opinion needed re 13 year old daughter's knee

[Heather_M.]

Lisa,

It sounds like you are describing 'squinting patellae' when it seems like one or both of the kneecaps face the inner part of the knee. This is a well known phenomenon due to femoral or tibial torsion--twisting of the leg. Here is a photo:



Here's an article about PFS that includes squinting patellae and how a good exam should be conducted: http://www.clinicalsportsmedicine.com/chapters/24b.htm
Here's another article that covers signs and symptoms and consequences of PFS, including the now worn out term 'chondromalacia': http://veggie.org/run/chondromalacia/  It also shows the types of tests that should be done on her kneecap.

If Heather does indeed have this, she needs to be seen by a PFS specialist--someone who does the open patellar realignments and osteoteotomies. It's not that she'll need these procedures, it's just that you want someone who knows how to use every weapon at their disposal to fight PFS, and somone who understands this problem and the impact it can have on your life. A lot of OS's won't touch a knee with PFS, or they'll just recommend the old standard 'lateral release,' which is why a lot of us started coming here! Many cases of PFS are resolved by PT, though with a severe structural problem, surgery may well be warranted. Anyway, it's important to see the right kind of specialist so that you don't do a scope if what she has is PFS!! Because then she'll need specialized PT, which should be given some time to work. It's critical to interrupt the pain phase and allow her to work without sharp pain--to do this they will use special taping techniques, bio-feedback, e-stim during quad exercises, etc.

Heather

[Teresa_S]

I think what Heather just wrote about was discussed earlier in this post , because I remember seeing the same picture, and the following writing that it did look like her daughter's knee. Right now, without therapy, I don't think that this is going to get better, as the longer the condition goes on the harder it is to restore balance to the knee. I agree with earlier writings that the original injury 2 or 3 months ago probably contributed to causing the pain, and shoving her kneecap just far enough off to make it much worse.AND< as I well know, months and months of therapy may not help if you don't have a therapist that knows what they are doing. In many cases, the doctor and therapist don't seem to interact although, part of the therapist's responsibility is to give the dr. a written report, and suggestions every 2 weeks to a month, and then have a re evaluation every month or so to check for improvement from the original and last eval. IT is up to the DR> to actually read it, and consider it. Mine, like he does with my personal phone calls, never bothers to read the therapist report, and if I bring it up, just tells me the therapist is wrong. IN MY CASE, I would have to go with the therapist as they do actually touch my leg, and work the knee, and the OS has not physically touched it , unless under anesthesia, for over two years. Although her knee is the topic to be solved, again, this post, like many others, seem to focus in on the treatment, or lack of, that the OS gave. I can personally understand her moms helplessness, as the physician seems to demonstrate complete lack of respect for both her and her daughter, by his lack of concern, diagnosis, or even attempt to try to comfort the patient.In most cases, the patient and her family are willing to accept the fact that even in medicine, mistakes occur, and we can forgive a dr. for making a mistake, if he really tried, and was competent, and actually thought he was doing what was best. BUT , what I, as a patient, CAN"T FORGIVE is the politics of medicine or a dr. who doesn't CARE about his patients and does not EVEN attempt to comfort the patient, and family, when they obviously need it. A few words of explanation, or even empathy or sympathy go along way in establishing a trusting relationship.Hardly ever will you see another physican intervene in cleaning up their profession, even though they want the "bad drs" gone, as they are intimidated by the legality because they don't want to be involved legally, financially, or personally, and risk their own profession. THEREFORE, that unspoken code wins again, and the physicians who practice poor medicine go on to retirement.Even other drs. are afraid of being sued by the bad dr. As I expressed before , I would not expect to see any real compensation for the last visit. I once went to a orthopedic clinic, and after 4 hours of waiting, was told to come on back, where I was subjected to a brief visit, without benefit of any real exam, and basically told that "it was fine". I went on to have a complicated surgery for the condition I had sought help, so when I received my notice from ins. saying they had paid that OS over $400 for a CONSULTATION, and I owed $30 or $40 , I contacted the billing office at the clinic, and explained, unemotionally, that I had waited four hours, and then seen a resident briefly (THERE are insurance guidelines for the amount of minutes, the degree of consultation charged) and he did NO EXAM, so I had to seek care somewhere else, and then told them the surgery I was recovering from. SHE HURRIEDLY REASSURED ME I OWED THEM NOTHING> I received a certified letter to the same effect, and an offer of"anything we can do to help you anytime." BUT I DID NOT EVER SEE WHERE THEY RETURNED THE INSURANCE CO<> MONEY!!! Another time, a surgeons fee was paid by my insurance co. and the my husbands paid the same thing, although my insurance co paid all that was required per my contract, so they wrote off the balance, and the reinstated it, when my husbands paid. I contacted his insurance co and told them and their answer to me, was "IT is up to the doctor to tell us, and send it back, we won't ask for it back."" I just sent them a letter with both EOBS and told them to NEVER NEVER TRY to recover the overpay from me. SO no matter, how I have tried to intervene, it doesn't seem like I accomplish much. I caution you AGAIN, in the manner in which you complain. I don't mean don't address the fact, as if you are unhappy , you have the right to tell them so, but take it up with the physician, or his office manager FIRST. Good luck, Teresa

[amyliz920]

kinda adding to heathers post, the picture that she just showed, looks a lot like what my knees used to look like although I was never officially diagnosed with that condition. I will back her up though in the fact that you want a dr that knows how to deal with it, and that might be willing to do and osteotomy on a younger person. I got mine done ( 2 open wedge High Tibial Osteotomies) while I was still pretty young, which helped me recover quicker and even though it's a rough surgery, I really am grateful that my dr considered it an option. Have you ever heard of the osteotomy procedures? I'm curious to see what the new OS has to say.
Praying for you guys
Amy

[upset_mom]

Hi Heather, Teresa and Amy,

Thought I'd write you all in one note re patella femoral & squinting knee -- I don't think that is what my Heather has. Three out of the 4 doctors did not think that was it. The one that initially thought it was patella femoral related changed his mind - that was doctor No. 1. Heather's leg from the knee down is turned. It looks quite different than from the pictures. I had at one time thought it looked like that but now that I look at the pictures along with Heather we don't think that is the problem. I still have to take a digital still and post it to show you all. Haven't had the chance to get around to doing that yet but hopefully will some time next week. We will see what this next OS says and then take it from there. If he says just pt we will pursue that plus, as I mentioned, maybe go to the other doctor who specializes in pain in N.Y. She has been trying to put some pressure on her leg when walking to try and avoid atrophy. Her knee looks slightly swollen under the knee cap on the outter side and up a little on the outter side too. The doctor in N.J. said she had a little fluid around there - said it was just a very very small amount. Thanks for all the info - I found out from seeing all these OS's that when I ask them if it's this or that, they have their own opinions, so I will just wait to hear what is told us next time around. Bottom line, I don't want her to wait too much longer without anything being done - at least starting some sort've pt would get her muscles strengthening but then again we have to wait and see what the docs say. Hope one of these doctors has the right answer. I can understand why some of them hesitate to do any sort've surgery on a child this young when nothing is showing up on any tests and I can also understand that many times nothing shows up when there is a problem. Still can't figure out why the so called specialist from HSS said if it was orthopedic it would've manifested itself much more by now - but then again he was an awful example of a specialist! Will keep you all posted. Hope you and everyone on this site has a great, pain-free as possible weekend!

Hugs, love and prayers to all!
Lisa

[John1]

Hi,

Does anyone know anything about posterolateral rotatory instability of the knee? Apparently it can be caused by tears or partial tears in the PCL, LCL and other structures in the posterolateral area of the knee. I ask because the doctor's report that Lisa posted on 6/16 said:

"...with posterior lateral subluxation of the tibia on the femur"
"...a significant valgus deformity and significant posterior lateral rotatory subluxation of the tibia on the femur."
"She has marked sensitivity over the lateral joint line. She has no sensitivity over the medial joint line."
"Her patella is well seeded within the femoral groove. She has no patella instability."

The report also said, "due to the long standing subluxation of her knee [tibia on femur], there is a possibility that this is now a static deformity which may require significant open releases of the posterior lateral corner." I take this to mean that if some of the stuctures in the posterior lateral area were torn or partially torn, scar tissue may have formed because of the lack of range of motion (ROM) and the scar tissue needs to be cut out to get the ROM back. Is this correct?

It sounds like this doctor was the only one that actually found a specific area of the knee where the problem is localized--the posterior lateral corner. It is a rare problem, so that might explain why some doctors didn't diagnosis it.

Any comments?

John

[upset_mom]

Hi,

I just received the report from HSS. It is about 2 pages in length. I will write her some highlights.

PHYSICAL EXAMINATION: Heather is a somewhat emotional labile 14 year old girl. She has full range of motion of both upper extremities, shoulders, elbows, wrists, and hands. She has full forearm rotation bilaterally. She has no cutaneous abnormalties over her spine and no pain to palpation over the spine. There is no evidence of spinal deformity. She resists any motion of her right leg with distraction she appears to have full rotation of both hips and full flexion and extension of both hips. She has full range of motion of the left knee. On the right side, she has full extension with flexion to approximately 70 degrees once again with distraction. She prefers to rest with her knee flexed 20 degrees and the hip internally rotated 25 to 30 degrees. This gives the clinical appearance of valgus of the right knee, but with her knee in full extension and the hip in neutral rotation there is no evidence of clinical deformity. There is no evidence of significant knee effusion. There is no redness or warmth about the knee. She complains of diffuse tenderness to palpation about the knee. Distally, she is neurologically intact and she has full range of motion of both feet and ankle subtalar joints.

IMPRESSION/PLAN: A 14 year old girl with negative hip and knee films with persistent right knee pain internally rotated position of the right lower extremity and flexed posture of the right knee. Her radiographic workup including bone scan and MRI to date have all been negative. Her history and examination are most consistent with pediatric pain syndrome, although not necessarily specifically RSD. I recommended that Heather obtain some routine screening labs today. Assuming that these are negative, I think that it would be prudent for Heather to be seen and evaluated by a pediatrician pain management specialist. I recommended Dr. William Schecter at Columbia Presbyterian. I will facilitate mother getting in touch with him. In addition, she was given contact information regarding other pediatric pain specialists. Mother will follow up with me regarding labs in the next few days.

Okay - Columbia Presb. phoned and scheduled an appointment with an associate of Dr. Schecter for 7/28 as they said Dr. Schecter passed her on to his associate. We have, as I believe I mentioned in a prior post, an appointment with an OS up here on 7/25 who I am only telling about 2 OS's we saw -- the one in N.J. and one who is in this OS's network, per the advice of my physician who told me not to bring any reports into this doctor. Any comments or opinions would be greatly appreciated. I am so tired and stressed of seeing her on these crutches yet she can walk without them but walks really funny and I don't want to see her damage her hip or anything else. So my saga goes on. Please feel free to give me your input. I look forward to hearing from you. You are a great means of support to us! To be continued....................................... sounds like a soap opera (have to joke a bit to keep sane).

Hugs,
Lisa

[swikle]

Lisa:

I would follow your doctor's advice and leave the medical records at home. You and Heather describe to him what her symptoms are. A flexion of 70 doesn't sound like much to me, I'm sure I'll be corrected if I'm wrong. Pain management at this point may be a help to her, but they need to find the cause so it can be dealt with.

You're in my thoughts, hang in there.

[dimples3887]

I seem to find this whole thing strange that everyone says she has something different, but yet they don't do any treatments to help her. I wish you both the best with pain specialist in hopes to get her off of those crutches. I know I hated them when I had them! In your very early posts about your daugther, I saw that you had questions about pain levels going up after PT. I definitely can agree with that. Going into PT recently, for the first time in 3 years due to patella instability, my pain was a 0 if not a negative number. 2 weeks later, I ice probably 4 times a day and have learned to love my ibprofen again and again. I really hope that the pain specialist and the group of OS's you have seen can come to a decision about your daughter. Good luck with everything!!!

[trudy]

I just read your months of frustration! I went through something similar with my 13 year old daughter only it wasnt knees it was her stomach. For six months she would curl up in a fetal position in excrutiating pain - we were at the emergency room at least once a week. In reading I wondered why they have to mention that she is an "emotional" 13 year old girl. All 13 year old girls as well as boys are emotional.... At any rate although it wasnt knees and this is off topic -we wound up going to 16 doctors all told and they all had a different diagnosis. Her primary care doctor (who delivered her) finally "threatened" to hospitalize her for psychiatric problems!!! To make a long story short she wound up having one of the largest hernias they had ever seen in a 13 year old girl. My point is I feel your pain - I feel your frustration - I cry your tears with you - dont give up - YOU are the only one she can count on. I will keep you in my prayers!
Trudy

[upset_mom]

Hi Sandy (Swikle):

I am thinking now about not even bringing in the MRIs to the OS up here - just telling him they were negative and possibly bringing the report from the doctor from N.J. or writing down what he thought it was. I mean I have so many MRI's not to mention bone scans, hip MRI, etc. I just probably will say we have 2 different opinions and I know my daughter's leg and knee "never looked like this before the injury" and then take it from there. Thanks for your comments. They're greatly appreciated!

Hugs,
Lisa

[upset_mom]

Hi Dimples (cute nic):

Thanks for writing. I now realize the pt will be painful after months of posting on this wonderful board. She definitely will need to do pt. Yet she says when they gave her ice and when she iced it at home the pain was much worse with the ice...........hmmmm - I don't understand that but that's what she said. Well now I have to wait and see what these other two doctors say - each one not knowing I saw the other - oh what a tangled web I'm weaving:) I want to be honest but found out when they hear you've been to so many doctors they start to think only God knows what. But I am going to keep going until something makes sense.

Hugs,
Lisa

[upset_mom]

Hi Trudy,

Thank you for such a heartfelt message! You certainly were through a lot with your child. Thank God they finally found out what was wrong. How did they finally figure out it was a hernia? And, did you tell each doctor all the doctors you saw? Just wondering. You are so right as to how they can say a teenager is emotional, like that's unusual. I'd get emotional at any age if they were bending my knee and hurting me! Let alone, teenagers who are going through hormonal changes, etc. Well the doctor who wrote that eval was a very unemotional man, very cold, and no smiles - he probably could use some emotion in his life to lighten up, especially as he deals with children. Best way to describe him would be if he were a woman he'd be very likely frigid (smile).

Thanks for keeping us in your prayers. Without faith I don't know how we could continue with this whole mess. Keep in touch!

Hugs,
Lisa

[Heather_M.]

Lisa,

Definitely bring the MRI. Bring the radiologist's report, but don't give it with the MRI (don't give it unless they ask for it, in other words--that way you can see if the OS knows how to read MRI's on his own). Don't bring the other doctors' stuff, but the MRI is an objective and completely neutral piece of film. So the doctor should see it, and take into account his OWN views, when he makes his diagnosis. Of course, MRI's are not foolproof. And neither are the people reading them--sometimes a new set of eyes will see something others missed. My OS does this all the time--sees scar tissue and other problems that were glossed over or dismissed. My previous OS helped diagnose my PT's boyfriend, who had fallen off his motorcycle and walked around for over a week on a broken kneecap!! The ER doc and hospital radiologist missed it, but my old OS saw it right away while looking at the same films the others saw. So you will want to bring those films, just hold onto the radiologist's report--hopefully the new OS will know how to read the MRI on his own.

Good luck.

Heather

PS It's common for ice to feel like it's making the pain worse. Make sure your daughter has a decent layer of cotton (like a dishtowel) between her skin and the ice, and also that she leaves it on for at least 20 minutes. It does seem like, at about 10 minutes, the ache created by the ice is unbearable. But it will get better. At 20 mins, her knee should be numb. Ice will hurt if you don't have enough insulation between the skin and the ice, though.

[upset_mom]

Heather,

I have CDs of both knee MRIs - ordered each from different OSs. I also still have the original films of the MRIs that have to be returned to the MRI facility. They are "negative". The doctor from HSS looked at copies and just concluded per the reports (and he also looked at the films I believe) that they were"negative". I figured just to show him the report from the N.J. doctor before he ordered the MRI, if you recall that - believe I wrote his comments somewhere on here. This doctor we are going to uses the same MRI facility where we took them so he will more than likely go with their reports anyway. But everything remains to be seen. I'll know more after we see him on Monday 7/25 and then more than likely we are going to follow through and go to N.Y. and see this pain specialist. Then maybe I can try and sort things out and figure how to proceed. Thanks for your input - ultimately I have to make these decisions but I am taking all the advice I am receiving on here into account. Thanks again. Hope you are feeling alright these days. One good thing is both the pain specialist and the OS accept the new insurance and all we have to pay is a $15 co-pay - big difference from what I paid at HSS!

Hugs,
Lisa

[dimples3887]

Hey Lisa,
Two things crossed my mind when I read your response to my response earlier. Either 1) This is more of a muscle problem which would require heat to feel better, not ice...or 2) Right before a body part goes numb from icing, there's a chance there could be increased pain until it goes completely numb. It may be a personal thing but unless I have pressure on the ice (to hold it closer to the skin) when icing, my knee doesn't get completely numb from icing and only goes to the painful state in the suggested 15 minutes of icing. If I use an ace wrap to hold the ice on for 15 minutes (obviously without cutting off circulation from it being too tight:) ) my knee gets past the pain state and goes numb. Even sometimes at PT, the ice isn't cold enough to make me numb. Do either of those explanations help make any sense?? I know this is only to help temporary pain and won't solve all of her problems but it might help. I wish you both the best and good luck with the other docs!