Scoliosis Support  

Go Back   Scoliosis Support > Scoliosis > Kyphosis, Lordosis and Flatback Room

Notices

Reply
 
Thread Tools Display Modes
  #1  
Old 6th February 2014, 05:45 PM
tricializ tricializ is offline
Junior Member
 
Join Date: Jan 2014
Posts: 6
Default Conflicting doctor advice. What to do

Hi all:
My son is 14 and just was diagnosed with SK. He has a 76 degree curve up high. Anyway, the local orthopedic doctor prescribed the milwaukee brace for 2-3 years and pretty much "see you in 4 months". He said he has about a year and a half left of growth.
Went to Shriners yesterday and that doctor said he is pretty skeletally mature but probably does have another year or two of growth but that he doesn't think the brace will work much at all long term. The nurse asked me an odd question in the hallway, "Does he want surgery?" Um no…who does. So I am not sure if that is what they are thinking. They talked about the threshold for surgery being in the 75-80 degree range but also did more X-rays to look at growth plates and also him standing straight. His spine is still really flexible (surprised them) and he can stand straight. They want him to do exercises for 6 months and come back for re-evaluation. They also seemed surprised he isn't in pain and it doesn't bother him. Are they just playing the insurance game of "We did 6 months of conservative treatment…..blah blah" in order to justify surgery? Do you think that's the foregone conclusion? To go from one doctor saying, "yep this will not get worse and if you do this it will be fine" to another saying "nope won't really work" makes me have a headache. Any advice is appreciated. Thanks.
Tricia
Reply With Quote
  #2  
Old 7th February 2014, 12:37 AM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 120
Default Re: Conflicting doctor advice. What to do

That all sounds very confusing.

One thing to help sort it out for you is that Shriner's isn't really hobbled by insurance. They'll take insurance, if you're covered. But they'll offer you exactly the same treatment even if you have no insurance/can't pay at all.

Shriners tends to be the more expert opinion, unless your orthopedic surgeon has a specialty in scoliosis/kyphosis. Did they offer anything specific for exercise? Or just general physical therapy?

I'm equally surprised that your son is so flexible. Mostly these structural curves can't be straightened out much. I thought that was particularly true of SK, but that's not my son's diagnosis, so I don't know as much about that.

I wish the two doctors offered a clearer path. It's frustrating to have to choose when you can't really know which is the better choice.

I'm hoping someone with the same diagnosis as your son can chime in.
Reply With Quote
  #3  
Old 7th February 2014, 01:07 AM
KMaxwell KMaxwell is offline
Member
 
Join Date: May 2013
Location: Washington State
Posts: 342
Default Re: Conflicting doctor advice. What to do

Hi Tricia and welcome-

Sorry to hear you and your son are going through all of this. It can be confusing and scary.

I have SK and wore a brace when I was a teen. I can give you my thoughts on why your son's doctors might be saying and recommending what they have.

Prescribing a brace is typically the first course of action in a situation like your son's. It sounds like the first doctor isn't a specialist in spinal deformities sp he is probably just following the standard protocol.

I've read many articles that say bracing doesn't really work in terms of correcting SK - my understanding is it can keep it from getting worse or temporarily improve the curve but that it's not really a permanent solution. I think that's especially true for someone whose curves are over a certain degree. I've also read that having the curve higher up is harder to brace and therefore less successful.

Perhaps the nurse asked about surgery because a lot of teens seem to want the surgery to correct the curve because they’re self-conscious about it. I can tell you I would have LEAPT at an offer for surgery when I was a teen but at the time I was told it was too dangerous for my degree of curvature (which it was, the surgery is a lot safer and more effective now).

My guess about the six months of exercise is to determine whether or not your son’s kyphosis is strictly postural – folks with postural kyphosis can normally straighten their curve so the plan would be to build up the muscles through exercise to support the spine and correct the curve. If exercise doesn’t make a difference that usually means the curve is structural. Then further treatment options are considered.

About the doctors seeming surprised your son doesn’t have pain - folks with a degree of curvature like your son’s tend to have pain (though it’s not always the case). There are people on this site with slight curves with a lot of pain and folks with greater curves with little or no pain. My curve is 80 and I’m in a moderate amount of pain which is getting worse as I get older.

I don’t think the Shiner’s doctors are gung-ho for surgery for the insurance money. My guess is they figure that bracing won’t help and they’re trying out other options first (like exercise); and then if that doesn’t work then they may want to talk with you and your son about whether or not surgery is the right option.

I’ve read that the indications for surgery on SK include one or more of the following:
1. Curve of more than 75 degrees
2. Whether or not the curve is becoming progressively worse
3. Moderate to severe pain
4. Breathing issues (usually for curves over 100 degrees I think)
5. Nerve damage from the curvature
6. Self-image (poor self-esteem) due to the curvature

Most surgeons will NOT operate on someone if the only indication is a self-esteem issue; the surgery shouldn’t be considered a cosmetic procedure.

Long story short, I do NOT think surgery is a fore-gone conclusion. It sounds like the Shriner’s doctors understand SK better than the regular orthopedic doctor and are trying conservative treatment (exercise) first and then want to follow-up with your son to see if it was effective. If it does turn out they recommend surgery, it may be better to have that done sooner rather than later. My understanding is that the complication rate is lower and the recovery time a lot faster when the surgery is done when you’re a teen or young adult.

If I were your son and I had no pain or self-esteem issues because of the curvature then probably the only way I'd ever consider surgery is if the doctors determined that the curvature is progressive.

Here’s a couple links to articles that talk more about treatment options for SK. I wish the best to you and your son as you sort all this out. This is a great site for asking questions and voicing concerns if you need it.

http://www.orthobullets.com/spine/2061/scheuermanns-kyphosis
http://www.spine-health.com/conditions/spinal-deformities/diagnosis-and-treatment-scheuermanns-disease
__________________
- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
Reply With Quote
  #4  
Old 7th February 2014, 01:14 AM
KMaxwell KMaxwell is offline
Member
 
Join Date: May 2013
Location: Washington State
Posts: 342
Default Re: Conflicting doctor advice. What to do

Ps. To add to Hduggan's great post - yes, SK is considered a strictly structural curve, not postural. My guess is that if your son has true SK than he may be flexible enough to straighten his spine somewhat but not completely.

For example, I have an 80 degree curve which straightens out to about 55 degrees when I lie down. I'm considered to have an very flexible curvature for someone with SK (especially for my age) but I still don't completely straighten out when I'm lying down.

By your son following the 6 month program of exercise, the doctors will be able to determine if his curve is purely postural or structural.
__________________
- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 50 degrees and my scoliosis to about zero.
Reply With Quote
  #5  
Old 7th February 2014, 01:42 AM
tricializ tricializ is offline
Junior Member
 
Join Date: Jan 2014
Posts: 6
Default Re: Conflicting doctor advice. What to do

Thank you all for your thoughtful replies. Makes a lot of sense. The doctor at Shriners did mention surgery as an option and kept asking if he was in pain, was it uncomfortable, did it bother him etc? So I think it might lead to that. I don't know. Both Shriners and the regular Spine center guy her in Omaha said it was a Scheuermann's Kyphosis and the one doctor did point out the wedge shaped vertebrae. I don't know the degree of curve when he stood straight but it looked pretty darn straight to me. He does have a fairly significant lordosis down low that the doctor said is just self-correction for the kyphosis. I would think his core would be pretty strong given that he was a competitive swimmer for years. But he seems fairly committed to doing the exercises. They had a PT come in and show him specific things to do.

Now this is really out there but years ago, he was diagnosed with mild hypotonia. So I am wondering if he gets all core strength up etc. does it matter if the signal in his brain is telling his muscles to relax? Granted the hypotonia is not noticeable to me nor anyone else. It was just a sidebar in a whole long diagnostic visit.

Thank you again for your insights.
Tricia
Reply With Quote
  #6  
Old 7th February 2014, 02:52 AM
hduggan hduggan is offline
Blue
 
Join Date: Aug 2009
Location: Portland, OR
Posts: 120
Default Re: Conflicting doctor advice. What to do

Quote:
Originally Posted by tricializ View Post
Now this is really out there but years ago, he was diagnosed with mild hypotonia. So I am wondering if he gets all core strength up etc. does it matter if the signal in his brain is telling his muscles to relax? Granted the hypotonia is not noticeable to me nor anyone else. It was just a sidebar in a whole long diagnostic visit.
The hypotonia is interesting. I'm not sure how much difference it makes with kids like your son and mine who have odd shaped vertebrae, but I do think that weakness in the muscles can make these curves worse (although science is all over the map on the topic). My son also had poor muscle tone, and saw an occupational therapist for a long time when he was younger.

I don't know how hypotonia responds to exercise, but it seems like if he's doing well in swimming, he's probably able to increase his muscle strength.
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT +1. The time now is 10:45 PM.


Powered by vBulletin® Version 3.7.1
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
(c) Scoliosis Support