For all those who are considering knee replacement - this is a worst case scenario. This is not a normal experience for patients who undergo joint replacement.

This was, however, my mother's experience with knee replacement. I am posting this Hub partly to educate people, and partly to call for suggestions from anyone who has any expertise or similar experiences.

Childhood to Early Adulthood

Mom was clearly born with some sort of deformity in her knee, though how severe it was, we'll never know now. She had her first knee surgery at age 14, called a Meniscectomy. This is the surgical removal of cartilage. The surgery took place in 1969, when knowledge and technology was far inferior to now. Mom thinks that this surgery was completely unnecessary and the reason she has absolutely zero cartilage in her knee.

1976, however, was the year that destroyed her knee. She was told she needed surgery again, and she had the Hauser surgery, which doctors now know is a barbaric surgery that is never done anymore. This is the simplest explanation I could find anywhere online. The surgeon removes the kneecap and disconnects it, then reattaches it.

Adulthood

From childhood to adulthood, Mom has had "a bad leg", which essentially means constant pain, deformity, a pronounced limp, not to mention disfiguring scars. Then, as if there weren't enough problems, when I was about 2 years old, I jumped on her leg and, as they found out later, tore a ligament in her knee. She had arthroscopic surgery in 1990, in which the surgeon found the torn ligament but chose not to repair it, for what reason I do not know.

Pre-Knee Replacement

Fall of 2006: Mom is a substitute teacher at an elementary school, and an obnoxious, misbehaving, nutso child moves the process along again. She reached out a hand to guide him back into line, and he twists around, knocking her to the floor, giving her a herniated disk in her lower back, and of course she lands on her bad knee. The pain worsens throughout her entire body, and she goes to an orthopedic surgeon, who recommends arthroplasty, or total knee replacement.

Mom has severe doubts. After every surgery she's ever had, her knee has not gotten better, but worse. But this seems like the solution of a lifetime of knee problems. Everyone advises her to have the surgery (when it comes to making complicated medical decisions, suddenly everyone seems to have a medical degree). The one person who DOES have a medical degree, however, also advised her to have the surgery. Mom warned him, over and over, about the unique situation of her knee, her deformity, the lack of cartilage, the torn ligament, as well as her varicose veins and herniated disk. He assured her, in what I considered a dismissive and arrogant way, that he could fix whatever he found in there.

Surgery and the Months Following

I'm sure it is needless to say that he didn't quite accomplish what he promised. After the surgery, in late June, 2007, she stayed in the hospital for about a week in the CPM, or Continuous Passive Motion machine, which bends and straightens the knee continuously. After that, she went home, and a home physical therapist came three times a week. She barely pushed Mom at all, which actually ended up being harmful in the long run, but we didn't know that at the time. She never attempted to manually bend or straighten Mom's knee. Her knee began to freeze in a half-bent, half-straight position.

At her 1-month post-op exam, the knee surgeon showed considerable alarm at her inability to straighten her knee. He informed her that she had to have a manipulation to straighten her knee or she would never walk again. This decision was not left up to her. She asked if she could try (real) physical therapy first, and he said that was not an option. Despite the fact that this appeared to be an emergency, the surgery was postponed by the doctor's scheduler. She had the surgery in mid-August.

Manipulations... Parts 1 and 2

When Mom came out from under anaesthesia, she found her knee in a fiberglass cast that stretched from just below her hips to just above her ankle. Again, no physical therapy was possible since, well, the fiberglass cast prevented all movement. She was in the cast for 2 weeks.

They would have taken off the cast later than two weeks, but there was a strange smell coming from inside the cast. Turns out she had what was called a tunnel infection, which is named for its appearance of a tunnel from the outside of the skin toward the inside. It was treated with two rounds of antibiotics (since the first round didn't work) and pronounced cured.

Finally, 2 months post-surgery, she began physical therapy. The physical therapists worked on bending and straightening her knee for over 3 months, and they were unsuccessful. Mom's knee was stuck in a half-bent, half-straight position. Back to the doctor she went. He said, rather nonchalantly, that she should probably have another manipulation if she ever wanted to bend her knee again.

So, in December 2007, Mom returned to the hospital for the doctor to try to manipulate her knee into bending. When she awoke, she discovered that the doctor had failed to get her knee to bend any more than the physical therapists had. He was "afraid to break something." Later, he said that what he was afraid to break was a thigh bone or the prosthesis. Much pain and many hospital bills later, she was in the same place as before the manipulation.

The Current State of Things

After the second manipulation, she continued to go to physical therapy for months, but made no progress. She asked her doctor several times if she should still go to physical therapy, and he shrugged his shoulders and said it couldn't hurt. His "best guess" was that there is scar tissue that has grown and is preventing her from bending.

As she continually asked him, at appointment after appointment, what was wrong, why she was in so much dreadful pain, why she was so immobile, what she could do to fix things, he continually gave no answers. In fact, his favorite response to her questions about her knee is "It is what it is."

Her final visit to physical therapy was in April of 2008, as the physical therapists confessed that she was making no progress and that they could not justify further PT visits to the insurance company. The doctor, at Mom's last appointment in August 2008, informed her finally that there was nothing else he could do.

Is that acceptable? Is that possible? There's really nothing else? I refuse to accept that. Is modern medicine really so primitive that they cannot figure out WHY she can't move her leg? Has anything like this ever happened to anyone else? We are desperate for answers that no one seems to have.

Mom got an appointment with the head orthopedic surgeon at Johns Hopkins Hospital. It wasn't exactly good news.

The doctor's favorite option is to fuse her knee: basically connect the bones so that her leg is completely straight. She would never be able to drive again and would walk with a wide gait, but the doctor believes it would take away most of her pain. Believes is the operative word: fusion is irreversible, and there is no guarantee that it really would remove the pain.

He believes that physical therapy would injure her more by putting strain on the knee and continuing to increase the swelling.

The final option is to redo the surgery: a total revision of the knee replacement. Of course, there is no guarantee that this would make her better; she could stay the same or even get worse. Because of the swelling and the fact that her knee is often hot to the touch, he has ordered a test to see if there is an infection within the knee.

Lo and behold, it turns out that she has a very large infection in her knee, which likely has been there since either the original surgery or the first manipulation. No one thought to order a test for infection until now, despite the intense pain, the swelling, the heat, and the fact that she had a tunnel infection on the outside of her knee early on in this process.

Since the infection is within the knee, she has to have a series of surgeries to correct the problem. Why? Why not just take strong antibiotics? Because blood does not flow through a titanium knee. The antibiotics could not get to the infection through the bloodstream. So, she must have a total revision anyway, which is a multi-step process. The FIRST surgery is to go in, remove the prosthetic knee, and pour antibiotic directly into the site, then close up the skin WITHOUT putting the knee back in. Then she will have an IV for about 6 weeks with antibiotics going through the bloodstream. During this time, the prosthesis will be cleaned and the infectious material removed from it. After the 6 weeks, she will have another surgery to have the knee put back in.

Hopefully that will be it, and she will begin physical therapy. However, there is a chance that all the infection will not have been removed, and they will have to do it all again.

And, after all this, there is the possibility that the infection will not prove removeable. Then the only option is to amputate the leg from the thigh downward.

Thank you for all your support, and I will continue to update you all on the progression of this ordeal.

Thank you, everyone, for your stories and kind words. Mom had her removal surgery in December of 2008 and the total knee revision surgery in March of 2009. In terms of the infection, things went well.

The Good News: The infection was removed, and she began intensive, 3-times-a-week physical therapy. The pain was severely lessened once the infection was gone. And she was approved for disability benefits from Social Security.

The Bad News: However, there was so much scar tissue from the original surgery and 2 manipulations that the revision doctor couldn't remove it all without endangering the life of the knee. The scar tissue proved quite problematic. Despite the constant physical therapy, she cannot and will never be able to fully bend or straighten her knee. She has a bit more range of motion than after the first manipulation, but nowhere near what she had before the first knee replacement. She will use a cane for the rest of her life, and the constant twisting of her body to walk abnormally has caused other problems in her back and hips.

Now, I don't want to end on a bad note. The pain is better, and she has more hope of a semi-normal life now that the infection is gone. It's true that she wishes she had never had the original knee replacement, but we have to work with what we have now, and she has even gone back to work part-time. Again, thank you to everyone for your support, and I wish everyone who has gone through similar experiences the best of luck.