Thursday, September 29, 2011

Appointment review and a rant... or two

We're done seeing our specialists for the month. Urology went well with nothing new to report. He peed on the urologist but seriously, I wonder how many times a day that guy gets peed on...

Anyway, next was orthopedics. Orthopedics always makes me nervous. I've never really had a reason to be nervous before. Now I do. But let me start from the beginning. We had been seeing Dr. H but at our last appointment he told us he's moving out of state so he set up our next appointment with Dr. R. I met her for the first time at this appointment. She's very nice and so far I like her. Except for this conversation...

Dr. R: Based on Dr. H's notes, it looks like Lewis's defect is at the L4/L5 area.

(I've read the notes that she's talking about and in the notes it says that I told him that. I NEVER told him that. I don't even KNOW Lewis's level but if I had to guess, that's not even what I'd guess.)

Me: I don't know his level.

Dr. R: Well, it's good that it's L4/L5. Kids with that lesion level typically will have a desire to walk. Any higher than that and we don't see that as much.

Me: Ok.

Conversations like this REALLY REALLY bother me. They make me very angry. I wish I could come up with the words to say in the moment but I never can. She said all this before ever even looking at or touching Lewis. Not only that but I DIDN'T ASK HER TO TELL ME WHETHER LEWIS WILL WALK. I don't think anyone can tell me that. My world does not revolve around whether or not Lewis will walk. It is not always on my mind. When I meet someone and that's the first thing on their mind, it throws me off a bit. Wait, do you not see my beautiful child? Is that all you see?????

The whole lesion level thing really bothers me, too. All it does is cause heartache and worry and give us wrinkles and grey hair. It tells you nothing.... NOTHING. Every day I hear, "he's an L3 but he's functions like an L5." Really? What is an L3 supposed to function like? Because it seems like NO ONE FUNCTIONS AT THEIR LEVEL. So maybe the level really actually doesn't mean a gosh darn thing!

Ok my first rant is over, on to the next.

Next, Dr. R checked Lewis's spine for scoliosis. She said his spine looks great. YAY!!! This got me thinking back to the whole syrinx thing that is still up in the air. To refresh your memory: Lewis had an MRI in May and they found a rather large syrinx, which is excess fluid on the spine. He's not showing any symptoms, but according to his neurosurgeon, Lewis may not be able to tell us even if he is experiencing some of the symptoms (pain, tingling, etc.). He'll have another MRI in November and based on that, Dr. F may decide to operate. He'll either do a decompression or a tethered cord release. He'll probably start with a decompression, but there's no guarantee it will fix anything. So... my point in all this is that scoliosis could be a symptom of a syrinx. And, guess what?! No scoliosis! Now, what about the other symptoms that Lewis can't tell us about? Pain? I'm like 99.9% sure Lewis is not in pain. Have you seen this kid? He's so happy! And if he's not, you know it! That kid is not in pain! So, what are we left with? Tingling? Really? You'd do brain surgery for some tingling? That just seems completely and totally ridiculous. Just CRAZY! I realize we're trying to prevent damage, but I know the signs to look for and I'll take him in the second I see any of them. But we're not going to be doing some preventative brain surgery that might not prevent anything.

You have got to be kidding me...

Back to the appointment. Lewis had X-rays of his hips 6 months ago since he's at risk for hip problems. He had them again at this appointment and they showed his left him has moved out quite a bit. Bummer. They won't do surgery for these hip issues in kids with SB since they don't have the muscle mass to keep anything in place once it's surgically placed there. I'm thankful for no surgery. They're ordering him an abduction brace that he'll wear at nighttime to hopefully carve out a spot for his hip to sit. Having one hip out can lead to one leg being longer than the other (among other issues, including scoliosis), requiring him to wear a lift in one shoe. We're a long way off from that and we're praying this brace does the trick. It's frustrating, and I feel like I did something to cause this to happen, but I'm not as worried about it as I thought I'd be. This stuff is not the end of the world like I always think it will be. If only I had known that while I was pregnant!

Crossing my fingers! Hoping this brace does the trick!


  1. Oh, yes, yes, yes to this whole post! I do wonder about how often urologists get peed on and how often GI docs get pooped on. I'm sure it's rather gross, but you'd get used to it? Just like mom's do ;) Levels, levels, levels. I think we all have a serious love/hate with those numbers - mostly hate. They tell you nothing and mean even less it seems. And yet, many of us desperately want to know what they are and cling to them! Hope? But only if they're good!

    I didn't realize Lewis was dealing with the syrinx issues that Kingsley had! Minus the complications though, fortunately. Tricky little suckers those syrinxes are. I hope it doesn't ever cause him trouble!

  2. Lauren, I could not agree more. I was just talking to my coworker about that whole being boxed into a level thing. Why does it fricken matter? I think it just makes the doctors feel in control because then they can use their check box of if level... then do ... SO FRUSTRATING. Great news on the scoliosis! Bummer on the hip but we will be sending lots of positive thoughts that the brace does the trick. So, once last question though, do you think there are any orthos in GR who don't box our kids in according to their lesion level. Should we pay for them to all go to an ABM training?


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