what is the magic number for surgery?

[marthak]

What is the magic number for surgery and why?

Here's my query based of our recommendations for surgery.

This April we went back to our scoliosis doc two months early because for five years in a row she has had pnuemonia and asthma which is worse over the last year, I noticed a larger list in her standing, and she damaged her left hip when running which I thought was because of her pelvic tilt.

Since then, we have had 2 appointments about my girl (T46, L31) at Stanford and Children's Hospital Oakland and both had recommendations for surgery. The docs there have excellent reps and their surgical records for the last few years are great. Our doc at Children's has the better record (very little wound infection is the significant difference) and he's super sweet, he's been treating her since she was diagnosed during a scoliosis screening at school in seventh grade (she's in 10th now). She wore brace faithfully and with a smile, she's athletic, she's funny, she jams in school, she's a nice kid.

So here is my question. I asked about the hip and the asthma, and I heard "not related to the scoliosis". Really? Common sense says are you nutty? But the docs said those health problems really don't occur until curves are at 80 to 90 degrees. Really? So i listen hard...and you still think surgery is the way to go? Yes. Why? Well its not causing health issues but we recommend surgery when a kid gets to 50 degrees. After the explanations they really said it was for aesthetic reasons, but my girl really likes the way she looks. And she does look pretty good and fairly balanced, although one shoulder is a little higher.

But I really believe that the fact that one lung does not fully inflate does add to her difficulty breathing. She usually pushes between 200 and 300 on her flow meter, and 300 is rare. Shes on daily inhaled steroids and has an inhaler as well. And I think that the pelvic tilt in a competitive runner does make injury and hip pain more likely. This hip pain started when her curve worsened. They say no, but they are surgeons, not physical therapists. The physical therapists they work with on the sports kids all say, oh yes, this is a common result. Then the docs say stop saying that, so they do.

When I asked the docs if there was another reason to get the surgery besides aesthetic reasons, both were flustered and said this is a medical surgery, not an aesthetic one, so i asked again, why now and why not wait until the impact on her body is present. I made my recommendation said both because is she was my daughter this is what i would do. Okay. But I believe there is something missing from this conversation, some piece I don't get. it feels "muddy" to me.

I suspect they can't say its for medical reasons only, maybe for insurance reasons? But my insurance company is all for this, and ready to pay for extras as well. What is going on? My other thought is that they don't want to influence us too much so they leave it balanced as if it could go either way.

What is the magic number and why?

- Martha K
living by the Bay in No California

[scoliomom]

HI,

sorry you're having such a difficult time, i , too, believe there is a whole body connection.. AND surgery is NOT needed this early. I'm wondering if you've done some other checking on conservative non-surgical treatments? My daughter as a 39' and 40' curve (last x-ray 3 mos. ago). I've been doing extensive checking on the SCHROTH method of treatment which you can research on line... and she was just fitted with a CHENEAU brace... only 1 or 2 people in America make it, Luke Stikeleather is in Fairfax VA and trained in its use... I believe it is the best thing at this time..

as far as DRs. I believe most ORTHOS lean toward surgery, that is where the $$$ is and it is quick for them!!!!
good luck

[alyssah]

Hi there, I DO NOT believe that surgery is a money issue. Scoliosis is not a medical emergency, but with some children it can be later on in life. My daughter was almost 12 when she had her spinal fusion.(T50, L32). At this time in her life she did not have her period yet and she was growing at a rapid rate. She got to this point with her curve in 8 months. She had sugery in Feb of this year. Our decsion had nothing to due with appearance or pressure from out Surgeon. It had everything to due with her age, her growth yet to come, and what she would go through in her 60's. We all want what is best for our children and every child with scoliosis is different. Alyssa is doing very well and is back to doing everything she did prior. Basketball, Vollelyball, dancing, swimming. If you have any quesions feel free to ask. My private E-Mail is colleenh@yahoo.com.

[laurieg6]

I was told by our 1st orthopedic surgeon that curves that are over 45-50 degrees when growth is completed are the most likely to continue progressing. I think the risk of progression, coupled with high curves, together are the key factors in the recommendation for surgery. Your daughter's doctors might see surgery as the only proven method to stop her curve progression at this point or they'd probably suggest a brace.

I used to think that if you go to a surgeon for a consultation, of course you'll get a recommendation for surgery. My family has been dealing with scoliosis since my son was 5 years old though, & there was never a suggestion of surgery of any kind until he was in his adolescent growth spurt & his curves had quickly grown to T45 & L60. I wish I'd known earlier about fusionless surgical options such as vertebral stapling for my son's lumbar (compensatory to his hemivertebra) curve. I don't know if it would have helped or if he would have been a candidate for it but I think his curves are too big now to even consider it. He wore a TLSO brace instead for almost 4 years. He also had a variety of manipulative treatments such as craniosacral massage, Hellerwork, chiropractic, acupuncture. Nothing was helpful against the forces of his adolescent growth spurt. But everyone's different & I think that some curves seem destined for progression no matter what you do to stop them whereas most curves either respond to alternative treatments or, apparently, don't progress to the point of needing surgery regardless of what the patient does.

[rainbow2010]

My doctor said that a tilted pelvic bone is a sign of scoliosis. That is one thing they check for when screening. As for breathing difficulties, some is scoliosis related. As a lumbar curve increases, it pushes your organs up into your chest area, restricting your breathing.

Magic number is usually 45 -50 as that is when other health concerns come inot play. The curve is more visible, but breathing difficulties, nerve problems, bending and quality of life issues weigh in at that point. Most orthos are not in it for the money as surgery takes 3-8 hours and is very demanding on them. It is easier for a doctor to say, "Here wear a brace and I will watch your curve. See you next month and don't forget to pay on the way out!" They make more money off of office visits than surgery.

[Jessie's Mom]

Surgery vs. Bracing

My daughter is 16 with a 34 degree curve from T6 to T12, convex right. She has worn the Charleston Bending Brace for two years. But although she is in the moderate range of curves - she has significant back pain. My daughter WANTS surgery to alleviate the back pain (and I suppose for cosmetic reasons as well). Our ortho won't even consider surgery unless she progresses to 45 degrees. I think most orthos prefer conservative treatment unless the curve is above 45 with a low risser score with the potential for significant growth. Does any know if surgery relieves the back pain associated with thoracic scoliosis? Has anyone tried acupunture or a chiropractor for the back pain associated with scoliosis?

[Pips]

Hi

At age 14 I had a double 45 degree curve which was left unoperated as it was under 50 deg. My surgeon told my parents that below 40 degrees it was unlikely to progress and above 50 degrees it almost certainly would progress but at 45 it might or might not, so they did nothing.

It stayed at 45 for ages (into my twenties) and then started to progress. It got worse through my thirties (it got left so long because of the awful health service we have in this country) and by the time I hit 40 years old I had a 75 degree curve in my lumbar spine and a 60+ degree curve in my thoracic spine.

I had some problems with my digestion because my internal organs were squashed and one of my lungs was quite badly compressed and then had to have the surgery at age 42 when it is much harder to get over. I got around a 50% correction (they couldn't do more as my spine was too stiff because of my age).

I don't advocate rushing into surgery for your daughter, but would say that you need to keep a very close eye on her and if you decide surgery is the best route, get it done sooner rather than later when it is easier to heal etc,

To sum it all up, in my experience, the 'magic' 50 degree number that the surgeons throw around is right and you really don't want her progressing past that This surgery is not done for here and now, when she is young fit and active, but for later when she is getting older.

Good luck with it all.

[amandap]

Hi Jessie's Mom,

Is it possible the back pain is being caused by something other than her scoliosis?

A 34* curve is way to small to even consider surgery.

Amanda