Practical questions about exercise and surgery

[hdugger]

So, my son had his follow-up appointment with Dr. Hart today.

Since he started exercise over the summer, his curve *looks* much, much better. If I really stare at him, I can see it, but it's not that obvious otherwise. Before he started exercising, the curve was almost his defining characteristic. Much of the change, I think, has to do with the massage/stretching work that moved his head further back and put the curve back in his neck. The other part I also attribute to the massage work. His masseuse did some work right around his should blades so that the "up" blade on the right dropped down and is now even with the other blade. But, since the summer, the rib hump has also become much less apparent.

His xray was either much or somewhat decreased, depending on who's reading we're taking. Dr. Hart re-measured his old xray from Jan, 2009 as 63 degrees (the old Dr. measured the same curve as 56). Dr. Hart measured today's xray at 57, and the radiologist measured at 48. So, hard to say. Maybe it's a little bit down, or maybe it's just past the 10 degree error range down.

But, my take is that, if he's still in the 50 to 60 degree range, that's a curve which is very likely to progress. If he continues exercising and drops into the low 40s, I'll feel a little different. But, right now, my take is that he's looking at surgery either sooner or later.

Because he also has a small syrinx, Dr. Hart feels like that tips the scales towards a sooner rather than later surgery. But, he's not emphatically pressing and he suspects that both curve and syrinx and pretty stable right now.

A few interesting points:

* Because of how high his thoracic curve is (T2 to T7), Dr. Hart does not think he's running a risk of it going into his lumbar spine. Any compensatory curve is also going to be pretty high.

* Per our recent discussions about revision surgery, Dr. Hart thought that there was very little chance of revision surgery for such a high curve. He said that the revision he does are almost always lumbar.

* If he did surgery, he would fuse (I think) T2 to T12. I'm sure about the T12 part - I'm less sure where he wanted to start the fuse.

* His kyphosis is around 63 degrees. The only other measurement I have on that is from his first xray when he was 16. It was 50 degrees at that time. My understanding is that kyphosis in this range is pretty stable.

* His rotation is around 30 degrees. According to Dr. Hart, that's less than he would expect. I have no idea what the old measurement on that was. It's actually the rib hump that we've noticed the most change in recently. It used to push his shoulder blade way out. Now the blades are almost equally pushed back.

* He's not in any pain.

* He's not concerned about how he looks.

I'm not sure I even have an actual question. I just wanted to muse.

[Dingo]

hdugger

If it was me I'd do my best to avoid surgery if at all possible. I'm not anti-surgery but I would use it as a last resort. Like I've said before if my son needs VBS or fusion I'll do it.

Why not spend a few hundred bucks on some type of used torso rotation machine and give it 6 months? If your son's curve is stable or gets worse surgery might be his best bet. You can always resell his machine on craigslist. But if his curve starts moving in reverse like Martha Hawes this kind of simple PT could be an easy sollution.

A mom on this board sent me a personal message regarding a conversation she had with a female weight trainer. The woman had been in pain for years and was considering surgery. As a last ditch effort she gave strength training a try. To her amazement the pain and discomfort went away for good. That was years ago.

The other thing to consider is that in another 10 or 15 years there might be procedures available that are much more advanced than fusion. The internal spine brace is in development right now. I believe there are competing versions of this technology.

Internal scoliosis brace diagram (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365545/figure/Fig1/)

[hdugger]

Hi Dingo,

Is there a good non-machine approximation of that exercise? My son's in a dorm room in another state, so a big machine is out.

[Dingo]

hdugger

Sure, look up torso rotation video on google and there are lots of exercises.

In Dr. McCintire's study on torso rotation he included a simple home exercise for kids to do.

Tie an exercise band to a doorknob and sit in a chair with your BACK facing the doorknob. Hold the other end of the exercise band. Twist left and right and the exercise band provides the resistance. It's the same movement as the MedX machine except it uses an exercise band and a chair. Because you are sitting your pelvis stays locked in place and the paraspinal muscles do all of the work.

I talked to Dr. McCintire about this particular exercise and he seemed to like it a lot. I got the feeling that it's the next best thing to the MedX. Unfortunately my son is only 6 and he is too young and uncoordinated to do this exercise. We do a lying down version.

This is the study that the exercise comes from.
Treatment of Adolescent Idiopathic Scoliosis With Quantified Trunk Rotational Strength Training: A Pilot Study (http://journals.lww.com/jspinaldisorders/Abstract/2008/07000/Treatment_of_Adolescent_Idiopathic_Scoliosis_With. 10.aspx)

[Dingo]

hdugger

BTW this is from McCintire's abstract. The same thing was mentioned in the Vert Mooney study on torso rotation.


A normal female's trunk strength in flexion and extension decreases from her juvenile to adolescent years, whereas a male's increases.

I remember when I first heard that AIS hit teen girls 10 to 1 over boys. I thought it had something to do with hormones.

Whelp... maybe not. It could be as simple as muscle mass.

This study certainly points in that direction.

Relation between adolescent idiopathic scoliosis and morphologic somatotypes. (http://www.ncbi.nlm.nih.gov/pubmed/9383860)


Subjects with progressive adolescent idiopathic scoliosis are significantly less mesomorphic than control girls.

[mamamax]

Dingo - what do we know about torso rotation in relation to thoracomumbar curves? Anything?

[Karen Ocker]

A syrinx is a cyst in the spinal cord. I suggest consulting a neurosurgeon before embarking on torso rotation.

[hdugger]

A syrinx is a cyst in the spinal cord. I suggest consulting a neurosurgeon before embarking on torso rotation.

My Dr. (orthpedic surgeon) told us that the only things we had to avoid were car and skiing accidents. Is there a reason to think that simple actions would aggravate it?

[Dingo]

mamamax


what do we know about torso rotation in relation to thoracomumbar curves? Anything?

I don't think the type of curve matters. It seems to work for any curve.

[mamamax]

Thanks Dingo - taken at a gradient, the exercise band seems harmless enough - think I'll give it a try & see how it feels. I do remember that Martha used torso strengthening exercises from age 11 to 40 and experienced a long period of stability during that time. As for throacolumbar & torso rotation, yep looks like it could be helpful.



A preliminary report on the effect of measured strength training in adolescent idiopathic scoliosis.
Mooney V. Gulick , Pozos R. J Spinal Disord, 2000;13(2):102-7.

The authors studied 12 adolescent patients with scoliosis (10 girls and 2 boys) who were 11 to 16 years old and had curvatures ranging from 20 degrees to 60 degrees. Seven were right thoracic curves and five were thoracolumbar with double curves. When tested on the MedX Torso Rotation Machine, both sides were unequal in their torso rotation strength all patients. Myoelectric activity was asymmetric in both sides and in abdominal and paraspinal muscles of all patients. These asymmetries were corrected completely with torso rotation, which was associated with significant strength gains. Strength gains ranged from 12% to 40%. A 16-year-old girl with a 60 degree lumbar curve progressed and had surgery. None of the remaining patients progressed, and 4 of the 12 had decreases in their curvatures from 20 degrees to 28 degrees. None of the patients used braces during this study. http://www.spineandsport.com/foundation/Research/scoliosis.asp

[Dingo]

hdugger


My Dr. (orthpedic surgeon) told us that the only things we had to avoid were car and skiing accidents. Is there a reason to think that simple actions would aggravate it?

A little over 5 years ago I had a disc rupture in my neck. What was left of the damaged disc pressed on my spinal cord and caused constant phantom pain that ran down my right arm all of the way to my finger. The pain in my neck and arm was easily the worst of my life. A few months later I had a single level fusion that eliminated the pain completely.

Anyway... the first time I met my neurologist (before I had surgery) I asked him about options. He told me that I could try PT but he doubted it would help. I asked him if therapy was safe considering my condition. He told me that PT wouldn't damage anything but if a movement caused pain I should stop. I found his response somewhat amusing because I expected something more brilliant or insightful from a neurologist. Evidently even the smartest people haven't discovered a better course of action than "stop if something hurts". :)

I don't know if this advice about PT applies to a cyst in the spine (it might not) but it's my only experience with a severe back disorder.

[Dingo]

Mamamax


the exercise band seems harmless enough - think I'll give it a try & see how it feels.

Yep, it's essentially the same thing as a MedX but it costs practically nothing and you can do it at home. I think you can buy exercise bands with different resistances. McIntire mentioned that by pulling the band tight you can double the resistance... or something like that.

I tried it with my son but he couldn't move his body correctly. This exercise doesn't take a lot of coordination but it requires more than what a 6 year old has. My 8 year old son could probably do it with ease.

[mamamax]

Mamamax



Yep, it's essentially the same thing as a MedX but it costs practically nothing and you can do it at home. I think you can buy exercise bands with different resistances. McIntire mentioned that by pulling the band tight you can double the resistance... or something like that.

I tried it with my son but he couldn't move his body correctly. This exercise doesn't take a lot of coordination but it requires more than what a 6 year old has. My 8 year old son could probably do it with ease.

That's a good exercise Dingo! I used the exercise band & chair last evening before going to bed. Just did 10 reps and could feel the affect this morning and throughout the day. Was a little sore, but I swear I felt as if I was standing a little straighter (if it's a placebo effect, I'll take it).

Actually I'm as out of shape as an old lady can get, so it would not be unusual to feel the effects of just ten reps - and I think this exercise definitely targets the parspinals. Done as you suggested the rotations were quite small which my surgeon had said would be fine (vs long sweeping rotational exercises).

Isn't the real MedX routine done for about 15 minutes or so? I would imagine that really would create some soreness the next day. Since I'm older I'm going to continue with just 10 reps a day until I don't feel any affect, then I'll increase it. Also will be adding a Schroth exercise I've learned before and after - which basically elongates the spine.

I think you came up with a good one here and thanks again for posting the suggestion!

[Dingo]

Mamamax

Thanks but all of the credit goes to Dr. McIntire. :)

I believe the children in the studies used the MedX twice per week for just a few minutes each time. Maybe 5 or 10 minutes.


Was a little sore, but I swear I felt as if I was standing a little straighter (if it's a placebo effect, I'll take it).

My wife and I noticed a difference in Scott's back after a couple of weeks. At about the one month mark we knew for sure that something had improved. The biggest difference seemed to be a reduced rib hump or reduced rotation. Some of that improvement may have been extra muscle that evened out the appearance of his back, we dunno. But at the 6 month mark he measured a 10 which was a 1 degree improvement. I could have sworn that he improved a lot more but I'll take a -1 any day. Because he was stable we put off his next recheck for 1 year which will be his 7th birthday.

[tonibunny]

Hey Dingo,

It's fab news that Scott's back looks better :) I have questions - I'm not being critical, I'm genuinely curious! I think it's extremely encouraging that you can see a cosmetic improvement in his back, and that the curvature has not got any worse.

What's the Scoliometer degree of his rotation? I'm amazed that he has a rib hump at all with a 10 degree curve, but I guess that could only happen if he has a lot of rotation :confused: Is it at all possible that the x-rays have been measured incorrectly and that he actually has a larger curve?

This is an x-ray of a 10 degree scoliosis, and it's so difficult to see how it could cause a noticeable hump, especially one that is so prominent that you can discern a reduction. Logically it seems to me that any rotation would manifest itself in a slight imbalance rather than a hump:

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/images/lumbar.jpg


Also, how did the doctor measure a 1 degree improvement accurately, given that there is a 5 degree margin of error?

Toni xx

[Pooka1]

Also, how did the doctor measure a 1 degree improvement accurately, given that there is a 5 degree margin of error?


Toni, I think the surgeon just read the first and second radiographs and got numbers. I'm very sure the surgeon simply said, "No change." I think he would have said "No change" if the second reading was within +/- 5* of the first reading. Further, I would bet my house and in fact my entire net worth that the the surgeon did NOT say, "Improved curve" implying it is real... re-readings by surgeons are +/- 2-3* as far as I know. It can't be more exact than that.

Now in contrast to the surgeon's opinion, how lay parents interpret one degree decreases in curves is driven by emotions, not science or medicine and it is understandable. The main danger is when a kid is doing some type of therapy and that therapy is credited with the one degree decrease or any decrease in small curves in little kids. And in this particular case, the danger of other parents being mislead is off the charts as the lay parent is a true believer (TM) in the therapy absent any real evidence.

[Dingo]

Tonibunny

Scott's initial measurement by the radiologist was 12 degrees, his Scoliosis specialist called the same x-ray "10ish". So like you said there is a +/-5 degrees on every measurement.

Scott's rotation was pretty bad which I guess is lucky because if it wasn't they would have missed his curve. In his first and most recent X-rays Scott's spine was nearly straight, just like your example. His curve has always been hard to see even when I look closely but I can see his rotation through all but the thickest shirts. At shower time I try not to look at it because it makes my heart sink.

I should note that his 6 month X-ray did not look like your example. Between his initial diagnosis and first recheck his rotation had slowly spread from his middle back up into his thoracic region and down into the top of his lumbar area. When the doctor put the film up his curve appeared to have grown by about half or more. Then he looked at us and said it was 11 degrees. I couldn't believe it! I was overjoyed and mystified at the same time. I think the +/- 5 variation might have worked in Scott's favor that day.

We had started strength training about a week before his first recheck and we've been doing it ever since. 6 months later at his 2nd recheck I had no worries at all. His rotation was down and his curve was practically invisible. I wouldn't have been surprised if the doctor called it 5 degrees. He called it 10 and stable which was good enough for me. :)

[tonibunny]

Well, that's excellent news :) I think it would be fascinating to see Scott's x-rays if you would ever consider sharing them online (either privately or in a forum). The x-ray in my example is of a lumbar curve so I can understand how it might look a lot different to his, as of course there is little rib involvement.

How does his rotation present itself - does he have an actual rib prominence, does one side of his back appear slightly higher than the other, or is it more that his torso appears to twist to one side when he is standing straight in front of you? Do you have a Scoliometer reading for his rotation?

[Dingo]

tonibunny

Scott's right, rear rib cage is "fuller" and more prounounced. It's "bigger" than his left side. And of course if you look you can see that it's turned that direction. That's probably the best way I can describe it. We have never done a scolimeter.

BTW I have no problem putting Scott's X-rays up on this board. However I don't have them, they are at his Doctors office. Is there an easy way to get them into a computer?

[tonibunny]

Are the x-rays on film or are they digital ones?

For film x-rays, you can just take a photo when they are displayed at your doctor's office. For digital x-rays, take a memory stick (flash drive) along with you to your next appointment and beg the doctor to copy them across from his computer.

Once you have copies, you can host them on a website such as Flickr or Photobucket and then display them wherever you like. Just let me know if you ever want to do this and need a hand :)

There is a Scoliometer application for the IPhone, which I showed to my own consultant. He was really very impressed with its accuracy. It's called Scoliogauge if you have an IPhone and fancy giving it a go. DO be careful to measure at the apex of the ribcage prominence, and to only measure if you're sure the person is not leaning to one side (check their hands are level on their legs at the front). And obviously, this is no substitute for having the rotation measured by a real-life expert with a real-life scoliometer so don't take your own results as gospel! It can be a useful tool if you're careful with it though :D

[loves to skate]

Another way is to request a disc from the Radiology department. You usually have to fill out a request form and they will send you one. It is a good idea to have a copy of every x-ray, MRI and CT scan for future reference.
Sally

[Dingo]

For film x-rays, you can just take a photo when they are displayed at your doctor's office.

EEEeeeee... they are all regular film x-rays.


Another way is to request a disc from the Radiology department.

Scott has his next appointment in 9 months. I think when I go in I'll request a disk with all of his x-rays. I'll put em' all online. They'll cover age 5, 5.5, 6 and 7.

[mamamax]

Hi Dingo,

Is there a good non-machine approximation of that exercise? My son's in a dorm room in another state, so a big machine is out.

Would you also consider Schroth therapy? There seems to be more and more PTs getting certified in this and maybe there is one near your son's college?

[hdugger]

Yes, we had considered Schroth. The thing is, it seems like what he's doing now is helping, so I don't want to pull him away from that into some complete other thing. I could add little bits (like the torso rotation), but I don't want to interrupt what he's doing now.

[mamamax]

Yes, we had considered Schroth. The thing is, it seems like what he's doing now is helping, so I don't want to pull him away from that into some complete other thing. I could add little bits (like the torso rotation), but I don't want to interrupt what he's doing now.

That makes sense. I see he's working with message and exercise. Can you share with us what type of exercise and message? Very glad for you both that improvement is being seen & best wishes for continued good results!

[hdugger]

I wish I knew :)

For the massage, he's going to my massage therapist who is doing "theraputic massage," whatever that means. I'd describe it as deep tissue with a good amount of knowledge and thought on her part. She's also given him a set of stretches. The massage and the stretches are meant to do two things - move his shoulder blade to the left and down, and move his head farther back. She feels like alot of the positive change we've seen in his appearance has to do with not carrying the weight of his head so far forward. And I do realize that that's straying a little into Clear territory, but it seems to be working for him.

The physical therapy is mainly core exercises, with a few stretches where he lies down and puts a pillow under his shoulder blade and then stretches his arms backwards.

But, all of this is very much tailored for his particular curve which is high and which also includes a good deal of kyphosis.

If it significantly reduces his curve (so, according to my standards, his curve would go from the 63 degree reading for his 1/2009 xray to 53 or below) I'll post the whole set of exercises here and see what they might have in common with other successful methods. So far, he's 6 degrees down, so 4 more in the right direction would be "success" in my book. And that 6 degrees is with him being *very* erratic about exercising. OTOH, that might just be a margin of error and he could be at 67 the next time.