The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: Kimberly 77 on April 13, 2011, 03:02:08 PM

Title: Update and some questions about replacement
Post by: Kimberly 77 on April 13, 2011, 03:02:08 PM
Seen my OS yesterday, he didn't do much just gave me another cortizone shot. He said come back in six weeks and we will do hylagan shots and if no relief from them, we will have to think about replacing. So here I am today swelled up like a baloon from the shot and hurting much more. I have had a cortizone shot before and the Synvisc One before and they don't work for me so I am sure replacement is in my near future. I am scared to death of this surgery. I have had many surgeries so its not because I will be having surgery it is because this is my one leg and I am so scared to start putting metal in it already at 33 years old. (right leg amputee, left knee problems) I wanted to hear from others who have had replacements and try and be prepared for what to expect after surgery and also would like to know any complications you may have had after surgery. Also how hard is the recovery? How long were you non weight bearing on your leg? Guess I should say how long before you could bare weight on just the operated leg? Because I will have to bare all my weight on my one knee. Just trying to get a idea of how long I will be unable to do things for myself. Advice is greatly appreciated. Thanks! ???
Title: Re: Update and some questions about replacement
Post by: Kimberly 77 on April 14, 2011, 03:03:55 PM
Anyone have advice about reovery after replacement? Guess I will also post this in the total knee replacement forum. Thanks!
Title: Re: Update and some questions about replacement
Post by: Lottiefox on April 14, 2011, 03:43:20 PM
Hi Kim

Well, it sounds like you have a bit of progress although its a shame you are having to go through all the post cortisone flare up again. I would definitely post this down in the TKR forum. From my experience of relatives who have had TKR they seemed to be encouraged to be up and on the leg as soon as posible after the op - not like microfracture with WB restrictions or stuff. They used cructhes to help, but certainly the transition to trying to stand normally and walk on the leg was FAST. (painful, but fast!) I am not sure how the fact you have only the only leg to bear weight will affect you but I know you're encouraged to get up and start moving it as asap. One thing I could say is that prior to any replacement parts my OS has said its pretty important to work on your ROM and stuff so you can try and get that back after the TKR. I know you've had some scar tissue issues? You might want to speak to your doctor about these and what the plan would be after a TKR to minimise the chance of it coming back anf you being left with a stiff knee. Its certainly not a small op, but I've seen people with fabulous results and to be honest, you're really suffering at the moment so its a chance that may be worth taking - with the right post op input.
Good luck,

Lottie x :)
Title: Re: Update and some questions about replacement
Post by: Kimberly 77 on April 14, 2011, 05:11:08 PM
Thank You again Lottie, you always have good advice! It is good to hear that you know people who have done great with thier replacement. I have been in so much pain for a long time and I guess I am just ready for something to finally work. Yes, I am having some range of motion issues. My PT felt it was due to scar tissue and so did I because you can feel the lumps under the skin, but OS thinks its more a mechanical issue. I was a about 102 flexion, but had a cortizone shot and flared things up a bit so now I am literally only about 85 tops, haven't been measured as pt is over now. I have a extension lag of -12 and staying firm at that. I haven't had a straight or fully bent knee in over a year now. I have done the work too it just won't do it. My knee cap completely locks up on me whenI try to fully straighten and then I cannot bend until I work it back in place. It will pop loudly each time this happens. It does it bad when walking if I accidently extend to far. Another words walking on a really bent knee.
Title: Re: Update and some questions about replacement
Post by: knee always hurts on April 14, 2011, 06:42:03 PM
I've never understood why the idea of a younger person getting a joint replacement is so taboo. If there is truly no other option for them to lead a decent quality of life, then it should be an option that is considered. It's a good thing that your OS is willing to do it if you ultimately need it. Certainly, that decision is yours to make, but the unfortunately reality is that there aren't many good treatments for arthritis other than PT and pain killers. If that isn't working for you, then a knee replacement is probably going to produce a good result. I'm starting to wonder about what options are available for me. I've been on and off crutches for the last 9 months and it is starting to drive me crazy. I don't know how you've done it for so many years. If there was nothing else, though, even at age 26 I would be begging for a replacement.

The good news is that over 90% of people get good to excellent results from a knee placement. Of course, that is after the first surgery, and there is little doubt that you'll need a revision at some point. Revisions have a significantly lower success rate. As far as I understand it, almost any surgery can have severe complications, and this is no exception. The prosthesis itself can serve as a breeding ground for infections, and this of course can be a serious problem. But if you get the replacement done at a good hospital you will likely not have any problems. I don't know where you live, but my uncle is getting a hip replacement done at New England Baptist Hospital this weekend. He told me that they have a much lower rate of complications than most hospitals. Consider traveling to a research hospital if you can. My aunt has had a bilateral knee replacement for over 5 years and I don't hear her complaining about pain. There is physical therapy involved, to get back range of motion for example. But as Lottie said, you are up on your feet within a couple of days for sure assuming everything goes well.

One other thing I am wondering, you've mentioned that you are a hip disarticulate, correct? Why does this preclude you from any possibility of a prosthesis? On this site there is a story of a woman who had her entire leg amputated as a child, and is around your age and is now fitted with an advanced prosthesis:

I hope you don't mind me inquiring about it, but you have been told that this is impossible for you? Why is that?

I think this is the website of the company that makes those prosthetics:
Title: Re: Update and some questions about replacement
Post by: Kimberly 77 on April 14, 2011, 08:27:52 PM
My OS won't prescribe pain killers, he gave me one perscription since surgery of hydrocodone just 20 pills. He said he don't want me addicted. My GP did prescribe a mild pain killer called tramadol, but they don't work any better than a tylenol 3. I rarely take anything because ibprofen is out because I have really high blood pressure problems so GP suggested not taking them. (heredity, father died from it) Pt hasn't worked for me either and shots don't . I am like you pretty lost at what to do now, so maybe replacement isn't a bad idea. I guess I should clarify I am a hip disarticulate basically, I have a very very small stump, it is mostly bone covered with graphed skin. I have had 6 different legs made and found all of them impossible to wear. My graphed skin rubs off in the socket and leaves big sores that won't heal because of the graphs, also very little muscle if any at all so have to use my hip. I was told if I had the rest of my tiny stump removed I would have a greater chance of wearing a leg. But, when you have had as many surgeries as me (34) it is hard to jump into something so tramatic, one reason why this replacement thing is bothering me so much. I always dismissed the damage the walking and crutches were doing to me, you just get use to hurting alot and I always ignored the pains. But, then one day my knee gave and I have since realized just how much I have put my body through. Call it being stubborn or what ever but I never have had and still don't have a handicap sticker for my car, I save those places for others worse off than me. I have walked every amusement park never used a wheelchair, hopped everywhere around house and pretty much have just beaten my whole body down doing it. Hindsight is always 20/20, wish I could change some of the ways I chose to live my life. I wanted to be free of my disability so I ignored it and went on like it wasn't there. I have lots of regret now!
Title: Re: Update and some questions about replacement
Post by: knee always hurts on April 14, 2011, 08:54:38 PM
Don't be too hard on yourself, you know? That's the funny thing about cartilage. If you had done less, it might have been weaker for lack of motion, and you might have deteriorated even faster. You just don't know. At least you were able to live some semblance of a life. To be honest, I haven't gone out too much since all of this has happened. I've been sort of conquered by the pain. But what if it isn't going to end? Maybe I just need to accept it, at least for now, and live my life.

I can see how that stump could be a problem. I don't know, if I was in your situation I might want to try it and see if I could walk again. On the other hand, I dread the idea of any surgery, so I can't blame you for not wanting to go through with it. I just have so many fond memories of when I was able to walk without pain. I want to be able to walk so badly, but it will be a good time yet to see if anything can be done for me. I can't imagine never walking again, but sometimes you just have to accept what has befallen you and move on, I suppose.
Title: Re: Update and some questions about replacement
Post by: Kimberly 77 on April 14, 2011, 09:33:49 PM
Are you only 26? Not fair to be so laid up at such a young and wonderful age isn't it! Pain is a very hard thing to live with and you can't fault yourself for that. I get down daily anymore and I like you try and be positive but it is hard when the pain is a constant reminder. I don't think there is a person in this world who wouldn't want to be better and want to have a answer to thier pain. There was a Harlem Globe Trotter who came to see me when I was younger and he said one little phrase to me that has stuck all through my life and that is "Keep the Faith" I don't know why but it has always inspired me. Just have to keep on pushing and push your OS for more answers and I am sure it will look up soon for both of us! Chin up and maybe try to get out a little, even if your in a wheelchair when you do it, I promise being around good people and good fun and being able to let loose a little really helps.
Title: Re: Update and some questions about replacement
Post by: Lottiefox on April 14, 2011, 10:06:11 PM

Don't be hard on yourself. You live your life, and you sound live you live it well. I am in awe of what you've been through with losing your leg and dealing with it - you sound SO strong. I can imagine that the thought of another major surgery is really not what you want to consider, but the right replacement could be exactly what you need. The extension lag is frustrating - and could well be due to scar tissue which to me, IS a mechanical block to the joint fully extending. But there may also be tracking issues or something else going on because of the fact you've used that leg and knee so much. I would agree with kneealwayshurts to say find a GOOD hospital specialised in complex reconstruction surgery. This is not a run of the mill TKR and you need an expert in working with both possible scar tissue and your past medical history and mobility concerns.

I don't think you'd have to got where you are now unless you have a real fighting spirit. Regret doesn't help you move on. I trashed my kneecaps through a summer of extreme fitness training and running. Stupid, as I knew I had cranky knees. This is nothing like your situation but I spent many months crying about wanting to turn the clock back and never done the daft regime. I can't. Since I started looking forwards things have got better. You've worked hard to be YOU, with one leg, two legs, whatever. hang in there. Do you have the scope to seek out a proper TKR person? Not criticising but your current OS doesn't sound.....wonderful if you get my drift.  :-\ :P

Take care

Lottie x
Title: Re: Update and some questions about replacement
Post by: knee always hurts on April 14, 2011, 10:56:15 PM
"...I spent many months crying about wanting to turn the clock back and never done the daft regime. I can't."

Yeah, that's it basically. I took a pair of perfectly good knees and hosed them completely! I still can't believe what I did. But here I am. When I was younger, I had this fanciful notion that if I did everything right, I could avoid surgery for my whole life. Well, I might have been correct about that, but I didn't do everything right! Pfah. Oh well. I used to cringe at the thought of some of these procedures, and was unable to even look at pictures of them. Now, I've looked at the images and videos of the ACI procedure and it's looking pretty good to me! As long as I don't need an osteotomy or muscle advancement (who knows, but I would probably consent to whatever the doctor wanted to do at that point), it doesn't look all that invasive, except for that nasty incision all the way down the knee. Too bad they can't do it arthroscopically!

I would start by looking at a list like this (If you're in the US):

Find a hospital not too far away, and investigate its reputation for knee replacements. At least if I end up getting ACI, I'll have one of the best doctors (Dr. Minas) doing it.
Title: Re: Update and some questions about replacement
Post by: Kimberly 77 on April 15, 2011, 04:41:02 PM
I really appreciate all of your alls advice! Knee always hurt, I will check out the link you posted. I am in the US, Arkansas actually and there isn't too many big time OS's around my area. I guess Little Rock or Tulsa Ok would be the closet bigger cities around me, both are about a 4 hour drive so not too bad. I do like my new OS though, maybe because I am comparing him to my first os and he is much better. The first guy never answered a question, never had a appoint. last longer than 5 mins ect. This guy comes in and sits down and really talks with me, haven't had a appoint. yet that he didn't spend atleast 20 mins with me. He seems to care and is very honest with me about his fears of operating on my only leg, I really appreciate his honesty. I was referred to him by my GP, which I have known for years and trust. This first Dr. literally didn't know who I was before my first surgery. I was there for a follow up after he did Synvisc shots, and he began by saying there was nothing more he could do for me and I needed to research and find a specialist. So I questioned why I had no other options and he said well we did the scope and the shots and it isn't working and I stopped him and said uh, you never scoped my knee. He looked puzzled and said have we not scoped you yet and I said no, and he laughed and said sorry was thinking of another patient. So when I went to see this new guy, it was just a completely better experience, seems to care and is very reputable. The only fret I have about him is he is booked way out so getting a appointment can take forever and then when you come to your appointment on time you can wait for up to 2 hours in the waiting room. On Tues. my appoint. was 12:30, I got back in to see him right at 2:00. I had my 3 year old daughter with me and she was very grumpy by the time I left. I do however feel for such a big surgery a 2nd opinion wouldn't hurt. He does anoy me with the whole no pain pills thing, I haven't asked for anymore because I know what he will say. I have researched my area before seeing him and didn't really find anyone who stood out amoung the rest but I didn't go farther than 50 miles from me.
Title: Re: Update and some questions about replacement
Post by: knee always hurts on April 15, 2011, 07:53:59 PM
This hospital has a reputation in orthopedics if you don't mind going to St. Louis: