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I Have A Question Pertaining To My Knee...

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Hi Gaelic: I was born without knee caps...From what I understand and possibly the way I have walked, my right leg is far stronger than my left...Possibly the fall I took as a child where a large bump on the left side of my left knee, helped with this situation...But, either way, it is who I am and must have been created to be...Because of this I have found that age has been a real challenge...All of the cartilage in my left knee is gone...I mean really gone...I can no longer place weight on it or else the pain can be so bad that I don't have words for it...Other times and out of the blue it will be OK...Just about act normal...But, this is a short time I speak about...I could go on about the problems and what I have faced and fill a page...But it is life...Now for my question....

I live with this...The doctors wanted to do a knee replacement already years ago and my family wouldn't let me have it...Now I am too old for it and still face the same problem that I had then...That being I also have bad circulation in my knees...I have been able to keep this under control by wearing expensive compression stockings for the last maybe 20 years...I wear the knee high...Seeing I am athletic and pretty darn confident in myself and who I am, this has never been a drawback...They are skin colored and are kind of a part of me...As you can see I am somewhat self conscious and don't accept age...But, what I ask is am I safe and assured that my left knee will hold up for the years ahead?...I mean will it wear out and turn on me?...This scares the devil out of me with missing so much inside of my knee...

I have every convenience that is humanly possible...I have even made the concession (and it wasn't easy to do) use one of those neat rolling push carts with a basket when we go out...I don't do it all the time, but I fear someone knocking me down....With my bad back, this is also possible...At home, I use nothing...I am confident, but far from what I was or ever hope that I will be again..Actually I suck as I have to watch my step and placement of my knee, but again I am going to do it my way.......All of our house is safeguarded against any problem...I don't even use a cane...

I have been to the Orthopedist many times...When my husband had his last hip replacement, my son and I again asked him about a knee replacement for me...Both he and the Therapist hesitated with this...This was enough for my family to hear...Yet, I wonder, is there some kind of brace that I could wear to keep this knee straight...It does swell, but since I have lost weight it is much better...I have also found that losing weight and lowering your blood pressure is one of the best medicines you can buy....My question again, could this knee kind of give and break?....Sounds stupid, but you are so knowledgeable and I have been going to ask you this for months...Thanks....

Caroline
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replied August 30th, 2011
Especially eHealthy
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-Joy’s 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, I’m 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 doesn’t have a good solution.


I’m sorry this post was so long. If I have not answered the question, which you really wanted answered, just let me know, and I’ll try to be more focused. I’m sorry you are having such a hard time.

Wishing you and your family the best. Good luck.
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Users who thank Gaelic for this post: CarolineEF 

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replied August 30th, 2011
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Dear Gaelic:

I can't thank you enough for all the information you gave me in your post...I learned more about me and my health from you, then I have ever known before....I am going to try to respond paragraph by paragraph...Believe me, I value this letter...It is already a part of my stored documents...

Yes, I am rare...From what I have gathered it is a hereditary happening....When I was in my 30's was when they found out that I was an interesting case...This was after I had my left knee drained for the second time...I believe they put cortisone in it each time...After that time they said they could not do it anymore as it would cause problems inside my knee...This was when I had all the prodding done by doctors...They took X-rays and wanted to add a piece of "something" to take the place of what was missing...When they wanted to send me on to another group for some sort of examination, we said no...You see, I had suffered all of my life with my knee giving in and down I would go and with three young children, there was no ways I wanted the unknown...I have no regrets....At least it is me and not a child...

About the knee replacement...I am not young and know I have a herniated disc.....Add the dimpled back Scoliosis and you have one sore older-younger woman that can and does have a hard time getting out of bed in the morning...This is when it hurts..I kind of get out of bed in spurts...Then after I have been to the bathroom, it is back to bed to get my spine in order...I do this by laying flat on the bed...As I lay there I swear I can feel each disc go into place...And I laugh as I write this, as I am really darn old when you think of it...I have a knee that creeks when I turn over at night and a back that is a mess and I dare write about it...Now add the circulation from the knees down and it adds to the chances of a problem...My family is convinced that if I had surgery, that the surgery would not take and my leg would not heal...They think that with the circulation as it is that I would end up without a knee and be in a wheelchair the rest of my life...My familly all agrees, so I lose....

With our insurance I am able to travel to anywhere for surgery...Both Mayo or John Hopkins University are no problem...It's me who is the problem...I fear being a guinea pig and whether I could endure the pains of life if it does not take..

I have spent the last hour looking into Braces...I did go to DonJoy and kind of picked out the Aircast Knee Cryo/Cuff w/Cooler or else the Donjoy Deluxe Elastic Knee Sleeve....This will be next....

Like many older people, I think I live in fear...I could probably go without anything when we go out, but I worry...My left leg is fragile...If I fell it could be real serious...As far as medication, all I will take is a Tylenol type off brand at Walgreens...Years ago I found out both the pros and cons of medication and pain...Now I choose the later...Nothing...I figure this way, it's gonna hurt either way so why not keep a level head...

Thank you again for the time and energy that you have taken in doing your post....I will always be indebted to you....You told me things that doctors were too busy to talk about...This, too, is another story.....I have already read it twice...My husband has once...It will be my bible of facts pertaining to this oddity in life that I have been born with....Before you came I thought I knew some things about hip, knee replacement, shoulders, and broken feet...These are all the limb surgeries in our family...Then you came along with your wisdom of the ages and I am back in grade school...You are a blessing to the forum...

My best to you and yours....Stay safe...Take care.....

Caroline
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replied November 12th, 2012
Caroline,

Hi there! You don't indicate how old you are, but the average age range for Total Knee Replacement is from early 50s to early 70s. I am in my mid 50s and have just had BOTH my knees replaced within a year of each other due to severe osteoarthritis which caused the cartilage to completely wear away and my knees were bone on bone. I have one of the TOP Orthopedic surgeons in the U.S. and he did an incredible job replacing both knees (I did the rest in rehab!) The recovery/rehab time can vary patient to patient, but since I'm a fast healer, I was walking normally and pain free within 3 months of my right TKR in 2011, and within a month of my left TKR this past March! (I even walked on the walker 200 FEET the same DAY OF SURGERY when my surgeon replaced my left knee back in March!)

Let me know both how old you are and and where you live. If you live in the NYC area, you should go to the Hospital for Special Surgery as they are the EXPERTS in all problems ORTHOPEDIC!!! The Mets and Yankees team orthopedic surgeons are on staff at HSS, as is my Orthopedic surgeon. (Though, my Ortho surgeon is Chief of Orthopedic Surgery and Joint Replacement at Sound Shore Medical Center in New Rochelle, NY, mainly, he DOES do some replacements at Special Surgery.)

Let me know if you are interested and I can send you a private email with his name.

As for your family and these other surgeons not wanting you to have the surgery - I think they just don't know how wonderful you would feel if you had it done, and it may not be these particular surgeons' area of expertise that you are consulting.

You need someone who has been doing knee replacement surgery for AT LEAST TEN OR MORE YEARS and does AT LEAST 200 PER YEAR! That is usually the criteria for finding a top Orthopedic surgeon who specializes in knee and hip replacement surgery.

Hope to hear from you soon.

Bionicknees2012 (Carol)
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replied November 12th, 2012
Caroline,

Hi there! You don't indicate how old you are, but the average age range for Total Knee Replacement is from early 50s to early 70s. I am in my mid 50s and have just had BOTH my knees replaced within a year of each other due to severe osteoarthritis which caused the cartilage to completely wear away and my knees were bone on bone. I have one of the TOP Orthopedic surgeons in the U.S. and he did an incredible job replacing both knees (I did the rest in rehab!) The recovery/rehab time can vary patient to patient, but since I'm a fast healer, I was walking normally and pain free within 3 months of my right TKR in 2011, and within a month of my left TKR this past March! (I even walked on the walker 200 FEET the same DAY OF SURGERY when my surgeon replaced my left knee back in March!)

Let me know both how old you are and and where you live. If you live in the NYC area, you should go to the Hospital for Special Surgery as they are the EXPERTS in all problems ORTHOPEDIC!!! The Mets and Yankees team orthopedic surgeons are on staff at HSS, as is my Orthopedic surgeon. (Though, my Ortho surgeon is Chief of Orthopedic Surgery and Joint Replacement at Sound Shore Medical Center in New Rochelle, NY, mainly, he DOES do some replacements at Special Surgery.)

Let me know if you are interested and I can send you a private email with his name.

As for your family and these other surgeons not wanting you to have the surgery - I think they just don't know how wonderful you would feel if you had it done, and it may not be these particular surgeons' area of expertise that you are consulting.

You need someone who has been doing knee replacement surgery for AT LEAST TEN OR MORE YEARS and does AT LEAST 200 PER YEAR! That is usually the criteria for finding a top Orthopedic surgeon who specializes in knee and hip replacement surgery.

Hope to hear from you soon.

Bionicknees2012 (Carol)
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replied August 30th, 2011
Especially eHealthy
Caroline,

I surely understand the back situation. It is not uncommon for knee patients to also have bad backs. And the back situation can usually be worked around if you need to have a TKR.

Like I said, it can't hurt to contact one of the tertiary care centers, like the Mayo Clinic System (not advocating one over another, but that is where I had my last knee replacement done). If anyone has done a case like yours, it would be a system like these.

And before surgery is even considered, they do a complete evaluation, to make sure you are healthy enough for the surgery. You'd be surprised what they can do. So, you might just make contact and see. There is no obligation, as they say.


Don Joy is a great company. Most insurance companies will pick up the cost, if you get your physician to just write a prescription for it. With your history, that shouldn't be a problem.


Wishing you and yours the best. Good luck.
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