Health Issues :-(

Well, I just got back from an appointment with my knee surgeon. I'm sure some of you are aware that I have horrible problems with my knees. Well, the situation just got a little scary. Both of my knees are that of an 80-year-old. I have few options now. I've been told that if I have a knee replacement now, I may end up wheelchair bound or with both legs amputated from (I'm assuming) from (including) the knee down, because once the replacement has worn out, it erodes the bone, and I may not have enough bone left to work with afterward.  I have severe osteoarthritis in both knees, so even if I get the knee replacement now, my bone may reject the replacement, and then I could be back to square one. Apparently, the knee cap in my right knee has moved and is positioned far lower than it should be. Another lovely thing to add to the list of what's wrong with my legs. Another option is to have the knee joint completely removed, and then the bone in my lower leg fused to the upper leg bone, which would leave me with legs immovable and stiff as a board. So the surgeon is sending me for an MRI on my right knee to get a better view, and will be doing some research into searching for a doctor that will do a knee replacement on someone my age. So if I go for a knee replacement now, I may end up totally screwed by the time I am 30-35. I have to decide whether to gamble with this; if I tell him I want him to go ahead and operate, I risk losing most of my legs or becoming wheelchair bound in 10-15 years or so. Yes, medical science may have improved greatly by then, but it IS a gamble nonetheless.  And it's not like he doesn't know what he is talking about; he has a great reputation for being a wonderful orthopedic surgeon. I appreciate the fact that he was willing to be so frank. But now I am scared, sad, and somewhat bitter that at 23, I have to decide whether I want to chance losing my legs or becoming wheelchair bound in 10-15 years. I shouldn't have to make this decision. I shouldn't be a cripple (no offense meant) at 23. I have choices to make now, and NONE of them are good. A lot of my joints are following this path, and there is nothing I can do because there is no cure for what I have. I am beyond physical therapy as far as my knees are concerned, and the painkillers I am on cover the pain only so much. I'm on anti-inflammatory medication, but that doesn't stop my feet and knees from swelling horribly every night. God, I feel so stuck between a rock and a hard place here.  :\\\'(  :\\\'(  :\\\'(

I just read this and cannot imagine myself in your shoes.  I know someone with similar problems and the pain can be horrendous. I don't know what else to say, but will be thinking of you, Bluewillow.  I hope the best possible decisions will be made on your behalf.

*hugs* Bluewillow- what a crap situation.   I'm thinking of you.

   I don't know what to say either.  I can't even imagine how horrible it must be to have to make those decisions.  You'll just have to do what seems best/least bad to you.   :\\\'(

Hug hug hug hug!

first of all: You have the capacity to make this decision. You are empowered to make it. Advocate for yourself and find experts who want to inform YOU and advocate for YOU. Take the time and be persistent, be clear with your friends, family and coworkers about your needs and what to expect, and ask for help! Your thoughtful, detailed post shows you are on the right track, that the decision parameters are clearly defined for you.

Look into the research for the future and inform yourself. PubMed, university medical libraries (and librarians!) and other resources can help you inform yourself and make this projection and risk assessment responsibly and accurately.

Good luck to you and please let me know if I can be of any assistance!

Hug hug hug hug!

Look into the research for the future and inform yourself. PubMed, university medical libraries (and librarians!) and other resources can help you inform yourself and make this projection and risk assessment responsibly and accurately.

In addition, find an internet forum(s) of people with similar conditions, who have the experience of living with something every day that doctors don't have.  I have had extremely positive experiences from forums on medical issues; in some cases, they provided better help than doctors, and if I had relied on doctors alone, the outcome would have been much worse.

Hugs

I feel for you.  A lot of my family have this and the other diseases that often travel with it.

I don't have any advice, except that counselling is a very good idea.   And I hope that your pain can be controlled without too much disruption to your state of mind and life.  

Thank you all so much for your replies. I will do my best to be as informed and educated as I can about my options and the possible outcomes as I can. Thankfully the surgeon seems to be really good, and he's got a great reputation, so at least that I can rely on. It's just a very, very difficult thing to have to think about, let alone decide. Amputation would obviously be the worst scenario, but the possibility of it happening, however very slim, scares the daylights out of me. Sometimes I think, if my joints (especially my knees, obviously) are this horrible at 23, how are they going to be in my 30's? What about in twenty years from now, and so on? It's a horrible thing to think about. My husband is so supportive through all this, and I know he will be through anything that ends up happening, and I am so glad to have him there.....but in a sense, I feel alone in dealing with this, I guess purely because only I can feel the pain, fear, and anxiety at wondering what the hell my body's going to do next.  Anyway, thank you all so much for your support, I really need that right now.

Hugs to you Bluewillow!  I don't envy you in your decisions. 

If it is any consolation, not that any consolation I can offer is worth very much to your present issues, I really feel for you..  my husband is in medical research and one of his applications is autoimmune diseases.  There is some very good research happening and that, along with the advances in joint and bone technologies, in 10-15 years, it could be a quite different scenario than it is now for you. 

Keep fighting and know that whatever decision you make, there is support here.     

*hugs* Bluewillow.  I am very sorry to hear of your troubles.  I will keep you in my prayers. 

Oh Bluewillow... i'm really sorry to hear this.   

I'm very sorry to hear this.  I can't imagine the weight of this decision you will have to make.  I think everyone has made some really good suggestions to you.

You'll be in my prayers.

The thing I try to remind myself of is that there is a slim chance of amputation. If I have too little bone left to work with once the first replacement has worn out, that will more likely than not end up in my being wheelchair bound, having that fusion thing done, or, if there are complications and all, then amputation. It freaked me out enough already just thinking of having a metal joint; now I have to think about what may happen when that joint becomes worn and starts coming loose. If I have enough bone left, they can do another, though it will be second rate. But I am also 23 years old; I will have multiple replacements in my lifetime, more likely than not. That leaves me with a great fear that at some point it will come down to being in a wheelchair  permanently, or at worst, having to have amputation done. Granted, medical science is ever improving. So by the time my first replacement wears out, there may very well be something to help me. What's happening to my joints scares the hell out of me, and I would rather not have to make this decision. But I would also rather not give in and leave my legs to continue to grow worse and worse, while my life suffers, and I am left extremely limited in every sense. I think I will end up going for the knee replacement, but I am not sure. It will take so much thought. Thank you all for your support. I can only hope that with plenty of research on my part and on the part of my surgeon, we will come to the conclusion of what will be best. Still a major drag.  :\\\'(