Not a doctor, but I play one… in real life!

Tuesday when the doctor didn’t call me with the MRI results, I was really irritated.  Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report.  While regulations prevent them from faxing it, they did put it in the mail.  I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.

Now, if  you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent.  It’s not perfect, nor am I fluent, but I can manage to get the idea.  (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)

So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)

Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend.  So, I will give it a go.

The first thing I notice is that the reports are similar to each other.  Since they took place 6 months apart I first rationalize this must be a good thing.  There was not any significant growth of the AVM over 6 months.  Then I realize she had surgery in February to shrink the AVM.  There is NO significant change at all in the size of the AVM.

Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass”  Now I know that’s the AVM, but I had to take out a tape measure to picture the size.  Then I figured out the other words were obviously location, so I went searching for some pictures.  I took this one-off the www.aafp.org website.

I took a long hard look at this picture and then a long hard look at my child’s knee.  I think it hit me for the first time when I did that.

I mean, I have always known her to be in pain, a pain I belive to be very real and very intense.  But she has often said to doctors, and to me, that her knee is “swollen.”  That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.

But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it. 

So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain.  Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain.  I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8.  It has to feel AWFULLY strange to have something IN there.

The question is – what do you do about it?  When I ask Meghan to straighten out her right knee, she can’t.  She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her.  Her range of motion is clearly restricted.

There are still “tiny feeding vessels arising from the distal superficial femoral artery. (Picture from http://www.orthopaedia.com/display/Main/Femoral+artery

Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out.  When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee. 

For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.

So, now what?

I guess I am no better off than I was if I didn’t have the report.  Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not.  I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants.  Maybe it is OK, and we will just watch it – every 6 months like the thyroid.  Maybe it has to come out.

I guess I will find out tomorrow.

But, for Meghan it doesn’t really change her reality.  She will have pain and restrictions with or without the surgery.  This thing can easily come back – even if they get it all.  So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.

It is amazing to me how infrequently she complains – about anything.  She is my hero.

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