KNEE ARTHRITIS - Total Knee Replacement :
HELP! POSS TKR BOTH KNEES - - Posted by maxfactor (maxfactor), 21 April 2004
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I've had no kneecaps for 22yrs. The pain has become unbearable. I'm on morphine right now after having had everything else. Many OS's say I'm much too young for tkr (I'm 42), but some are saying that being on morphine is worse. There's a possibility I might have both knees replaced. What should I expect? My bilateral patellectomy was the most painful thing I've ever gone through (even childbirth). Is TKR worse? Can I do both at once? Should I even do this? Is pain management my only option for the rest of my life? And won't I grow tolerant to everything eventually? I'm 42 and feel 90. Stairs are always avoided, if not, it takes a long time, holding on for dear life. I work full time (sedontary) and have a 9yr old son. Advise anyone? Thanks so much. I just found this site and can't believe there are so many people who actually understand what I'm going through.
Jane
Posted by heronak (heronak), 22 April 2004
Oh Jane, what a bummer! You are absolutely not too young for TKR, they are being performed on folks our age (I'm 43 and need a LTKR). We will probably need revisions in our lifetime, but quality of life NOW is more important, and being on morphine can't be fun. If you can, I'd find a different OS who believes that it's all about quality of life, not age.
Check out http://forums.delphiforums.com/onourfeet/messages to talk with a group of TKR folks, past, present and future. You will find a great bunch of people, just like here, but they're talking strictly TKR. All the best to you,
Heron
Posted by Jan_L. (Jan_L.), 22 April 2004
Hi Jane,
I had a TKR 4 months ago, I was 47 years old at that time. The reason doctors usually say someone in their 40's is too young for this surgery is because TKR tend to fail after 10 to 15 years. They usually last only 10 years for someone in their 40's because 40 year olds are usually more active then someone in their 60's. The sucess rate for revisions drops significantly with each revision. My OS told me that this puts a surgeon in a difficult position. If the OS does the surgery early then the patient may end up in a wheelchair when they are in their 60's. My OS kept putting my surgery off until I was struggling to walk short distances and was forced to use a wheelchair on a regular basis.
The good news, is that their is a new type of implant available that last much longer called an Oxinium implant. This is the type of implant I choose. I suggest you take a look at their web site: www.strongasanox.com
It's not being used very much yet because of it's cost, over $9, 000 for just the prosthesis. Much to my surprise and relief my insurance company paid the bill without a fuss.
The Oxinium implant is ideal for young people in need of a TKR.
Good Luck!
Jan
Posted by Sandy_F (Sandy_F), 22 April 2004
I have had both my knees replaced. I was 45 for my right and 48 for my left. You are not too young. Others are right that you will probably need a revision later in life. I would rather look forward to that than be totally limited at a young age.
My right knee had 13 previous surgeries including a patellectomy. That knee was more difficult to rehab but it is doable. You definitely need to find a PT that understands the difference in mechanics in a patellaless knee. I actually got a pseudo patella put in during the replacement. My OS used a piece of the bone removed and made a pocket in the patella tendon, placing the bone in the position of where a patella should of been. That has helped a bit but it is still not as good as a knee with a patella. As far as I know I was only the second person that this was done for.
Posted by maxfactor (maxfactor), 22 April 2004
Thanks so much for your replies. I'm getting all the info I can on the Oxinium and I'll take it to the next specialist I see on May 7. Can you tell me how bad the pain is after TKR? Is it realistic to ask for both at once? Also (and I know this is probably stupid to even think about) will they make a cut down the middle of my knee or use my old scars which are 8in along the inner part of both knees.
I used to be so brave during all my surgeries. I don't know why I'm so scared.
Thanks so much for your help!
Jane
Posted by Beauzer (Beauzer), 22 April 2004
Hey guys,
I've been reading some of the latest literature on TKR. I'm in a similar pickle, needing one, but am only 29!! Oxinium is the latest material. It's interesting, though, because with the newer materials they've been using for the past few years, even the "standard" TKR's are quoting a 85-90% 15-20 year survival rate. OK, so do the math on that one, if we're being told that an "average TKR" will only last 10-15 years, how is it that 90% of the knees are OK at 15 years. That doesn't jive. 
According to some of the joint specialist OS's I've talked to, the joints are holding up much better than they were even 10 years ago and this should be changing their thought processes on young folks and TKR. It's just not catching on that quickly.
Danielle
Posted by Jan_L. (Jan_L.), 22 April 2004
Hi Jane,
If you are interested in the Oxinium knee after you check out their web site you might want to call their 800 number. When I called them, they sent out a large packet of useful info. If you call the 800 number they will send you a list of doctors in your area that are using the Oxinium implants.
By the way my doctor had never done a TKR using an Oxinium knee implant when I first talked to him about it. After he researched it for me, he became excited about it. He told me if he had to have a TKR, this is the one he would want put into his leg.
I had my surgery done in a large hospital (ranked in the top 10 in the nation by AARP) and I was the first person to get the Oxinium implant at that hospital. The day of surgery the hospital admin. told my doctor not to make a habit of using the Oxinium implants. The hospital was afraid of getting stuck with the bill.
I just wanted to make you aware of some of this because if you lock in on the Oxinium implant you may have to change doctors or hospitals to get it. After doing the reserach on the different implants I was certain that I wanted the Oxinium one. I had to tell my doctor I would pay the difference if my insurance company refused to pay for it. I was so relieved when I discoved the insurance company paid for it in full. My knees were damaged in an auto accident so it was my car insurance that was responsible for the bill.
In terms of the pain, it's a big surgery and it's going to be painful. My doctor was great about giving me whatever I needed to be comfortable. I think you can become frightened by asking others about the pain. Everyone responds to pain differently and each surgery is unique. I think it more important to ask about your doctor. How has he/she responded to your pain in the past? Did your OS do a good job keeping you resonably comfotable after your previous surgeries? If not, then I would discuss this with your OS prior to surgery. OS's seem to not be the best at pain management, my interist has been manageing my pain for the past couple of years. I know she has been much more sensitive to my pain then my OS would have been. If people respond to your questions about how painful this surgery is, I think all you will find out is whether or not their doctor managed their pain or if they were left suffereing. I think it's important to have a surgeon or interist you can trust to manage your pain before you schedule this surgery. I had my surgery on Dec 4th, 2003 and I am still taking a lot of pain meds. I don't think that's normal, I still have quite a bit of pain because I developed severe scar tissue (arthrofibrosis) which is rare. I am so grateful my internist has been so wonderful at managing my pain. I have read several messages from people with this post op complication and their doctor weren't managing their pain and they were suffering needlessly.
I hope this is helpful. I had had a lot of surgeries prior to this one and like you, I was scared about having a TKR, which surprised me becasue I wasn't scared with the other ones.
Jan
Posted by maxfactor (maxfactor), 22 April 2004
Jan,
You have been such a huge help to me. I guess I asked about the pain because I'm nervous. It seems as though I've become a complete whimp these last few years. I know it's going to hurt.
I'm seeing a new OS in a couple weeks. I've been to 5 OS's that won't touch me. This one actually read my history, saw that I was taking morphine, and called me for an appointment. I don't know what he'll say, but he must have something in mind if he wants to see me. I'm not in a wheelchair yet (although for long walk days like Disneyland, etc I need one), but I'm getting there. Just about everything I think I can do, I pay for 1000 times more than I think I will. I've been hyperextending my legs for years, and the back of my knees are really bothering me. It's making it hard to walk (hyperextend) and my quads are pretty week so they give out.
I'd like to do both legs at once, however when I had my bilateral patellectomy, I had to beg the doc to do it. He said it was too painful. He wasn't lying. I just can't imagine going in for the 2nd one so I'd like to get it overwith. I'm not a whiney baby after surgery. If they want me out of bed the same day, I'll do it. I fear that bending machine though. I can't imagine my legs in that right out of surgery. I wonder if they do that with everyone.
Again, thank you so much for you help and advise. After all these years I can talk to someone who gets it. My family tries, but they just don't. I'm in CA USA by the way. You are a special lady for using your experience to help others...
Jane
Posted by Jan_L. (Jan_L.), 23 April 2004
Hi Jane,
Like you, I felt so relieved when I found this web site a couple of months ago. Up until then I felt so alone and misunderstood. It is so hard to be young and in severe constant pain. People have no idea what it's like to live like this and no one wants to hear about it. Severe contanst pain really takes it toll in ways you can't understand until you go through it. Most people in their 40's are active and healthy and have no idea what it's like to deal with this level of pain. I want to be able to do the walking you do in daily living without being in so much pain. It's so hard when you have to decide if some activity is worth the increase in pain. I say no to so many things because I am not willing to suffered afterwards, the price of a couple of hours of fun becomes to high, which makes my family angry at times.
It helped me to read your message. Once again I knew someone else understood what I was struggling with also. When I told people I was worried about having this surgery they would laugh and say they couldn't believe I was worried esp. considereing how much pain I was in or how many surgeries I had already had. Deciding to have a TKR, is a much more difficult decision than having other surgeries. With other surgeries doctors didn't say you're too young.
I hope the doctor you are seeing can help you. Why did the other OS's refuse to do the surgery? How long have you been on morphine? How do you spend your days?
By the way, I'm in Michigan.
Jan
Posted by maxfactor (maxfactor), 23 April 2004
The other doc's said I was too young for TKR. That was after they lectured me about how stupid I was for letting someone remove my patellas. I told them I went in front of a board of 30 OS's because my OS was so torn. 28 out of 30 said to remove them. I was 19 and my mom and I thought it was best.
I've been on pain meds for about 3-4 yrs. I started with Vicodin and eventually built up a tolerance to where my GP didn't want to give me anymore. For about a year I self medicated with Tylanal, Advil, anything that I thought could get me through the day or night. My GP said I was going to kill my liver and sent me to pain management. I started out with the low Duralgesic (.25 or something like that) with 3 Norco per day. Didn't work. I was heading for the over the counter meds. I ended at the .75 patch with 4 Norco per day, and a couple weeks ago was put on the Morphine. My PM doc was going to put me on Methadone. Can you believe it! I was freaking out. Anyway, I had Morphine during my surgeries and had no adverse reaction so I agreed to it. It's 60mlg every 8hrs. Norco twice a day. It's absolutely helping me tolerate the pain, but these are heavy drugs. My sisters went nuts (not understanding that I don't feel loaded or woozy because of my tolerance level) and started searching for OS's who would help me. Actually, they've gotten the whole Oakland Raider organization in on this, just from someone knowing someone else, and the doc's are very interested in my case. Not too many with bilateral patellectomy. We'll see what happens. I'll have to discuss the whole pain killer thing. I'm probably physically addicted, although I've never gone nuts looking to get more drugs. I don't feel addicted, but, realistically, my body probably is. I just wanted to get through the day. I have a full time job and a 9yr old son. Anyway, I'm thinking I'll have to wean off the drugs if they do surgery and it works. I can't imagine living without pain, or being able to tolerate it without at least some asprin. But I can certainly hope to look forward to it. I figured that eventually, I'd build a tolerance to Morphine and be in big trouble. Sometimes the pain gets so bad you want to drive off a cliff! I asked one Doc for a corpse's legs cause they had to be better off than mine! Thank God I have a wonderful support in my husband, son and sisters and brothers. If my mom were alive, she'd probably be kicking some major OS butt. Let's keep talking, if you don't mind....? All of a sudden I'm seeing a light at the end of this never ending tunnel. I won't get my hopes up too high, but I'm already better off after you 1st response!!
Jane
Jane
Posted by Len (Len), 15 May 2004
Hi Jane,
As a first time poster on this great site, I may have inadvertantly sent a partial reply. If so please forgive me.
If you haven't already gone through your TKRs, a couple of things that hopefully, will ease your concerns a little bit (I had a double TKR in late February). First, you will be pretty doped up for the first day or so after surgery so pain is considerably reduced. I felt the passive knee motion machine to actually be fairly pleasant with no pain at all. They usually start up with a ROM of about 75 degrees or so and are supposed to increase it with time although in my case, no one ever increased it!
I was sitting up and on my feet for a short period the next day. Total time in the hospital was three days followed by four days in a rehab facility. The best part was the shower I was able to get before leaving the surgical hospital. The worst part was the morphine injector which is supposed to allow you to manually give a little extra if the pain gets too bad. Mine didn't work the first 24 hours after surgery due to a bad push-button! I will say that I'm not sure I really needed it because there was a constant drip of morphine anyway. When they fixed the pushbutton and I tried it, I was so spaced out that I never hit it again; didn't like the feeling but it's nice to know it will be there for you if you need it. Just make sure that someone asks that they verify that it is working for you before they hook you up. The pain is likely to be the sharp "gottcha" type when you don't expect it and you soon learn which motions cause it. To me, the motions necessary to sit up and get in and out of bed were the hardest during the first few days. Of course you'll have a walker to assist you and you just have to take it slow. Everything I found out before my surgery said that the key to a good recovery is the strict adherance to the rehab procedures. I think that a lot of progress is made in the first few weeks and then things begin to slow down a bit. Going up and down steps is a little painful at first so it is helpful if you can avoid that. You will probably have a visiting nurse and a PT person for a couple of weeks after surgery and they will give you some excellent tips.
I was able to drive in about four weeks (the surgeon said go ahead if I felt comfortabe) and beginning with the fifth week, drove to an outpatient rehab facility twice a week. Most of the excercises they give you will increase ROM and extension and you will continue to do them for the rest of your life.
Bottom line: it is major surgery but there have been so many success stories to have serious concerns about your outcome. The hardest part is being patient when things don't seem to progress as fast as you would like.
Good Luck!
Len
Updated Tue Dec 2 2008