I Canceled my TKR. Now I'm regretting it!

Cat_Girl

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Hi all. I was scheduled to have my left TKR yesterday 9/11. On Friday, 9/6 I decided that I had some questions for the surgeon so I scheduled an appt with him. I must have seemed pretty nervous and unsure of my decision because he called me after I left his office and said he wanted to see me back on Monday 9/9 to go over everything and make sure we are "both on the same page". I do admit that I was extremely nervous because I know how big of a surgery this is and how long the recovery is. We started talking about my symptoms and I kept pointing to the area where my hamstring tendons are and how that is a big source of my pain. The surgeon said that the knee replacement would not get rid of that pain. I'm not saying that is the only place I have pain...I also have pain under my kneecap and occasionally on the lateral side of my knee and sometimes even the back of my knee. Mostly what I experience is a generalized overall achy, throbbing pain that gets worse with any activity. I also get sharp pains under my kneecap when I go up or down stairs. Now I am sitting here regretting my decision to cancel the surgery. I finally felt that I had some hope for my knee pain and I felt that I was moving in a positive direction....or at least in any direction other than spinning my wheels like I have been for the past 2 years. I was wondering if anyone else had cancelled their surgery because they were having doubts or second guessing themselves. Am I just being a big baby because I know my pain could be so much worse? The surgeon said that my xrays still look pretty good and that I have only a small amount of joint space narrowing. Should I wait until my pain gets way worse before I have the surgery so that I have no doubts that I am making the right decision. I am literally so confused right now about what to do. Any advice, thoughts or suggestions would be greatly appreciated.
Thanks
 
I totally understand where you are coming from being that I am 4 days from surgery and am feeling anxious and uncertain. Delaying the surgery in order to make certain that you are comfortable with your decision is the right thing to do if it brings you peace of mind. You can still pursue getting a second opinion or just postponing until it feels right for you. I too am anxious to hear from others if they have been in the same situation. In my case I am afraid of waiting any longer with concern of causing more stress to other parts of my body which are compensating. Think of it this way, you have just brought yourself more time to make the decision which is right for you.
 
Thank you for the reply. But I just wonder if I should be having more pain on a daily basis to justify the surgery?
 
There is nothing wrong with canceling surgery if it doesn’t “ feel” right for you. No guilt or shame. When you feel ready you will know. It took me years to finally get the knee replaced.
 
How did you know when you were ready?
 
The surgery is canceled, so don’t spend any more time wondering if it was the right decision. The decision was made, it’s a done deal.

What to do next is another big decision but take this time right now to regroup and try to relax. I understand your turmoil and confusion as I go through the same thing when faced with big decisions.

Spend some time here on a Bonesmart, check out the post op recovery threads to get a better understanding of the recovery. The more you know what to expect of recovery the better prepared you’ll be to experience it.
But I just wonder if I should be having more pain on a daily basis to justify the surgery?
I asked myself and my husband this same question. I was not bone on bone. I did have what I thought was a lot of pain, but only sitting down, standing up, and going up and down stairs. I was pretty good the rest of the time. But to be honest, I wish I had waited longer.
 
@Cat_Girl , welcome.
Love your cat face avatar.Lots of folks here with Nurse Cats to get us through this.

I scheduled my first lateral PKR when all of a sudden, I couldn’t walk down stairs! Also, the Euflexxa injections stopped helping (had always lasted 6 months, then suddenly, it barely lasted 3.). But honestly that was about 2 years past when it should have been done: I Ground my femur, aggravated my hip bursas, could only walk slowly for about 15 minutes on a treadmill. ( I had had previous surgery to remove torn meniscus in this knee.)

I scheduled the second lateral PKR the minute I felt the knee becoming unstable. I didn’t want to wait for the meniscus to completely tear. I then injured my foot and had to delay the knee surgery for five months—very uncomfortable months—until the foot healed enough. The meniscus was gone by that time.

I think the second knee surgery was a better experience because I didn’t wait until I was damaging my gait.

My surgeon, however, was very clear about the state of each knee prior, showing me on my x-rays, that I had worn through the cartilage, had extensive osteoarthritis, and was bone on bone in the Lateral compartment.

Good luck!
 
So you were bone on bone? My surgeon told me that my xrays only showed very minor narrowing of the joint space. I don’t want to wait until it gets that bad but I’m not really sure how I will know when it’s time.
 
My surgery is the 12th. I think I have a UTI so was kind of hoping I do so the surgery would be canceled. The nurse reassured me I would get IV antibiotics during surgery.
I too am worried. Afraid!
But maybe I can help here a little. I had been getting cortisone shots and was fine for three months. In January they stopped working on both knees. I can walk ok even now for about 20 to 30 minutes. I have no cartilage left in either knee. I'm surprised at how well I'm doing. In February my meniscus tore. My doctor told me it was my decision when, but surgery is my only option.
This year my knees have gotten worse. I hate to think of what lies ahead as far as both knees worsening.
I decided to go ahead now because I'm in relatively good health. Also I have to factor in the 2nd knee. I just turned 70. I want to be able to use these years ahead doing what I want to do.
In July my family went to Asheville. We walked to the Conservatory and back at the Biltmore and I was in tears. I hated not being able to keep up well with my family and hurting so much. I will remind myself of this in the days ahead.
Everyone I've talked to says they wish they had done it sooner. I think that when the pain and limitations interfere with your daily life it's time. However, stem cell injections sound a lot better than surgery! (Available but not quite ready).
I wish everyone the very best of whatever you decide to do. You are in my prayers. Please keep me in yours.
 
Maybe it's time to consult another surgeon? Maybe your hamstring pain isn't caused by your bad knee? IMO you perhaps need more information to make an informed decision?

When your knees rule your life , it's time
 
@Cat_Girl - How much does your knee affect your quality of life? Assessing that may make a difference to knowing when you're ready for surgery.
Here's a chart you can fill in. You can also print it off to show to surgeons.
Score Chart: How bad is my arthritic knee?

Am I just being a big baby because I know my pain could be so much worse? The surgeon said that my xrays still look pretty good and that I have only a small amount of joint space narrowing. Should I wait until my pain gets way worse before I have the surgery so that I have no doubts that I am making the right decision.
I don't think you're being a baby. You need to be sure that you're ready for the surgery before committing to it.

Don't be put off by the thought of post-op pain being worse than the pain you have now. Yes, you will have increased pain for a while, but that can be controlled by a suitable medication regime. And the post-op pain will be getting better every day, instead of getting steadily worse. You say you've been spinning your wheels for 2 years now. Don't wait too much longer, because arthritis is sneaky. It erodes your quality of life so slowly that you sometimes don't realise that's happening.
 
I get the impression that surgery was agreed on the basis of where the pain is.

An Xray is fairly fundamental in establishing where the problem lies. If the bones are in the right place and the cartlidge isn't worn through, I would be having second thoughts as well.

So have I missed the bit about the xrays?
 
I understand your hesitation, as I waited too long for my left TKR. I Was in extreme pain, and my leg was visibly crooked. Eufflexa injections had kept me going for 5 years, all that time bone on bone. Especially since the surgeon told you it would not fix your pain, certainly persue other options. Best of luck!
 
Not knowing if it's the "right" time to do this, or if it's better to wait, is a problem for many people. It's better to be sure it's time, rather than second guess your decision before, and especially after, the surgery. It helps to get a second, or even third, opinion from a doctor, or doctors, who are not associated in any way with your first doctor and who are not in the same office, or golf buddies, etc. It will also help to fill out the score chart Celle left you to get an idea of just how much of your life your knee is robbing from you. Talking to those close to you to get their takes on how much you really are hampered by your knee is also helpful. You want to go into this surgery knowing it's the right time, and you want to be in recovery knowing it was the right thing to do. This recovery is not easy and having questions about really having needed to do it in the midst of a tough recovery is not helpful. You need to know that even though you're having a tough day, or a painful day, it was necessary to go through to take your life back. When you've done all of these steps, and then decide to do it, you will be ready to face the surgery and recovery knowing it's the very best decision for your knee and your life.
 
I had patella/femoral bone on bone and it hurt going up and down stairs especially. I had been told for 5 years that I needed TKRs bilaterally but waited until the injections no longer worked. When the time is right, it will probably be the best thing you ever did, but for myself, I wish I would have waited a little longer as well. It helps the bone on bone pain but a replaced knee is not the same as your normal knee. After my surgery, I asked my surgeon if it was the right thing to have done. He said he had seen worse but he would not have performed the surgery if I didn't need it.
There are some excellent videos on https://jointawareday.org and some talk about when the time is right for you. If you get a chance, take a look at them.
You can always reschedule when you feel the time is right.
 
Thank you for the reply. But I just wonder if I should be having more pain on a daily basis to justify the surgery?
As an FYI, my surgeons use many reasons to justify TKR. I had pain in my knee so I had it replaced.

My other knee has been my problem knee for over 40 years. I don’t have much pain but the knee is unstable. That is a reason for replacement.
 
I just wanted to 2nd what @InkedMarie just posted. I had gone 3 years knowing how bad my right knee was but I found ways to compensate and avoid the worst of the pain. The problem was I gave up almost all exercise, which is a big part of my life. Plus I had major joint instability in that knee.

The pain was definitely a problem at times, but the instability was much worse, and the knee wasn't trust worthy.

I also agree to get more opinions. The surgeon who did my knee replacement was a reconstruction and replacement specialist who had seen it all and done it all... His radiology staff took x-rays of my knees in positions I had never had them taken before... That is even with 10 prior knee surgeries, across 2 metropolitan areas, and 5 other surgeons. His new x-rays showed my knee was much worse off then 3 other doctors had said and actually explained why I was in so much pain and had so much instability.

That is what convinced me I DID need the knee replacement NOW, and that I had already waited too long because other parts of my body were being affected severely.... And that happened overnight in just a month or so.

The key was it gave me a wonderful peace of mind, helping me to know I was doing the right thing. Personally, I just don't think this doctor and one set of x-rays is enough for you to make this decision. I do wish you the best and hope you can get some more information.
 
I understand how you feel! Especially if xrays show hardly any sign of degeneration.

I’m booked for TKR on 14th October... my xrays show bone on bone & affecting the femur... however this last week the pain seemed to ease off... I considered cancelling... but tonight I stood for an hour cooking dinner for family & Im in impossible pain... Time to get it done!!! It’s a tough decision for you... which only you can make.


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My doctor never pushes. He says each patient will know when the time is right for them.

Since you have the tendon issues get them evaluated. What can be done to make that better. Knees will fix knees but not help hips or other problems.
The more you know the more confident you will feel about any decision you make. Knowing "YOUR" potential outcome and how surgery might change/improve the way you live life, is really important. It's good you asked that question rather than have the surgery and be unhappy that a key pain issue wasn't resolved.

My neighbor is probably 20 years younger than I and the doctor told him to just put up with the knees as long as he could so he gets around with a bit of a limp at times but no plans for surgery.
For me at 70+ with no cartilage at all and an unstable knee, it's either compromise quality of life or replace it and get on with life without the ache or feeling like it's going to collapse when the bones shift.

Every person here has a little different story. You are unique so take your time and wait until you know what decision you need to make and that the time is right for you.
 
When I had my first TKR I had a hard time walking I needed a cane that was in Jan. 2016 I have decided to have my other knee done Sept 25th 2019. This knee isn't as bad as my first knee but the XRays show that the bone on bone was very close so I didn't want to wait too long and let it get real bad again. I'm not getting any younger .
So if your not in a lot of pain wait and get a second opinion.
 

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