do more than you are doing now.

I had a hip and a knee done and am ready for the miles. However I have to build up to them as I got so deconditioned. While life is better ten years ago I was walking six miles a day with a full gear load and canoe on canoe trips over rough portages( usually 50 lbs). I can't do that now and will have to work back up to some endurance. Its not the hip or knee per se. its the muscles that lanquished as I did pre op.
 
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AliceO

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Thanks for everyone's responses. I went for a short, relatively easy, 1.8 mile hike last night. I felt awesome the first 2/3 of the hike--strong, pain-free, in alignment. but the last 1/3 killed me--a gradual downhill threw my alignment out and i woke up in pain and needing ice this morning. horseback riding and chiropractic and orthotics have been keeping me in balance and mobile. but simple downhill walking breaks down all the good they do. i see now that if i ever want to hike again i need a new knee. but as a result of my doubts, I've done far more research and have lots of good questions to ask the surgeon on Oct 17th at the pre-op.
 
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AliceO

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Follow up. at the pre-op with the surgeon on the 17th some red flags were raised.

Because I am hypermobile, the surgeon says he'll have to stretch my ligaments to get them to hold the implant securely. This will result in my involved leg becoming longer than my other leg. since i have had spontaneous ligament ruptures in the past, i am worried that putting my ligaments under strain like this is a bad idea and wont end well. also, having one leg longer than the other sounds like it will disrupt my gait more than the deformed knee already does. which could cause worse back and hip pain.

Then he said because the knee is vagus, straightening it will stretch my peroneal nerve and could result in neuropathy. I already have bad peroneal nerve neuropathy caused by the swelling in the knee and poor alignment. in fact the neuropathy in my foot is worse than the current knee pain.

I'm thinking about bailing.

Anyone else here hypermobile and valgus? how did your tkr go?
 

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