Bone breaks around the knee :

Old injury and new pain - need advice - - Posted by Mountaingirl (Mountaingirl), 1 January 2005

Hi all,

I am new here and looking for hope.  I will try to make my story fairly short.  12 years ago at the age of 22 I broke my kneecap after slipping on a set of stairs.  To avoid injury (or so I thought) I jumped to the bottom of the stairs after I slipped and when I landed the impact pulled my kneecap apart.  I was a runner averaging 3-5 miles a day at the time and very active.

I went to the ER and was scheduled for surgery to repair it immediately.  At the time I went into surgery I was told that the Dr. was going to put a plate and screws in to repair it.  When I awoke from surgery the Dr. told me that the bottom portion was too small to attach a plate to so he drilled holes and sewed the bones together with a dissolving stitch and put me in a cast.  After I got out of the cast I was in a brace and did PT.  The Dr. gave me a "clean bill of health" three months after the injury.  A few weeks after that I planted the foot and collapsed and knew immediately that it was broken again.  Went back to the Dr. and was told that the original injury never healed.  (I should have gone to a new doc at this point, however, I didn't so that is water under the bridge)...

He then put me in a cast for six weeks to see if it would heal on it's own.  It didn't.  After the six weeks he told me I needed surgery once again and that he was going to remove the bottom portion of bone (which had fragmented into several more pieces while in the cast) and reattach the tendon to what was left of my kneecap.  While I was under anesthesia he changed his mind again and did what he told me was a repeat of the first surgery (drilling holes in the pieces and sewing it with a dissolving stitch).  I again went through the brace and therapy but then was scared to do anything that might strain my knee even slightly, and thefore, gained about 40 pounds over the next couple of years.  

Fast forward six years and a few states later and my knee (which always bothered me to some degree) began to have sharp pains and make a crunching noise going up and down stairs.  I went to a new doc who told me that I needed a lateral release and a "clean up" of scar tissue and cartilage which was done arthroscopically.  I was pretty much pain free after the healing period and short rehab.  

About two years ago I began having different excruciating sharp pains that come out of nowhere and last anywhere from three days to a month where I can barely bend my knee because the pain is so severe.  It happens every couple of months and there is no rhyme or reason as to why or when it happens.  I went to an OS that was "highly recommended" by my primary care physician.  At that time I had an MRI done and the OS said there was something suspicious but he didn't want to do any type of surgery until I could no longer stand the pain. He essentially told me to "lose weight" and wear a knee brace he had fitted for me.  The longer I wore the brace the more severe pain I was in so after a while I just quit.  I have tried walking, playing racquetball, bicycling and other active things but just when I start losing weight and making real progress the knee will "go out" and I have to stop until the pain goes away and start all over again.    

I finally worked the courage up to go back to him a few weeks ago after another bout with severe pain and tell him I could not stand it any longer and asked him to fix it.  He took an x-ray and told me that my knee is "damaged goods" and can never be "fixed."  He compared me to Humpty Dumpty and told me to eat less and lose weight.  He suggested I try a course of physical therapy, try the knee brace again and that I did have the option of another lateral release and "clean up" surgery if I chose to (however, he sounded like he did not want to do that).  He is very difficult to talk to and I really get the feeling he does not want to even try to help me.  

My other concern is that this time my good knee has been hurting while I have been limping around which is a new development.  Am I the only one that is considered a "hopeless case?"  I know I should get a second opinion but I fear that a new doc might tell me that I am just overweight and broken also.  Any advice out there?  Thanks so much for being patient enough to read my long post.

Pam
Posted by lizl (lizl), 2 January 2005

Pam,

First, welcome to KneeGEEKS.

And now for the rest of the story...GET THEE TO A SECOND OPINION DOC AND MORE AFTER THAT, IF NEEDED! Before you do anything else and before you accept the hopeless diagnosis, get more information.

Look on this board for the list of knee docs or just go to another OS who is not affiliated with the one you've already seen. In my own experience, I found the second opinion doctor to be a source of new information that helped me make a decision, and I am convinced that the added knowledge helped me avoid a third and maybe even a fourth surgery and the additional rehab that would have gone with that. I didn't even get to choose the doctor for the second opinion, but he was still very helpful.

It sounds to me like the OS you are currently seeing is either uncaring or knows he is out of his league in dealing with your knee. I wonder about that lateral release, by the way, as a solution to the problems you were having. But, of course, I'M NO DOCTOR!

In any case, right now you need more information and you need a caring doctor who has some answer other than lose weight (jimminy, I could certainly stand to lose weight, but a hex on any OS who gives that as the primary solution).

Keep in touch, but make some phone calls tomorrow!

LizL
Posted by Mountaingirl (Mountaingirl), 3 January 2005

LizL,

Thanks for the input.  I will certainly get going on second opinions.  I have chosen to not begin any physical therapy at this time, althouh I am walking 30-45 minutes a day to begin to strengthen it and some days are good and some bad but at least I am moving.  When you mentioned that you wonder about the lateral release, do you wonder if it was possibly not necessary?

Thanks for your time and response.

Pam
Posted by rozzzie (rozzzie), 3 January 2005

Pam,

I agree with LizL, you NEED a second or third or even fourth opinion.  You must be comfortable with the OS and his plan of treatment.  Don't settle for less, you're worth the best.

Let us know how things are going.

Hugs
Rozzzie
Posted by HHB (MHB), 3 January 2005

Hi Pam,

What a long road you've traveled! Am with the rest about seeking another opinion, a knee specialist, right away. No need to suffer if you don't have to.

About the other docs .... did they say exactly what the problems are?
Quote:

Rozzie, LizL and MHB,

Thanks so much for your input and encouragement to contact as many OS as I need to.  One of the things that concerned me so much was that the current OS would tell me that there was something "suspicious" and not be willing to give me any more detail.  When I asked what he meant by calling my knee "damaged goods," he said "it is what it is.  It won't get any better."  I do not have any notes or reports on the MRI and x-rays that he ran either.

This current OS also placed a piece of sports tape over my knee and said "this is what it will feel like if you have surgery."  I was also a little uncomfortable that he was willing to make such a general statement.  He did not seem concerned at all when the x-ray showed that all of the pieces seemed to be "free floating."  I am assuming that cartilage has grown around these pieces but still wonder if the sharp pains I get are when those pieces move around a bit.

I am trying to look up my most recent OS that did surgery.  His office is about an hour away which is a distance I am willing to travel as my recovery was so quick from his "clean up" and lateral release.  

Thanks again to each of you for taking the time to respond and let me know that I was not the only person who is struggling with this   and to nudge me to contact other OS.  

For now I have made the decision not to follow through with the PT and have begun walking with a friend on a padded gym floor to see how my knee handles this.

Take care all and I will keep you informed.

Pam

It is so common to trust one's doctor beyond all common sense and only to question after obvious problems. I'm no shy violet (in fact, I'm known to be a pretty pushy broad), but I have to really convince myself to be openly critical with my doctor! The more scared you get, sometimes the less likely you are to pressure the doctor, when you would be fierce in any other circumstance. I understand that, Mountaingirl.

If I go back and reread my journal and all of my posts here on the forum, I can see times of hesitancy eventhough I actually knew what I had to do.  The agony and the anger of having to seek a second opinion really added to the overall ordeal. Posts on this forum and encouragement from other Kneegeeks gave me the determination I needed to go through the hassle and legalities involved in getting another opinon before I underwent another surgery.

After my second surgery, I went to a different PT, only because the first one had moved. Lo and behold, that switch also turned out to be a very positive one.

Overmodulated: Did you have smooth going with your first OS or did you walk in the shoes of those of us who had to get another doctor involved? People who have not gone through that particular process don't understand how difficult it is to make the decision. After a traumatic injury, everybody is fragile. Finally coming to the conclusion that you have been short-changed by the person who was supposed to be safe-guarding you only makes you feel more vulnerable, abandoned, and gullible.

Pam: Stop beating yourself up. You are in the process of making the right decisions. By the way, I did ask for my post-operative reports and never got them. I finally saw the post-operative report from the first surgery when I was in the second-opinion doctor's office.  Seems that he had no trouble getting it! I figure I'll finally see the post-operative report for surgery 2 after it goes through my lawyer! It's one thing to know what is supposed to happen (what the law says you are entitled to) and it's entirely another to see what actually happens.

My advice, not that you actually asked, would be to go to an entirely new OS--one who has no vested interest and can assess your situation from a completely new perspective, though I certainly understand your desire to go back to the doc who made you feel better.

LizL

Hi, Pam. Welcome to KneeGeeks!!  

I'm sorry to hear you are having such a difficult time with your OS. I like Liz's suggestion to see an entirely different OS who would most likely give you an unbiased 3rd party opinion. Like she said, there is a listing of recommended docs on this site - see the KNEE SURGEONS link in the main menu above.

Since I am a Tib Plateau baby, I cannot give any other specific advice.  But I would say read some of the other posts as well in the other sections related to your injury. That should help you out to at least know you are not alone in dealing with your injury.

At any rate, again welcome and keep us posted on your pursuit of an answer!!  

This old Forum was so valuable that we have kept it as an archive. It is just for reference. If you want to ask questions or offer advice, there is also a current Bulletin Board which you can access from our home page.