SHC & Family: HIP PRESERVATION: Journey to Freedom

Am I supposed to believe what I am told, or am I supposed to believe what I read?

I was told no continued bone issues. I was told an anterior-inferior labral detachment, pulling away from bone. I was told not common, and typically occurring from traumatic events. I was told there needs to be referral to a juvenile rheumatologist.

What I read states small superior labral tear. What I read states mild great trochateric bursitis. What I read states bony prtuberance involving the femoral head/neck junction, which can be seen with femoroacetabular impingement.

So excuse me while I try to process…eh um, I mean re-process…and try to understand.

I just don’t get it. To think I had to explain this to a medical person today to only then have to re-explain that what I told them was not the same as what I then had to tell them and send them…and to be told that people “sometimes just don’t understand” what a doctor might be saying to them is not fair nor accurate at all in my case.

I understand. I remember things VERBATIM. I am extremely book smart, and my IQ far surpasses normal. Do not question what I told you, or what I understood…I told you what I was told, and now I am reading something that is 180 degrees different, or so it appears to me to be at least. I understand these hip things very well…if from nothing else, from experience.

I do not know what is going on with kiddo, and I am more confused than ever at this point.

So for all the above listed reasons, excuse me now while I go SCREAM!!!!!!!!!

fyi…

Classification vs. Localization of labral tears: classification refers to the extent of damage (as in a grading of damage, from “normal” to 1a, 1b, 2a, 2b, 3a, 3b) whereby localization refers to the affected region of damage (generally described via a clock face location, or in reference to a anterior/posterior/superior/inferior description)

Find info here:

http://www.isrrt.org/images/isrrt/16h15%20DR%20S%20GODINHO%20RM%201A%20SESSION%203%20FRIDAY.pdf

and here:

http://books.google.com/books?id=rxS9EjeGhrMC&pg=PA43&dq=inferior+labrum+hip#v=onepage&q=inferior%20labrum%20hip&f=false

Labral tears result from trauma, femoroacetabular impingement, capsular laxity/hip hypermobility, dysplasia, degenerative

Trauma
There are two types of trauma: minimal trauma and dislocation. The posterior labral tear is associated with disloctation while the anterior labral tear is asssociated with minimal trauma (aka hyperextension with external rotation and abduction)

Femoroacetabular Impingement

This is repetitive microtrauma  from neck abutment against the acetabular rim. This mechanism causes increased shear to the labrum & articular cartilage. There are two varieties: Pincer Impingement results from a non-spherical femoral headabuting in flexion and mild internal rotation. This basically isdecreased femoral head-neck offset vs. “pistol-grip” Pincer Impingement results from abnormal anterior overcoverage. This is the linear contact between the acetabular rim and the head-neck junction (acetabular retroversion).

Hypermobility

This results from an underlying collagen disorders or hormonal hypermobility causes rotational instability. The instability allows the head to impinge on the labrum.

Dysplasia

Labral tears are associated with dysplastic conditions; DDH, SCFE, LCP. The anterior labrum often hypertrophied. Impingement occurs between the head and the anterior acetabulum.

Degenerative

Tears are associated with degenerative changes. Inflammatory arthritides are of note. These tears involve more than one labral region most likely representing end-stage disease.

from http://www.orthopaedia.com/display/Main/Acetabular+labral+tear

http://4.bp.blogspot.com/_bfpRkyFviaI/Sa7LaWhOaOI/AAAAAAAAB2c/ktlZOnnpXR8/s1600-h/aroddoc.jpg

Needless to say, I couldn’t sleep much.

Like pressing rewind and play on a recording machine, the phone call conversation replayed in my head as I pondered things over and over again…and while I tried to initially put thought in the form of written word last night, one thing I neglected to mention was said: “before we do surgery.” That is what prefaced the comment about needing to have kiddo checked out by rheumatology.

So confused, I have searched with smoke nearly coming from my quickly moving fingertips to the point of achey hands, trying to find information on underlying causes of anterior-inferior acetabular labral detachments. Note to all: there isn’t much info out there, as anterior-superior locations are the most common. Certainly there is some information, but it goes back to the other comment that was made about “typical” causes of this issue: things like car accidents and physical trauma. If I said it once, I’ll say it again: there has been ZERO of either. 

I’ve been a stay at home mom, always there for my kids 24/7 (when having not been in surgery anyways) for quite some time. I choose to be, as it provides them with great stability in a military transitional lifestyle. I’ve had employment opportunities, but due to the needs of my kiddos I have not participated. Instead, I have been a volunteer in different capacities, and chose to pursue additional education online for the flexibility of working my goals/needs around those of my kids.

Yet as much as I’ve been here, present in so many ways for my kids (who have excelled in so many ways) I found myself last night double checking with kiddo: has anything happened to you that you might not have told me? Her reply was obvious and indicated that I wasn’t unaware of anything that had occurred, but gosh…for some small peace of mind I had to ask her.

Previously diagnosed over the last few years with some hip underdevelopment, then some impingement and dysplasia, then being told only months later that she is normal and yet seeing/hearing the progression of issues/symptoms makes me think one thing: had kiddo developed this issue to to previous hip instability and, although her hips seem to have improved with time and growth, could the damage have already occurred and just been undetected until now?

It seems plausible in my lay-non-medical mind. I mean, it is hard to know she’s been seen by doctor after doctor and NO ONE ever even did an MRI until now, so who really knows. This doctor at least is trying to figure out the puzzle I guess, after not remembering us and changing diagnoses at the last appointment. The previous doctor, well, she was a whole changing metamorphosis of diagnoses and her recollection of issues was not in tune with what actually occurred at appointments…referring at her last appointment to kiddo’s previous MRI results, which is when we had to remind her that kiddo had not even ever had an MRI at that point in time. Previously, the primary doctor referred her on which was good as he fully listened to what I told him, but before that the last doctor before him point blank refused to even listen and denied any further referrals/testing/etc, telling me that everything from her last set of xrays was normal…which is when I had to tell him to keep reading down, the report had been amended and there was more that it said. Regardless, it didn’t change his opinion. Before that, her initial orthopedic appointment for pretty intermittent issues that we thought worthwhile to check out after my onset of diagnoses/surgeries and learning of the hereditary/congenital nature of many of these issues. That sums up the last 3 1/2 years or so in a nutshell.

Discussing this all doesn’t give me any advancement in understanding, but it does give me advancement in processing. Perhaps if anyone has any information about anterior-inferior labral detachments they could share? I just would rather assume it is a false positive…but I was told specifically that they, the orthopedist and radiologist, could see the dye between the labrum and the acetabular bone, showing detachment. That’s yet another comment that keeps replaying in my mind.

This should be a good holiday season: pops is coming home earlier than expected from Iraq. But, my excitement has been drastically diminished and my feeling of joy and other holiday manifestations isn’t there the way it was not so long ago, as I was cherishing my freedom…the 1st freedom from my hip issues at Christmas in many years…and being able to shop in person at the stores to make this an EXTRA special holiday for my kiddos.

No, instead I find myself grabbing hold to my computer and trying to find information to help progress in understanding until I push it all away and force myself to look at the decorations and holiday lights and remember that there is zero control in any of this as a parent. I did what I could do. I took kiddo to doctors, pushed through insurance problems to get her to the best we can drive to, complained when she experienced pain with physical therapy that was ignored, and dealt with all the times we were told “it’s probably just her psoas” despite her psoas testing ALWAYS being negative. I feel I have done all I could as a mom…one foot grounded in knowing what I know and the importance of getting to the real answer, the other grounded in listening to her and what she was telling me in her best ways she knew how. I didn’t allow people to brush her off, as happened to me for all too many years…but I also kept a check that I was not being all too consumed in things to the point of loosing focus.

Right now, I am consumed though. I know though that the only control in any of this is a control much greater than any of us have. I prayed, VERY hard, for her hips to improve…and it appeared they might be. But her symptoms continued and progressed regardless, and I just was not prepared for what I was told last night.

The weird thing is that kiddo asked me point blank the night before if she had a labral tear…to which I replied no, I don’t think so honey. No, she doesn’t have a labral tear per say, she has a labral detachment…a pulling away from the bone. I guess that’s why the flexion/adduction/internal rotation has hurt her when she’s been tested…not so much from pincer impingement as previously thought but because of labral issues.

So I sent an email with more questions I thought of last night, and hope that I might hear back sometime in the next few days:

I am feeling confused, lost, and alone. And, I am being brutally honest about it right here.

I received a phone call this evening, and have no other potentially understanding adult to speak with about what was said. Certainly it would be great if I did, but I don’t…not right now anyways, as pops is unreachable for awhile, and no one else who fully listens and really understands the entirety of hip things.

I was just told that the MRI shows kiddo has a detached inferior labrum. I was also told that it is not that common, especially in kids this age. I was told that it typically would occur from a car accident or injury, of which there have been ZERO. I answered lots of recurring questions from previous conversations/appointments/emails, and I asked some pointed ones…as I tried to recollect my thoughts.

I asked HOW, if there is no underlying impingement or dysplasia, would this occur? Any instability? Nope…things “looked good” on the last set of xrays. I felt more confused. I just don’t get it.

I asked can labrums heal themselves? Sometimes, I think was the answer…as I tried to mentally understand what was being laid before me.

I was questioned yet again about the onset of pain and symptoms, and with half-brained thinking I began recollecting to the best estimates of years/months/weeks/days of what kiddo had experienced/complained of.

I was then asked if kiddo had complained of issues in other joints, and I answered the same as before in office. Yes, she has…and began to go into more detail and point out to whom I had told what to previously…the ones who listened anyway, unlike the previous orthopedist we had been to at a previous facility. She has complained of her knee and most recently, both ankles being painful as well as her ankle popping. (After the phone call, she reminded me of her popping wrists, back, and shoulders also…but without pain.)

I was then told that before we do any surgery, we need to take kiddo to a juvenille rheumatologist to get her checked out. I was more perplexed, although somewhat understanding of the reasoning behind it without so many words.

I asked if it definitely needed to be a juvenille rheumatologist or could be a non-juvenille rheumatologist, as sometimes as a child gets older the age needs of juvenille specialty diminishes…the response was that it might be okay but that I need to get her checked out by someone. I asked if they could put it in, and the answer was yes.

That concluded the phone call.

Right now I feel sad and confused. I know I shouldn’t worry, but I am.

I am worried about my child. I am worried about more possibilities. I am worried about what I was just told. I am worried about lack of answers and changes in diagnoses. I am worried about false positives on MRI reports…and false negatives as well. I worry because I am a mother and I love and care for my child with ALL OF MY HEART.

I do not want more to be wrong. I did not want ANYTHING to be wrong. But somehow, in my gut, I am feeling that we are at a crossroads of some sort.

In my experience, it is not too common for a doctor to tell someone something without there being clear, remarkable evidence of such. In my experience, they use words like us former air traffic controllers do…words like “appear” and “may”  and other words that don’t put you into a corner to be used against you later.

And, in my experience it is not too common for orthopedic doctors to suggest seeing a rheumatologist unless they believe there is good reason to.

There has not been one specific cause to kiddo’s issues…there has not been a clearly defined start to her issues…and things that normal children should be able to do should not be problematic for her either, unless there was something going on. And now we are at the start of it I suppose…but again, I wonder about previous diagnoses and false results with testing as well…it doesn’t help settle the mind at all.

So what I do instead is document it here, in hopes that others may understand and find that they…if put in similar circumstance…are not alone.

I probably should have asked about the transitional vertebra and if it could potentially be affecting her hip joints and “apparent” issues, but processing thoughts and questions grew further and further from my ability as the conversation proceeded. I’ve coped so much throughout these last years of my hip issues…through so much pain and problems with diagnoses and surgeries and…well, it takes a toll. At this point, I no longer want to ask any questions. I want to know that we are in the hands of people who can just listen to what we tell them and answer to them, and put it all together without any provocation from me.

So now we wait to see where we go from here…literally. Referral to rheumatology in what location I do not know. And as far as kiddo’s pain, since any potential treatment for her issues did not arise, I will just continue to treat as I have been: with ice and naproxen when really needed.

Am I allowed to say at this point, I AM FRIED OUT?

Read here: (caution: graphic pictures)

http://www.orthosupersite.com/view.asp?rID=50773