Needs Encouragement

[joanfan123]

Hi, I am Joan and I'm 16, here is my story-

October '09- First went to Dr. for my left knee pain
May '10- First MRI, showed a growth plate problem and ganglion cyst, my Dr. choose to ignore both and diagnose me with patella tendinitis. I then went through a month of PT that did not help.
February '11- I could no longer straiten and lock my knee.
May '11- Once again diagnosed with patella tendinitis with added diagnosis of bursitis (even though at this point the whole leg was noticeably smaller than the right)
June '11- More PT, and still no full range of motion.
August '11- Lost range of motion to the point that I could no longer walk and had to use crutches. Also had x-rays after a bad pop, showed a cyst in the bone and that my knee was mis-aligned pretty badly, but nothing was treated.
September '11- 2nd MRI, showed nothing new but a small meniscus tear on only one picture. Still on crutches and getting very annoyed.
October '11- Switch Dr.s, new one gave me a cortisone shot and scheduled an arthroscope, something the other had talked about for two years.
November '11- Had arthroscope, no meniscus tear, my fat pad had grown in between two bones in my knee keeping it from straitening so they removed that part.  Normal recovery should have been 4-6 weeks and 2 days-2 weeks(tops) on crutches, but my Dr. and Physical therapist both said it was going to be a lot longer because of how long it took to have surgery.
2 weeks post op- Stitches out, went from an ace around my knee to a pretty supportive unhinged brace, still on crutches but trying to use my leg.
4 weeks post op- Regained ability to fully extend my knee, still on crutches though.
6 weeks post op- Finally off crutches but my knee was giving out about 15 times over the course of the school day so I was given a new brace that is hinged. There was also mention of ACL or PCL problems, which I do not understand how that is even possible considering there was a camera in my knee a 6 weeks prior and 5 and a half weeks since had been spent on crutches. It was also suggest at this point I consider using one or two crutches, an idea I was extremely against.
8 weeks post op- My Dr. measured my quads and my left is still 2cm smaller in circumstance then my right and he wants them to be with in 1 cm of each other before investigating my ligaments. Knee still giving out and buckling and I am still wearing hinged brace.
10 weeks post op- Still in brace, PT says I am not allowed to run or jog, knee still gives out. This week my insurance decide they were cutting off my PT even though my Dr. wrote me a prescription good for another 5 weeks.
12 weeks post op- Still in brace, no PT in 2 weeks but I have been doing my exercises. I now get muscle spasms/cramps through out my leg mostly in my calf. Knee pain is getting worse again.
14 weeks post op- (now) Still in brace and knee pain is getting worse, cramps/spasms slightly better with heat pad. Knee still gives out about twice a day.

I see my OS in a week, any questions anyone thinks I should ask? Any works of encouragement? Anyone have a similar story with a successful outcome?

I really don't think there is much more the OS can do for me at this point but hope I am wrong.

[The KNEEguru]

Hi
Clearly you have had a lot of problems and investigations. It is not altogether clear to me, though, what your symptoms were in the beginning and how they progressed, and I wonder if you could try breaking this down into more manageable chunks?

How about describing first of all how it all started in 2009? Did the pain just come on on its own, or was there an injury or overuse of some kind? Where was the pain experienced and what kind of pain was it? What brought it on? What helped it? At the beginning were there any other symptoms, or was it just pain?

Were you a dancer, or a gymnast or sportsperson?

What was tried in the beginning before the first MRI, and what was the doctor's reason for doing the first MRI?

KNEEguru

PS I see you posted this same post in three different sections. I do not think that is a good idea. If it is not getting responses in one section, the best thing is to drop me a note and ask me to move it for you. Otherwise people start to answer, and then find that their response gets lost because someone else answers one of your other posts. Just thought I would mention it.

[captainruss]

Joan,

First thing with your insurance, you need to contact them and speak to a patient advocate.  I have 50 PT visits available every calendar year and used double that number in 2011.  I had so many surgeries that I used my 50 up before the end of June.  The last two surgeries my doctor ordered PT 5 days a week.  He wanted me to do PT twice a day but insurance would not go for that.  They tried to tell me no more PT visits so my OS sent them an order for inpatient rehab at a rehab facility.  Blue Cross begged me to take 50 more PT sessions because the comparative cost to inpatient rehab was enormous.  I would never agree to go to inpatient rehab because I was afraid of becoming infected and would not want to spend more weeks away from my family, but all BC cared about was the cost.

Second, it you have a PT or an OS that is not listening to you are tells you must take the pain, you need to get another one.  The same goes for pain management.  If you are in that much pain, someone is not doing their job.  There are so many kinds of treatment including oral meds, topical meds, patches, shots, steroids, accupuncture, massage, PT, electric stim, ultrasound, hot water, compression, ice machines, etc etc.  I will try to post again with Missmyknee's blog address.  She has a pain management handbook that tells you exactly what to say and how to get relief.

Do not wait or do not let anyone tell you what you should take.  There are lots of people her....especially the moderator who watches and points us to other knee geeks who have answer.  You are not alone.  I am actually signing my 14 year old daughter Kiani up to knee guru because she injured her right knee in Taekwondo 3 years ago.  She fractured one of her growth plates and they put her in a cast.  Now, one side of her leg is growing and the other is not so she is slightly bow legged and her patella is dislocating.  Her problems are totally different than mine, but I got her Xrays and MRI's and I am taking her to three (3) OS in the next 90 days.  I have one chance to get her fixed or she will suffer for the rest of her life.

Keep your chin up and remember that the only dumb question is the one you do not ask.  I guarantee you someone on this site has seen everything you could imagine.  Please let these very experienced people help you.

Russ

[joanfan123]

Russ,
My parents where about to start the whole appeals process with Anthem BCBS, but then my grandfather got very sick so they have been dealing with that and the appeal kind of fell through the cracks. It wasn't a limit type of thing, they just said in the letter that I wasn't making enough progress.

Both my OS and PT are great. I haven't really seen my OS since the pain started again so hopefully he can help but I have already exhausted most options. Anti-inflammatory meds don't help really anymore. I don't really want just pain management at this point, I can't just be trying to control my pain I need a long term solution.

Hope your daughter finds help, I know there are a lot of people here with similar situations to hers.

Kneeguru,
The pain started on its own, it is mostly on the lower medial side of my knee and sometimes in the center of the knee cap. The pain would be bad for a few weeks and get better for a few weeks, but by May it stopped having good days so I went back to the OS and since I had been there twice for pain he decided to do an MRI. I then did PT for a month for patella tendinitis, nothing really changed and I just ignored the pain. In February of '11 was when I lost full extension and in June I did more PT with no improvement.  By August I had lost about 20 degrees and couldn't walk so I was put on crutches and also found out my knee was misaligned and I have a bone cyst. When I had been on crutches for a month and my OS didn't really want to do anything I switched OSs(I should have done that sooner). In October I got a cortisone shop which was amazing and I could finally walk again. In November I had a scope and part of my fat pad that had been preventing my knee from straitening was removed. When I stopped using crutches after the surgery my knee started giving out.

The pain in mostly a dull but intense pain when it is in the lower medial side. I also some times get a sharp shooting pain in the center of my knee. In the beginning it was just pain.

I used to be a horse back rider and a hiker. I haven't been on a horses since a little after the pain started. The summer of '10 I hiked but had to miss a really big hike that I had been look forward too for a number of years because of my knee, and this summer I couldn't hike at all. I also tried cheerleading the '09-'10 season but not since because of my knee.

Joan

[The KNEEguru]

Thank you for elaborating on your early symptoms. Patellar tendonitis is so-called because the patellar tendon is involved, which is underneath the kneecap, but you seem to be saying that your early symptoms were medial. The fat pad lies underneath the patellar tendon, and in some people it can indeed be large and get nipped, but another thing in that area is the medial patellar plica which can also get nipped and can cause problems with full extension. Was that mentioned in the MRI at all?

You mention also that there was possibly a meniscal tear, and a flap of meniscus can also prevent full extension, as I am sure you appreciate.

Where was the bone cyst in relation to these three structures?

[joanfan123]

Although it was expected to be a meniscus tear once in my knee with a camera the OS could see the meniscus didn't have any tears. The fat pad had grown in between the thigh bone and the shin bone, and which was causing the extension issues, so it was cut there. Though the plica wasn't the problem when sending a note to my school my OS called in plica syndrome. I don't know where the cyst was but it was kind of dismissed as far as causing issues.

[The KNEEguru]

Did you mean 'called it plica syndrome?'

Anyway I am getting a picture here - it appears that for quite a considerable time when you were a growing child you had some problem in relation to the patella which seems to have caused painful obstruction to full extension. You did not find it relieved by physiotherapy and became very dependent on crutches, losing strength and bulk in your quadriceps muscle with consequent wasting of the leg in comparison to the other side.

Since surgery to remove a part of the fat pad, symptoms have abated and you have come off crutches but you now have continuing problems with regaining range of motion and the knee keeps giving out, so that you depend upon a knee brace for stability? In addition you are having cramps mostly in the calf and the  knee itself is becoming painful again? The whole history has been about 2.5 years and much of this time your knee you have either been on crutches or braced?

How about your passive range of motion now? Take a look at these photos of normal range of motion - http://www.kneeguru.co.uk/KNEEnotes/node/754 How do you compare with flexion and extension if someone else helps you to bend and straighten, and you just relax your muscles while they do it?

[joanfan123]

I think he diagnosed it as plica syndrome, although I don't think that matches what he actually did.

I have normal range of motion based on these pictures although compared to my right knee I am still a few degrees away in flexion but have full extension. There is only a slight difference in my passive range. The biggest problem is my knee is giving out about 2-3 times a day. I think I have the cramps pretty much under control using a head pad and drinking more water, but the knee is becoming more painful. I spent 6 weeks on crutches before surgery and another 6 weeks afterwards, and the whole time since the surgery in a brace.

[The KNEEguru]

Thank you. The picture is clearer to me now.

So your original problem may have included a meniscal tear that healed itself, or an over-large fat pad, or a thickened plica that was catching and causing pain or a combination of these. Whatever the original problem was, you have regained range of movement and the problem is 'giving way'.

Giving way may occur simply because of weak quads, or there might still be something periodically interfering with smooth joint movement (such as the plica). I cannot see how cruciate ligaments are simply going to damage themselves, inasmuch as you had no significant injury - so for the moment I think you should put that to one side.

If your range of movement is as good as you say, I think you can also put arthrofibrosis well away.

The medial pain that you are still experiencing is clearly relevant, and again I would think meniscus or plica, both of which have the potential to heal themselves, although they sometimes need surgery. You are young, and not that long out of surgery, and it may just all need more time, and more quads work, while you continue daily activities with the brace.

You asked about questions you should ask the OS about. I think that you should ask him to see if you have physical signs suggesting a medial plica, and ask him to confirm what was said before about plica syndrome. You could ask his opinion about whether the continuing giving way is more likely due to quads weakness or could it be possible that it is secondary to a plica catching?

[joanfan123]

I just had an OS appointment today. He seemed pleased with my progress and that helped put things into prospective for me I think.

 I got to ditch the hinged brace for a Breg Adjustable Horseshoe Soft Knee Brace. So far I think this brace is helping more especially on stairs. A new brace means I need to come up with new outfits that work with it. Since this is a slip-on which I haven't had before, if anyone has suggestions in the fashion department I would be grateful.

I also came back with a new diagnosis, Chondromalacia. My OS said to do much now would mean more surgery that would involve messing with my knee much more than my previous  surgery but didn't really explain. But for now he wanted to see if the new brace along with continued quad strengthening will help and hopefully keep from doing more surgery. For now I think this is a good approach. If anyone can tell me more about what this means I would really appreciate it.

[The KNEEguru]

Chondromalacia is not a diagnosis as such. It is a term that means 'cartilage softening' and implies that the joint cartilage is under stress. However you will read a lot on the internet about chondromalacia as if it is an actual diagnosis.

See
http://www.kneeguru.co.uk/KNEEsurgeon/grelsamer01/index.php?itemid=46
http://www.kneeguru.co.uk/KNEEnotes/node/1086

Regarding the quads. Quads weakness in itself is a major cause of problems, and especially if the medial (inner part of the quads) is weak. The forces around the patella tend to pull it out to the lateral (outer side), and this is counterbalanced by the quads, which restrains it from going to the outer side. If you have been immobilised for a long time, then it is likely that your quads will be weak, and that is likely to be why the bad leg is thinner than the good one.

If the patella does not ride in the middle of the groove in the underlying femur (thighbone) then there are abnormal stresses on the joint cartilage of both that part of the patella pressing to the lateral side, and also on that part of the joint cartilage of the femur where it is pressing. Such pressures may lead ot joint cartilage softening (chondromalacia) and pain and possibly giving way.

The original diagnosis is still a bit unclear to me. It may have been fat pad impingement, or a synovial plica, or both - but it may be now that with quads strengthening all will simply settle down. Let us hope so.

[captainruss]

Joan,

I found the "knee dictionary" site on Knee Guru to be very informative.  I went through and looked up each one of these terms...."Chondromalacia.... plica.....the "LOA"...etc..  I am not sure if I am spelling them correctly, but each one is spelled out very clearly.

I had another poster put this site up for me: http://etelligentmedia.com/ghsortho/Dr._Paulos-The_Maligned_Patella_7_23_10%5B1%5D.ppt

It is a power point showing pictures (I learn better that way) to go along with the five dollar medical terms.  I don't know if this will help, but I was the same way...I did not understand like the moderator says that Chondromalacia is actually a condition....not a complication.  Everyone most likely has some amount of "softening of the cartilage", but is it to the degree that causes pain or instability? 

Knowledge is the key.  My OS diagnosed my daughter last week with Chondromalacia and stated she needed a lateral release (LR).  I know now that he has absolutely no idea what the degree of softening of the cartilage might be, but I did call back and ask questions.  I NOW know that he plans on scoping her, looking around, and then deciding what HE thinks she should have done and I would learn about it after her surgery.  I am discovering that any knowledge you need is somewhere on this site.  Just keep looking and keep asking.

Russ

[joanfan123]

There is a lot of conflicting information out there on chondromalacia. At this point what I know is that my patella is mal-tracking to the lateral side, which is what is damaging the cartilage. My current brace is supposed to keep this from happening. My options seen to either be surgery or keep wearing the brace. I would need some sort of re-alignment surgery but I don't know which one. I get the impression from my OS it would be more major than the arthroscope I had before, that combined with my instability issues leads me to rule out Lateral Release based on what I have read about it.
I am supposed to go on a big trip to Poland and Israel for two weeks the end of April and then I have and AP test two weeks after I get back. So I couldn't do surgery until at least May or June, but I REALLY don't want to spend my summer on crutches, so I would really like to wait till just before school starts or if I have to a month into the school year(I don't want to miss the first weeks of school). My only concern with waiting is will is it cause more damage to my cartilage?
What your daughter's OS os saying is pretty much the same plan mine had when I had a scope.

[captainruss]

Joan,

That is what is making me crazy....do the scope and lets see what is in there.....but if scope and rehab don' work we need to go farther.  She is taking college courses this August, is working on her private pilots license... If they have to do surgery, we need to do just one.  I know that is presuming a lot, but I am SOOOOO tired of OS telling me lets try surgery and if it doesn't work....guess what....we can always do surgery again! 

The really sad part is eight ( surgeries and two years later, I was better before any one of the surgeries.  I had no idea what I could live with and work with and play with until I was introduced to multiple TKR's, AF, and HO.  Please let me get in the time machine and go back 2 years...I won't have surgery until they drag me into the OR.

The sad part is I am old....so I have time to wait.  Or at least I did have time to wait.  You and my daughter are just entering the prime of your lives and cannot afford to be suffer thru OS playing the cut and see game.  You both need a complete cure one time and then rehab.  Anyone that says multiple surgeries does not wear you down obviously has not had multiple surgeries.

You need to get mad...get very mad and demand that someone get this right. 

Russ

[The KNEEguru]

Hi
I do not think that your story, Joan, and that of Russ's daughter are directly comparable. His daughter, so he tells us, had an injury to the growth plate with a consequent bony alignment problem which appears to be contributing to the patellar pain.  Your problem seems more to be one of post-surgery rehab with weakness of the quads muscle.

What you need to understand is that it is not that easy just to "demand that someone get this right". The kneecap and its tracking are very subtle, and the degree of discomfort when it is not tracking properly can seem out of proportion to the physical problem. Surgery like lateral release in a young person like you can be the beginning of a surgical rollercoaster. You tell us, Joan, that your brace is relieving the pain, and to my mind you would be wise just to continue using the brace and avoid surgery until your quads are stronger. Then maybe try taping once the brace is off. Then maybe try VMO stimulation (VMO=vastus medialis obliquus or the inner part of the quads muscle). Then see if you can can build up your exercise tolerance with something like biking.