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Need LTKR but can't face it

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beachlady2

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Hi everyone,
I see this forum is "for those anticipating knee surgery" -- but I hope it can also help folks like myself who need a LTKR but are resisting it fiercely. I am currently taking 400mg of Celebrex that helps make pain manageable. But when I read about the post recovery -- the pain, limitations, dependency on others , emotional stress, -- I just get nauseous.

I don't have a support network, and am generally an impatient person , with more negative than positive positive thoughts at times. Remaining active is essential to my sense of well being -- even if that activity has been restricted and is painful at times. I haven't been to the hospital since childbirth 40 years ago . I've been bone on bone for years, but for the past year +. the pain has become severe. Have tried many things-- regular exercise, keeping weight off, synvisc, acupuncture, arthroscopy- but the pain has taken over this past year. Limping has become severe until I went to 400mg of celebrex.

I'm concerned that the physical and emotional toll of post recovery will be devastating for me . Guess that means I'm not ready to have the operation. What are the consequences of waiting and taking 400 mg of celebrex?
 

Titianlady

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Hi and welcome! Well, my dear, we all know about that fear. Most of us here have postponed getting out knees replaced because we were afraid!! Eventually, we all faced the fact that we could not postpone the inevitable anymore and went for it.

I was one of those. I postponed getting my knee replaced for years after I was bone on bone. After I finally had my surgery, I actually
said to myself, 'why on earth did you wait so long'! The surgery and recovery were NOT THAT BAD!!!!! I had really thought in my mind that it would be horrible, just like you my dear, and the actual recovery didn't come anywhere close to what I had imagined at all!!

As far as the consequences of waiting, yes there ARE. The joint can deform. The ligaments and tendons can stretch or contract permanently. The muscles surrounding the knee can become weak.

All those things can make the surgery tougher, and the recovery longer and harder!!! We all think that waiting is not harmful, but that can be a huge mistake. NOTHING stops the degenerative process once it starts dear one. The damage continues, and gets worse.

Stop and think about this.. You are suffering endlessly now..this pain will NOT go away with time, only get worse. The discomfort of a knee replacement surgery is TEMPORARY!!!!!! In fact, you will notice that the day after surgery, there will be NO BONE ON BONE PAIN!!! That horrible pain you are feeling right now will be GONE!!

In just a matter of weeks, you will walk better than you have in years!!! You will be free of that terrible pain you are enduring now.
My recovery was uncomfortable, But certainly NOT like the pain I had before the surgery!!! NOT EVEN CLOSE!!

Let us help you on this journey. We have all been there..from the denial, to the rationalizations for waiting, to the fear. We understand my dear. And we have been surprised when our surgeries and recoveries have not been anywhere as painful as we horriblized them to be in our minds because of fear!!

Most of us here wonder why we waited so long!

I, and so many here, are doing things now with our new knees that we couldn't dream of doing before!! And we have gotten our lives back!!

My dear, you DESERVE a life of quality. Life is to be enjoyed, not just endured!! A new knee will give you a new quality of life again!!!

Please, don't wait another minute to get your life back.
 

Phoenixx29

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I totally understand what you are saying - I have never had any kind of surgery - ever, so to say I'm scared is a definite understatement! Anticipating any kind of surgery is enough to make anyone apprehensive, and the prospect of TKR is quite overwhelming. You are asking about the consequences of waiting? I can't tell you about the long term effects of being on Celebrex, but one thing is certain, your knees will not get better, they will only get worse. Do you really want to put up with potentially increasing pain and the restrictions it puts on your quality of life?

I try to take the long term view on this - a few months of discomfort/emotional upheaval will make up for the experience in the long run.

I am lucky that I have my husband to look after me when my time comes. But there are others on here who have managed perfectly well on their own after surgery. It won't be a walk in the park, but from what I have been reading on this board, it is manageable. I'm sure some will be along soon to share their experiences.
 

Titianlady

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If you look on the forum, you will see that we have folks here with new knees that are skiing, biking, hiking, even running in marathons!!!
Our member , Skigirl, is a ski instructor, and she has TWO knee replacements!!!
 
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I am one month out today and was bone on bone for close to ten years but really didn't have much pain till the last month before surgery. My OS finally made me have the surgery because I had 20*of collapse and he said if it got any more deformed he couldn't get a good result. I dreaded the surgery since I didn't hurt. I can't say it is easy now, and I have some pain and am facing trying to rehab muscles that have been contracted for ten years....but I have not had a moment of regret. There are meds to help with the pain and lots of fabulous advice on this site to answer questions you have. Honestly knowing you have a world of online friends to help you is an incredible comfort! I was terrified about the surgery and found that writing in my journal helped a great deal. Hope you are able to come to a decision soon.
 

skigirl

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I totally understand your feelings----I had those same feelings. I let my left knee get so bad that it bowed out 20 degrees and made me walk like a sailor. I won't kid you, the rehab is long---and it is limiting at first. But, right now I am still a ski instructor and I no longer wear two braces to ski.

With my right knee, I did the replacement much earlier and the recovery was a walk in the park compared to the first knee. But, let's get real about the recovery process----I will tell you my experience.

first week. I was in the hospital for two nights. I walked to the bathroom about two hours after I got back to my room after surgery. Lying in bed with my knee elevated on three pillows taking percoset every 3 hours--all night long. I had a notebook beside my bed to write down when I took a med as I was confused. I was able to get up and go to the bathroom, walk downstairs to my studio and fix my own lunches and get my own ice. I slept a lot.

week two. More of the same, but the periods that I was awake were much longer. I now took percoset every 4 hours---half the dose. I still had to elevate the knee, I was in bed about 70% of the time. The rest of the time, I took walks around my house and some short strolls outside too, with crutches. Inside, I never used a walker or crutches. I started driving at the end of week two. I live in a small town, no freeway driving at all---the nearest freeway is 100 miles away.

Week three: some of my friends came over and took me out to lunch. It was fun to be out of the house. I no longer used crutches. I rested about 50-60% of the time. I switched pain meds to tramadol a milder narcotic or tylenol 3 every five to six hours. I read, watched Jan Austen's videos, learned to knit and slept. I fixed most of my meals---mainly simple stuff like grilled cheese and salads.

Week four I forget to tell you but I had been going to pt in a pt facility with a gym three days a week for an hour. I could ride a bike at the end of week on. On week four, I took a long ride with my bike group. I was weak and had to have more stops, but they were very kind and the pace was fairly slow. We went 12 miles. I am often still lying down with the knee up---five times a day for at least 30 min.

week five---Now I get to step it up. I begin to ride with my bike group for the 20 mile ride steadily now, every week. I am working out a lot more at the gym. I am still tired by the end of the day---which for me was about 4 pm!!! I ran out of steam fairly early and just plopped into bed with my knee up.

Weeks six to eight: These weeks showed a steady progression in my strength. I began to live a more "normal" life with many rest breaks. And my day still ends after dinner when I plopped onto my bed for the long rest!!!

I will say that I had a really good knee surgeon. You need a knee specialist who does about 300 or more knees a year. My doc does Minimally invasive knees, so my scars are 3.5 inches long. Do your homework about looking for a doctor--that is your most important decision. Kelly
 

believer

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Titianlady, this is exactly how I feel. I am afraid also but I believe the pain will get better with time and with time now it is getting worse. I have been dreaming about what life will be like once I can move without fearing the pain.
 

madame uk

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I was bone on bone for several years. and on Lodine, which isnt celebrex, but is a long acting time release NSAID, I was taking this medication for nearly 10 years, however although it enabled me to be able to walk, I finally suffered stomach problems, and had to come off the pills, I have just had my second tkr, and can truthfully say that just 9 weeks post op, I am as near normal as I have been in quite a few years, the digestive problems however remain.I am not suggesting that the same will happen to you, but maybe it is something you will take into consideration.I also hoped against hope that " things would get better" , but I knew realistically , that due to arthiritis that wouldnt happen.I really hope you find the strength to have Surgery when you really need it, I dont think anyone could be as petrified as I was, I didnt sleep for nearly 6 weeks before my Tkr, but the people on this site, " kept me going",and I think that like childbirth, it cant be that bad, or we would only do it once, I ended up with TKR in both knees!!! , and feel that Ive finally got my quality of life back, I wish you well whatever your decision
 

kneeper

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Adding to the great comments above---You shouldn't be scared hearing of reading people talking of pain etc on these threads. People feel safe to let it all hang out here among fellow kneesies. We can definitely offer support here.
 
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beachlady2

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My sincere thanks to everyone who took the time to respond to my posting. I'm still digesting them. Still have big fears which are really important to me-- more than knee pain . Would really like to hear from anyone who had any of these concerns and how you dealt with them:

** tendency towards depression at times of stress. TKR=big stress. How do I avoid having this become big depression?
** I've lost 60 pounds over a lengthy period of time and and have kept it off over 10 years thru daily exercise (spinning and weight training ) and watching what I eat-- but it's still a battle for me. Carbs are my problem.
How do I avoid significant weight gain during recovery?
** losing all the muscle strength I've built up over the years partic. upper body.
Again, thanks to everyone for your caring voices.
 

Titianlady

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I have a friend that is very, very athletic, and works with weights every day. She has a tremendous upper body physique..muscular and I wish I had her arms and upper body!! She had these same fears before her TKR just a couple of months ago.
Within 10 days of her TKR, she was sitting and using weights and dumbells and working her upper body!!! She never lost her muscle tone at all. You won't be an invalid dear!!! She had the same fears you do. Afraid of the surgery, afraid she would loose all the muscle she,had worked years to get, fear of depression.

Well, she was almost embarrased after she had her TKR that she had worked herself up to such a state.
In just two weeks she was out taking her Dailey 5:00 am walks!! She walked every day for at least 3 miles before the surgery, and it didn't take her long to start those walks again..of course not 3 miles to start with, but now after a couple of months she is walking 2 miles and getting more distance all the time.

Most of us here did NOT,have an appetite for a short while after the surgery. That is probably due to the medication. It is important to eat a good diet rich in protein while we heal.

Don't worry so my dear. You will be just fine!!! We will be here when you need us. Lean on us, and trust us.
 

Campervan

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I didn't gain weight, in fact the opposite. And I ate tons of Christmas Cake as my rehab was over Christmas last year. Toni's first post above (Titianlady) puts everything beautifully. In July 2010 my surgeon said he'd operate whenever I wanted him to. I didn't quite feel ready and with diclofenac NSAID I got by for a year and then wanted it done August 2011 but work commitments got in the way. I finally had it done in December 2011 by which stage I couldn't walk for more than 5 minutes without being in agony. The day before my op I had to use my 2 year old niece's stroller as a walker.

In the July 2010 I then had lost extension of plus 10 and surgeon thinks it was greater than plus 15 by the time he operated. He said the ligaments up the back of my leg were shortened because of all this.

So don't try to leave it too long. If in pain, do it now.
 

Jamie

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These folks have presented some excellent information for you. I hope you can begin to see that the surgery can mark the beginning of a new and more active life for you.

You should not have problems with loss of upper body strength. You'll be able to do those exercises as soon after surgery as you are ready. Normally folks have a period where they aren't particularly hungry in the first weeks after surgery, so weight gain is not something that always happens. While you will be somewhat limited on activity for a while, you won't be bed-bound. You need to be doing gentle exercising (stretching and bending), working slowly on a bicycle if you have one, and walking around your home. You will marvel at the difference in pain. With the arthritis pain gone, what is left is the "healing" pain from surgery that is temporary. Plus....in today's world, this pain can be managed with medications, ice and elevation. Arthritis pain really cannot be "managed".....as you know from your own experience! It keeps coming back.

In addition to the risk of joint deformity, delaying your replacement too long also means continuing on the 400mg of Celebrex. That is a higher dose than what is considered "normal" (200mg). My personal opinion is that you need to find a way to reduce or eliminate that level of the drug. You really don't want to risk stomach or kidney problems because of long term use of an NSAID. If you had no other alternative, it would be different. But you do! Knee replacements are one of the most successful surgeries performed today.

So....make sure you have an excellent surgeon who does at least 200 knees a year and go for it. Each day you wait is a day lost out of your life. You deserve to enjoy these important years.

We will be here to help support you through the process. Everyone here has felt at least some of what you're going through. If you are concerned about depression, then you need to discuss that with both your surgeon and whatever doctor is treating that for you. It can be managed as well. The fact that you recognize the potential for a problem is the first step to making sure things are addressed BEFORE there is a major problem.
 

LinZee77

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Kelly I have to say I always admired your grit, and perseverance, and you truly are the "Platinum standard" for the post-TKR (x2) patient and kudo's to you for this incredible testimony of your experience, however, please keep in mind that many of us are not as athletic, have the same pain tolerance, and the same ability to heal in quite such a rapid fashion as others, so it is important to advise those who are coming here that there is a wide spectrum of recovery curves, with yours being perhaps on the highest end of the curve. That being said, you do give me hope that perhaps the second time around may be a lot easier than the first, because I know what to expect now, and can train my mind in a place of strength and positive direction if I realize the post surgery part is temporary, albeit inconvenient, but very necessary.
Thanks for the reminders....
 

Josephine

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One thing I CAN promise you without any hesitation or doubt: arthritis NEVER gets any better - only worse and then worser!
 

referee54

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As Josephine says, it does not get any better---but I would like to put forth this point---life is to be enjoyed, it is not to be endured. We all have tried to get the most "mileage" out of our knees, but there comes a time when we have to face the reality of the situation.

A TKR recovery can be challenging, but, in the end, you will be amazed at how great you feel. We will be here to help answer questions, deal with your concerns, and help you thorugh any challenges or answer any questions.
 

ruppbike

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Sarasota Lady -

To answer your questions specifically:

** tendency towards depression at times of stress. TKR=big stress. How do I avoid having this become big depression?

For myself, I was in more stress with the knee pain. It made me depressed and irritable and not fun to be around. Going through the surgery and rehab was a stress, physically, but mentally it was a time to focus and I had a singular purpose: getting myself better and ridding myself of the constant present and never ending pain in my knees.

** I've lost 60 pounds over a lengthy period of time and and have kept it off over 10 years thru daily exercise (spinning and weight training ) and watching what I eat-- but it's still a battle for me. Carbs are my problem.
How do I avoid significant weight gain during recovery?

As others have said, appetite is diminished early on by the drugs. Additionally, the caloric requirement for the repair your tissues are going through is like exercising, it uses up calories. I too was worried about gaining weight, and also lost significant weight (45 pounds) earlier in my life and kept it off with vigorous exercise. After the swelling went down I returned to my pre-surgery weight and did not gain much for the first 3 months, that is when the repairs are soaking up the calories. After that I could return to an activity level that kept the weight under control. Today I am back to a very high level of activity and doing things like hiking that were not possible before the surgery.

** losing all the muscle strength I've built up over the years partic. upper body.

No need to worry here, you can, and should do what I call "pre-hab." In other words, get yourself ready for the recovery and rehab by building strength all over, particularly your upper body, as that will come in real handy early on when your arms need to carry the load, sort to speak.

Biggest concern of the ones you have mentioned is not having support. I had great support with my wife taking care of all that needed to get done. Is it possible to get someone in your home for the first week back? For moral and educational support - you have that right here!

From the sound of your determination to work hard to lose weight, I would guess that you have what it takes to get through this physical hurdle, especially since it will end your constant pain and make possible a very active and rewarding life afterwards. Wishing you the best. The decision to GO is very difficult. I delayed mine for several years. But today, I am so thankful that we have the technology and surgeons that make it possible to remove the conditions that would otherwise be crippling - both physically and mentally.

Kurt
 

RestAssured

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I can tell you that having knee replacements has given me a quality of life I hadn't enjoyed for the previous four years! I am able to do so much more and now I wish I had not waited! Oh well, I am living a life of quality now instead of quantity. Went through shots, Celebrex everything to avoid doing what has been the best decision of my life! :happydance:
 
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beachlady2

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I'm hoping to go into rehab for as long as medicare will cover it, and then will need help at home with driving, food shopping, etc. . I hate having to depend on others, but have no choice. if I want to get the knee done.

Mentally, I understand what you all are saying -- and I really appreciate the time you've taken to give me advice and support. Emotionally I'm still not in the right place for the TKR.-- but at least I'm working on it rather than avoiding it. Our local hospital has a class for people considering joint replacement, and I plan to attend. Haven't gone to the Dr yet for consultation -- I'm going to an orthopod that's highly regarded in my neck of the woofds. But should I get a second -- or third -- opinion?
 

Titianlady

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Sweetie, just make sure that the surgeon does at least 200 knee replacements per year..not just knee surgerys, but replacements.
So many of us here were scared, scared, scared, but found out afterwards that it wasn't as terrible as our imaginations made it out to be.
Now, you will be recovering from a major surgery, so do NOT feel guilty having to depend on others while you recover!!
Your job will be to rest, ice, elevate and do gentle stretches and heel slides.

As many have said, there is far too much pushing to do way to much physical therapy. DON'T let them work your knee like mad. You can refuse the PTs pushing you to 'work hard'. And don't let them scare you by putting a time limit on getting a certain number for range of motion!! They seem to love to do,that. Don't listen. Range of motion comes at different speeds for each individual dear one.

You will do just fine, and we will be here to let you know the real information!! Even the joint classes you are going to probably will have some gaps in info that we can provide for you. We've all been through it, so we know firsthand.
 
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