Josephine, your explanation is the BEST I have ever heard to understand what goes on in your knees when arthritis starts!!
In my case, I had some torn cartilage about a year ago and had arthroscopic surgery to, as that doctor said, "clean things up." Like you, I had knee pain that would come and go, but it wasn't nearly as severe as what you described. After that surgery, I never got to where I could walk again without a limp. I had tremendous swelling for months and at one point got to where I could barely stand or put any pressure on that right leg when standing or walking. I ended up back at the doctor who had another MRI done. This was several months after the arthroscopic surgery. During those months, I had talked to his nurse on the phone and he had prescribed Celebrex and some physical therapy. It did improve the situation enough that I could walk without crutches, but my knee still hurt, I limped slightly, and things were not right. This MRI several months after surgery floored both the doctor and me because it showed I had suddenly lost ALL of the cartilage I had on the inside of my knee and the radiologist indicated the start of osteo necrosis - dead bone. All this doctor could tell me was that he didn't know why it happened, parts of the bone had died, and it would get worse and I would eventually need a TKR in 1-5 years depending on when I thought the pain was bad enough. I went home in shock and disbelief that such a thing could happen to me with a "simple" surgery like arthroscopic clean-up of a joint. I got on the internet and what I read about osteo necrosis scared me even more!! Cases were described there (especially at at web site for osteo necrosis support) that made me think it was possible that my bones could continue to die for no reason at all. And, not only might my knee be impacted but also hips, shoulder, and possibly ankles. By this time I was scared to death and thought I would be crippled for the rest of my life!!!
It was so horrible. I made an appointment with that doctor again to tell him what I had learned and basically to give him a "tune-up" for really poor bedside manner. He should have been able to tell me things like YOU did that would reassure me, not scare the poop out of me!! I told him he left me very scared. He was VERY apologetic and we parted on friendly terms with me thinking that he was just not a specialist in older joints....more of a young kids sports doctor...and not the right one for me.
I went to another doctor I knew of in town who was good and was told basically the same thing, but that it was possible I could have minimal surgery to implant a device called Ortho-Glide that would only cover part of the joint and that it might delay a full replacement. I was still not comfortable with that diagnosis and wanted yet another opinion before I did anything. In the meantime, the pain dissapated quite a lot by September, but I was still left with a limp and I could not go for very long at anything without pain starting. I was a mess at 59 years old!!
I then went to a practice recommended by a nurse friend of mine (see how IMPORTANT nurses are to us!!) and finally found the right place. Each doctor there was so specialized that they only dealt with part of the degenerative process. The first doctor I saw did everything UP TO a TKR. He told me because of the start of the bone loss, that I would continue to have problems with arthritis, but only in that knee. The other one looked fine. He also could not explain exactly why I experienced the sudden loss of the cartilage, but it could be related to the extended periods of swelling after that first surgery which resulted in poor blood circulation to the area where the bone died. He said the OrthoGlide was NOT an option for me because I had bone loss on the femur which would not be touched with the insertion of that device. It would be a partial or TKR or nothing. We did try some Supartz injections, which actually made it a little better for a while. Mostly that was for my benefit to calm down, make it through the holidays, and get my mind in place for a PKR or TKR. At that point, he turned me over to a different doctor in the practice who ONLY does the knee replacements. As you so often recommend, he does many, many of them each year. This last doctor viewed my latest xrays and carefully went over the films with me...something neither of the first two doctors did (they just talked from the radiologist's written report). He showed me the actual necrosis (very small dot) and where a bone spur was starting to develop on the outside of the joint. At my first meeting with this doctor in January, I put myself in his hands as to whether I would need a PKR or TKR once he got inside and could see how things looked. The surgery was scheduled for February 29th and the rest is history.
He said once he got in there it was VERY obvious that I needed the full replacement because there was a LOT of arthritis behind the kneecap that did not show on either the xrays or MIRs. From the first day when I stood on my new joint, I knew it was finally "right" again....even if it did hurt, it was a "good" kind of pain that you just knew would eventually work itself out. This is why I am so strong about finding the right doctor. The first two minimized what I was going through and even allowed me to get to the point of thinking I might never walk again. That was NEVER the case and, although they probably knew that, it didn't come across to me! I am so happy I found the right people to work with - my GOOD surgeon and you on this web site!!!
I apologize for the length of this post, but I felt I had to give you some details on my case so you could appreciate the depth of my heartfelt thanks for your explanation above. Had I seen that or heard it put that way after my first "simple" surgery, I would not have spent months worrying about how I would get through the rest of my life in a wheelchair. God bless you for being here for everyone, Josephine!!! You are truly an angel in my eyes. Please never stop being there for people!!! .....Jamie
United States
