Dangerous curves ahead
(Babe 1 created by Ken, here, and Babe 2 created by SingleDad)
My mom tells me that the woman on the left will kill me, and the doctor today told me that with the woman on the right, there is no way to tell. What to do? Whatever … you take your chances.
We went for a second opinion on Pearlsky’s scoliosis today. This doctor is the chairman of orthopedics in a major hospital, he has been around for years, and I really trust him. He is the kind of doctor who tells it like it is … even when it hurts. For instance, David’s ankles and feet are not so good orthopedically. He has explained all the options, including pretty scary surgery and then he adds, “And you do realize, that even if we fix these orthopedic issues, he will never walk.”
A couple of years ago Pearlsky may have broken her wrist. We went for x-rays and then went to the orthopedic clinic. I saw the nurse manager and asked if we could see Dr. K. She told me that his daughter was getting married the next day and he was not in. As we went to wait in the waiting room, Dr. K. walked in the door, in jeans and “street” clothes. He said “hi,” I congratulated him on the wedding, and he said he was just in to grab some papers. Two minutes later we were called, and, yes, Dr. K. examined Pearlsky and the x-rays. We all left together. This is the kind of guy he is.
Since our physiatrist is at the competing big city hospital, we originally went to their orthopedic director for the current scoliosis issue. They gave us the barely usable body jacket (in boring white) (my doing), and the bit of a push for surgery. Today we went to Dr. K. for a second opinion.
Right off the bat, he boggled my mind. There is a set of x-rays from October that both teams are using for the original diagnosis, the image above is from that set. The other doctors measured the curve shown at 52 degrees. The doctor today measured it at 60 degrees, about 20% larger. WTF? The same image, both using computerized tools for the measurement. Does it matter? Well, from a scientific / engineering point of view, hell yes. From a medical point of view? Not really. A doctor may say yes, but I prefer doctors that go by symptoms rather than numbers AT TIMES. It is sort of like if you look at a woman (or guy) and think she is drop dead gorgeous. It does not matter if she weighs 100, 120 or 150 pounds, whatever the number is does not matter, it is the looks. Well, it should be the same in some medical instances. Do we care what Pearlsky’s Tegretol level is (one of her seizure meds)? As long as it is not in the toxic range, I want to keep the level wherever the seizures stop, the actual number is moot. But I digress …
He looked at her sitting in her chair.
“I can see the curve, but she looks good.”
I explained how it is close to impossible for me to put her body jacket on her by myself. He shrugged and said “don’t.”
It comes down to the fact that no one knows what will happen. She stopped growing years ago. The body jacket may or may not make her more comfortable in her chair. The curve may or may not progress. The jacket will not remove the curve, it will just hold her straighter when she is in it. And not all that much. There is really no need to do anything until she is either uncomfortable, there is any damage (organ, etc.), or her ribs are touching her pelvis (don’t even want to think about that). In essence, why fix it with major invasive surgery when in fact, there is no real problem? Why struggle with the jacket when it probably makes no difference?
As for the pictures above … I’m stuck with the one on the right, and too old for the one on the left. Either one may just be the death of me …
Well, hearing that doctor’s take on it makes me feel pretty good (and it’s all about me, I know). It confirms just about everything that I have ever read on the subject. If your kid doesn’t have an **acute** onset or progressive curve, things can be okay for a long time if not forever. You may only have to tweak the chair a bit and make sure the cushion is really good to even out the butt pressure. I know the hip to rib cage thing sounds scary, but, that is actually where Sophie is…and we’re doing okay with it. Every kid is different, though.
I like that doctor’s perspective, too. It’s a very lucrative operation. Most orthopedic surgeons simply go by the numbers; refreshing to hear of someone who doesn’t. Like Claire, I’ve chosen not to treat my daughter’s scoliosis/kyphosis surgically, partly because fusing her spine from her pelvis to her neck would take away what little movement she’s still able to manage on her own. Her spine, along with everything else about her, is of course cause for endless concern and second-guessing myself.
I concur with the doctor. I have a fairly severe case of scoliosis but aside from an occasional backache that’s easily alleviated with Advil I haven’t suffered any ill effects (except to my vanity).
In Perlsky’s case, where she’s not, I’m sorry to say, going to be planning a career as a professional athlete, she’s probably better off without the surgery.
Surgeons make their living from cutting people open. When there’s something horrible growing inside that needs to be cut out then a surgeon’s your man (or woman). But sometimes surgeons are too eager to get in there are mess around, often with extremely painful and disappointing results. I know of three woman who had scoliosis surgery and they were laid out in extreme pain for months, despite doses of meds that would put Charlie Sheen in a coma.
If”s a difficult call but I think you’re right in leaving Pearlsky as is.
You are NEVER too old for the one on the left. Besides, if she thought you were, she would just set you on fire. That’s Liz from Hellboy, or at least my more curvy interpretation of the comic-book version.
But while the news itself overall is good, why do I find myself focusing on the nuggets of negative?
Before you say ‘Because it’s you.’, I understand that already. But I just shake my head, frown, and get upset in the knowledge that you, like so many other parents (and I right now…though I still have a legitimate CHANCE to hope this changes) can’t ask ‘Are you comfortable?’
It just sucks man…it just plain old doo-da sucks, and how MANY problems could be solved if we could only figure out ways to communicate with our kids? Maybe we should be spending a TON of money on devices that could facilitate that? Some kind of space-agey direct link thing? Probably ain’t happening in THIS government.
Need a harder dick? Let’s research how to make that happen. And it sure as shit is easy to spend a few hundred million dollars on missiles man…that’s a fuckload of fun. Let’s blow up some families and kids in a place we sure as shit are never gonna visit in a part of the world we have no business sticking our nose.
AGAIN.
Left or right, what a way to go…. Exciting either way.
I’m a long-time lurker. Saw this article today and am curious to hear your sardonic commentary.
http://abcnews.go.com/US/judge-decide-paralyzed-mother-kids/story?id=13211318
Isn’t the act of suggesting that the commentary will be sardonic a little…presumptuous? Not to mention a bit rude? Sardonic means ‘characterized by bitter or scornful derision; mocking; cynical; sneering’. I have yet to understand why SingleDad has so many people kind of camped up his ass regarding his method of delivery.
So few people really ‘get’ him. It’s kind of sad. Not so much a statement about him, but about people in general, that they can’t distinguish between sarcasm and sardonic, or between anger and frustration, or between negativity and realistic assessment of a situation.
I find him to be a very complex, very honest, very forthright person, maybe a little rough around the edges when he has to be, but also refined when he has to be. Dignified, intelligent, well-researched, loyal, and he only expects what he SHOULD expect, he doesn’t expect miracles from the people who care for his daughter, he expects what they are supposed to deliver for her care and when they don’t it pisses him off.
He expects human beings to treat each other with a certain level of decency and respect, and when they don’t it bothers him and he voices it. Is that really unlike anybody else?
But damn does he get slammed a lot, and unfairly so.
Just my opinion.
Of course, if you were just busting balls and I completely missed that point entirely, then I am totally sorry and will go back to my side of the pool.
I knew I should have put a smiley emoticon 🙂 after that adjective! I meant it in the most affectionate way (if that’s possible). I wouldn’t be reading, much less actually asking to hear his opinion about an article if I didn’t truly value his point of view.
I appreciate your passion too Ken; it’s nice to see people stick up for one another. Actually, I think that’s what SingleDad is all about.
Don’t bother staying on your side of the pool, it’s more fun when we mix it up **pool party**
Sweeeeeeeeeeeeet….
I’ve been so FREAKIN wound up lately, I have been jumping to my boy’s defense really fast lately if I even smell the faintest whiff of trouble. I’m like that really annoying dog that used to hang out with, was it Marc Antony or something that was the larger dog on the old Looney Tunes cartoon?
Anyway…I’m glad everybody’s hugging!
Sinlge Dad: If the surgery won’t improve the quality of Pearlsky’s life (which it seems like it won’t), then don’t do it. I’ve stopped doing things that don’t make positive changes in my son’s life. I no longer care if it is medical protocol. If it doesn’t improve my son’s life, screw it. (He had a massive stroke when he was 7.)
Ken: I have recently realized that I jump to defend my sons so quickly because I think that I failed them. How could I not protect them better? How can I be a good mother if I did not know about the evil lurking in my son’s brain (by which I mean the stroke-inducing lesion)? It was my job to keep them safe, and, boy do I feel like I failed. I can actually be a bit more objective now that I realize that I need to take a deep breath and figure out why I am feeling the way that I am.
An added thought: I never found those horrid corsets with the metal stays to do a damn thing other that make me sweat down my back.
I have no idea if this would be relevant, but saw this on another blog that I read, regarding scoliosis. http://jacksonsdailyupdates.blogspot.com/2011/03/charleywrap.html
Good job.