Caroline,
Congenital absence of the patellae is very rare. It is usually associated with a syndrome such as Nail-Patella Syndrome, but, in extremely rare cases, it is an isolated anomaly. But, as I'm sure you have found out down through the years, you don't really want to be an interesting case around doctors. They all love to examine your case, but since you are so unique, no one really wants to treat you. There is just not a whole lot of information out there to go on.
I'm not sure why you say you are too old to have a total knee replacement done? I have seen them put in 90 year olds. So, don't let just your age dissuade you from doing it, if it is right thing to do.
Of course, no one is going to have experience putting a TKR in a patient such as yourself. However, sometimes patients will have to have a patella removed due to trauma or infection, and then the patient needs a replacement later in life. Though it is a little more difficult to do, it is definitely not impossible.
Since you already have bone-on-bone degeneration, the knee will never really get better. You will have good and bad days, of course. A TKR would most likely offer you the best and most predictable outcome.
However, you will need to see a total joint specialist, which is well versed in complex cases. These are usually found at institutions such as the Mayo Clinic, Johns Hopkins University, etc. Many times, in cases such as yours, these institutions are eager to provide you with care, as they pride themselves on being the ultimate tertiary centers for referrals for unique and rare disorders. As such, they have the most experience dealing with your type of case.
It might be in your interest to contact the total joint service at a number of these places, explaining your situation, and inquire as to whether they can take care of a case like yours. And, many times, these institutions can provide care at little or no cost, if the patient needs assistance.
As to bracing, yes it is possible to brace the knee, for instability problems. But, bracing will only deal with the side to side (varus/valgus) or front to back (anterior/posterior) type of motions. It really won't help with giving way. Giving way, or bending when you least expect it, is due to either weak quadriceps muscles (the muscles in front of the thigh) or due to pain in the joint. Sometimes, if there is a sudden, sharp, intense pain in a knee joint, it will cause an inhibition of the quad muscles. This causes them to not contract, thus they can no longer keep the lower extremity stable, and the knee flexes (bends) suddenly, and the patient can actually fall down.
However, if the knee feels wobbly, or like it is moving sideways or it is sliding forward, then bracing may help. Bracing can also give some general support to the knee, which increases the patient's confidence.
Braces usually cannot be worn for more than a few hours a day. Some patients can build a tolerance to them, and are able to wear them for longer. There are also many types of knee braces, for the different conditions to be treated.
You probably do not need the 3 to 5 thousand dollar athletic ACL braces, which are custom made, carbon fiber, individual design jobs. There are many, which can be purchased for between 50 to 300 dollars, which do very good jobs for low demand patients.
The key to bracing is finding one that is comfortable and fits you well.
If you want mostly generalized support, with a little side to side (called varus-valgus) support, then a neoprene sleeve, with uprights is about all you would need. These can even be purchased over the counter at most large athletic stores or pharmacies. There are several types. Most are just pulled on, but some have wrap around straps. Some also have a cutout for the patella, but you probably do not need this feature. There are ones that are made out of some new material that supposedly breaths better, but some patients still prefer the neoprene, because it does provide the warmth that a lot of patients are seeking.
If you need more support, then one of the off the shelf braces, made by one of the large brace making companies, is probably better. These companies also make braces called OA braces or Unloader braces, which are designed for patients who have knees that bend inward or outward (due to uneven cartilage wear). These braces can actually push the knee over to make it straighter (while the brace is worn). This decreases the pain, because the knee now articulates on the side of the knee which has more cartilage.
But, these off the shelf braces can also be worn by patients who do not have the varus or valgus deformity, but just need some extra support.
You might want to look at the websites for some of the big brace makers, to view the different types of braces available. Some of the brace makers are: Don-Joy, Townsend, Breg, Mueller, McDavid, Bauerfeind, Ace, and many, many more. I am not advocating any one brand over another.
(I personally use one of Don-Joyâs off the shelf, OA braces. It only has one upright hinge on the lateral (outside) of the knee and is made for very light weight materials. Since it only has one hinge, my other knee does not hit the brace. It is also very comfortable, and is made in such a way as not to slide down. This is kind of important in those of us who are not quite as athletically built as the pro athletes. But, again, every leg is different, so you have to find one that fits you. I have had to have my right knee replaced several times, after it was destroyed by an infection. So, I have a little wobble in the knee. I wear my brace if I go walking in unfamiliar places. And I use a cane, not that I really need it, but to fend off other people so they do not bump into me, possibly knocking me down.)
It is very important that the brace fits well, because if it does not, the patient won't use it. And then it becomes an expensive, dust collector. So, if you do decide to get a brace, be sure that you can try it out for several days before having to purchase it. You want to make sure you are going to wear it before buying it.
As to treating the pain in other ways, Iâm sure you have probably tried just about everything. The medicines the doctors have prescribed and the joint supplements (chondroitin sulfate, hyaluronic acid, and glucosamine). Unfortunately, medicine just has not yet found a way to get the cartilage to reform on the ends of the bones in the joints. We can replace small, discrete defects, but generalized loss still doesnât have a good solution.
Iâm sorry this post was so long. If I have not answered the question, which you really wanted answered, just let me know, and Iâll try to be more focused. Iâm sorry you are having such a hard time.
Wishing you and your family the best. Good luck.