Scoliosis treatment

[Harriet Vane]

From time to time a thread comes up about scoliosis, and I usually chime in. However, what I have to offer is usually brief. Some folks have asked further questions via pm, so I thought I would toss out my experience in the hope that it will help someone. It is long, but I truly hope this can help some of you who have children struggling with scoliosis.

 

I was originally diagnosed with scoliosis in junior high. The curve was minor, and the dr (a gp) recommended just keeping an eye on it. He also encouraged me to not hunch when reading. So, we did nothing.

 

In high school I was fairly athletic, participating in both basketball and track teams as well as volleyball for fun regularly with friends.

 

At age 22, I was in a minor car accident in which I hit my head and experienced whiplash. I was initially given muscle relaxers and told it would be better in a few days. It wasn't. After several months, with constant pain, I finally went to see an osteopath, who recommended physical therapy. I was also at this time diagnosed with bone spurs on my spine, and told that the scoliosis was definitely part of why I was experiencing pain. I also started to experience periodic, positional hand numbness (meaning my hands go slightly numb in certain positions).

 

PT #1--Therapy mostly ice, massage, and very gentle stretches. Absolutely ineffective. Every time I asked about participating in various activities, they cautioned me to be careful and to hold off. I felt like an old woman. It was horrible.

 

PT #2--Longer massages with quite a bit more exercise and stretching. After just a few months of the more aggressive exercise and so forth, I was PAIN FREE. This PT also encouraged me to engage in ANY sports or activities I wanted. I was sooooo thankful to be free of pain and active.

 

Fast forward 6 or 7 years. I was completely out of shape with a five year old daughter and 1 year old baby. Rolling over in bed to hit the alarm, my back seized up and I was in excruciating pain.

 

PT #3--Even more exercise than PT #2 (though very similar overall), plus a little massage and electric stim. Everything got much, much better, but not quite all the way. After six weeks I added in a chiropractor. This chiro was also a certified massage therapist as well as certified athletic trainer. She worked well with my PT and a month later I was in GREAT shape. Even my asthma improved.

 

Fast forward ten years. You'd think I would learn by now, but life has been busy and VERY intense. I had some very, very hard years as someone dear to me was struggling with a brain tumor. I knew I should keep up with the scoliosis exercises, but had fallen badly out of shape again. A fall on my stairs, followed by two moves, threw my back out really badly and I was in terrible pain, daily, again, with one shoulder riding higher than the other.

 

PT #4--Some exercise, but not as much as PT#3. Over the course of a month I kept expecting her to add more exercise in, but she did not despite my continued assurances that I wanted to work hard. Also lots of massage (which would help for a day or two) and electric stim. Then one day the PT attempted traction with a machine, and suddenly everything was REALLY BAD. My pain was bad, and worse, my hands were falling asleep waaaaaaaay worse, and waaaaaaaay more painfully, and waaaaaaaay more often.

 

Full scale panic ensued. An MRI showed that in addition to the scoliosis and bone spurs, I also had a bulging disc. The hand numbness was attributed to both the disc and to two vertebrae that were compressed right in the same area, as well as the bone spurs. I switched PTs.

 

PT#5--Massage, stim, heat (though we switched to cold and have done better with that) and most importantly, TONS and TONS of exercise. This PT expects triple what any other PT has ever asked of me. I now have biceps of steel, lol. What has amazed me is that my hands right now are better than they have been in almost two decades. I have lived with light hand numbness for almost two decades, and at this point that almost never happens. I never expected this level of improvement, and I worship the ground my PT walks on.

 

Lessons to take from my experience:

 

The worst possible thing to do with scoliosis is to do nothing.

 

Strong muscles help the back be as straight as it can be, and strength helps keep pain at a minimum.

 

A little exercise will help.

 

What helps even more is a lot of exercise. I have been doing a lot of strength training for my back and arms and pecs. The result is that I can stand up straighter and it doesn't hurt. I can also turn my head normally.

 

When I say a lot of exercise, I mean that I do a minimum of 30-60 minutes of specific strength training and stretches 5-6 days per week. I work hard and get sweaty.

 

Also, I have found that chiropractic care helps. However, I have definitely found that when I am out of shape, I am not strong enough to "hold" the adjustments well. I like doing both pt and chiro. If I had to choose one, I would say that PT has been by far the most helpful.

Edited May 25, 2012 by strider

[BrettW]

Strider,

Thank you for this post about scoliosis. I'm sorry to hear of all of your difficulties and pain. I, too, have scoliosis. I was diagnosed in middle school and had spinal fusion surgery with Harrington rods at age 13. I'm now 42 years old and I've never had any pain or further problems related to scoliosis.

 

My concern is now for my daughter. She's 10 and she's already showing signs of it. Her shoulders and shoulder blades are uneven. When she was 7 I took her to the Children's hospital for baseline x-rays. I've taken her every year since. Her curve is still small, 10 degrees or so, but it's there nontheless and its progressing. With my history of scoliosis, they said they want to see her every six months. I asked if there's anything we can do in the interim periods (like exercises to strengthen back muscles) and they said that scoliosis is generally genetically predisposed and that when puberty kicks in, the scoliosis will take it's course regardless of exercise/diet, etc... This makes me feel so helpless. It seems like no advancements have been made in scoliosis treatment/prevention over the last 30 years. So sad.

 

Any advice/suggestions?

 

Brett

[mamakim]

Hunh.

 

I'm getting the tingling hands/fingers thing now, too, and have noticed pain that goes along with the rotational zone of my scoliosis. Chiro care in the past has been just pain-oriented as you describe, and maybe a few mild exercises. I just got a copy of my medical records a few days ago to try to figure out some stuff about the cancer, but noticed a note from the MRI that there's degeneration of the spine at the lumbar curve as well.

 

Well . . . blah, blah, blah to say you've got me at an "all ears" point.

 

Do you do any specific exercises, or are these generic back/arms/pec strengthening exercises? Is it all lifting you do? You said stretching as well, again, anything specific to recommend?

[Sandragood1]

Strider,

 

Thanks for sharing your experiences. I think I need to look for someone to create an exercise program for dd and then follow up on a weekly or bi weekly basis.

 

The cost is going to be high. I guess that is what has been holding me back. Insurance won't cover anything unless a doctor prescribes it. Sigh.

 

This will be our next project.

 

Sandra

[Harriet Vane]

Do you do any specific exercises, or are these generic back/arms/pec strengthening exercises? Is it all lifting you do? You said stretching as well, again, anything specific to recommend?

 

Some of the exercises I do are specific to the pain and mobility challenges I personally face. That's why a physical therapist can be helpful--a good pt can design a program that is specific to your health challenges.

 

However, I do understand that pt is expensive and not everyone has the freedom that I have had to pursue this.

 

The stretches that I do are primarily for the upper spine and neck, because that is where the bone spurs and vertebrae compression are. I have an S-curve, but most of the pain is in the upper part of the S, and I have a chronic pattern of muscle tension in the neck and upper back. For these reasons, I personally do a ton of exercises and stretches focused on this area.

 

There are some exercises that I have done more consistently over the years that seem to help:

 

--Arm bike (tabletop models are not as good but can be purchased at lower cost).

 

--Using a stretchy band hooked around a door knob. start with hands out, together, in front. Keeping elbows tucked close to the body, pull in, squeezing shoulder blades together. These can also be done one side alone, squeezing shoulder blade towards your spine.

 

--Paddling a canoe. I mimic this sitting on an exercise ball and using a stretchy band. This focuses more on the trunk and arms, less on the upper spine.

 

--Lay face down either on an exercise ball or on the floor. If on the floor, use a rolled-up washcloth to support your forehead so that your head is straight. Do arm lifts three ways: with arms out perpendicular to body, palms down, squeezing shoulder blades; with arms extended above head, palms down; with arms laying at sides, hands by hips, palms up.

 

--Various kinds of pushups. If these are challenging, do them standing against a wall. I have done normal pushups against a wall or on an exercise ball, but also funny ones with my hands behind me, grasping the arms of a chair and pushing up in that position.

 

I also do a fair amount of weight lifting.

 

If you have specific pain or mobility challenges, PT is your best option. If you have no pain or mobility challenges but want to be proactive, then I would say to do the above exercises because they support the spine but also add in a good amount if weight training and some form of aerobic exercise like swimming, basketball, or even volleyball (something that focuses on upper body strength).

Edited May 25, 2012 by strider

[Harriet Vane]

Strider,

Thank you for this post about scoliosis. I'm sorry to hear of all of your difficulties and pain. I, too, have scoliosis. I was diagnosed in middle school and had spinal fusion surgery with Harrington rods at age 13. I'm now 42 years old and I've never had any pain or further problems related to scoliosis.

 

My concern is now for my daughter. She's 10 and she's already showing signs of it. Her shoulders and shoulder blades are uneven. When she was 7 I took her to the Children's hospital for baseline x-rays. I've taken her every year since. Her curve is still small, 10 degrees or so, but it's there nontheless and its progressing. With my history of scoliosis, they said they want to see her every six months. I asked if there's anything we can do in the interim periods (like exercises to strengthen back muscles) and they said that scoliosis is generally genetically predisposed and that when puberty kicks in, the scoliosis will take it's course regardless of exercise/diet, etc... This makes me feel so helpless. It seems like no advancements have been made in scoliosis treatment/prevention over the last 30 years. So sad.

 

Any advice/suggestions?

 

Brett

 

This is typical. Frankly, most drs I have talked to or my friends have talked to say this as well. Please do not think this is a rant against drs--it is NOT. I have friends that I like and respect as drs and have been very, very thankful to have good drs. However, I would say that most drs do not understand physical therapy very well. There is a huge disconnect between the disciplines, unfortunately.

 

It is just common sense that the stronger the back muscles are, the straighter and healthier the back will be, and the less pain. That certainly has been my experience.

 

The amount of improvement I can get with exercise to both mobility and pain is significant. What I didn't include in my post is a description of my daily "normal." For the last two decades, I have had light positional hand numbness, pain in the upper spine and especially the neck, and difficulty/pain turning my head to the left. This is all due to MILD scoliosis that degenerated over time to include bone spurs, vertebrae compression, and a bulging disc. Most of my drs have described my struggles as "not that bad" because the curve of my spine is not huge and because I do not need surgery. I have found it frustrating and discouraging to have pain daily due to something that is "not that bad." My experience with PT, especially the one with whom I am working currently, is that exercise has completely changed that daily reality.

[Mom22ns]

I had the Harrington rod surgery, too, when I was 12, back in 1974. My sister had hers in 1968. Was yours done at Texas Children's in Houston?

 

My sister had this too in the late 70s when she was 15. While I have scoliosis, I was a competitive gymnast and mine never got as severe. The doc & my family all saw the strong flexible back as a possible reason. Both of my sisters kids have scoliosis, but neither of mine do so far.

 

Brett, you are lucky you have no complications from the spinal fusion. My sister, 49 has constant back pain, arthritis and degeneration from the spine's lack of flexibility. It was great for the first 20 year, but has gotten rough in the last 10

Edited May 25, 2012 by Momto2Ns

[higginszoo]

This is exactly what my chiro has recommended for my boys (with the backing of their pediatrician and both of their orthopedists -- one at Shriner's Houston and one local). Lots of exercise, some massage, and some minor chiro adjustments. So far, neither has had any progression -- they were each diagnosed at age 7-8, and at 11 and almost 14 -- so we have a while to go, but everyone is saying to keep doing what we're doing, because it seems to be working -- massage, chiro, Tae Kwon Do (active, with lots of stretching), and swimming seem to be a good combo (along with all of the activity that Scouts, CAP, etc. add).

[SonshineLearner]

Thanks for the post :) I posted, and I think you commented on that thread. My daughter is going next Friday to the Children's Hospital here. I'm not sure what kind of regimen they'll "prescribe/suggest". I do know she'd love massage to be included :) She dances 4x a week. Next year she's been accepted to the Dance team with is 4x a week and then she'd like to take 7 classes:) Too bad she won't have that much time.

I've been depressed the last few days about not knowing until now, with the end of her growth coming soon :( But, I do think that doing dance must have helped... or at least not hurt... (Hers is a 24 degree curve) I will have my son checked when he's much younger... I found out only because my daughter had a sport's check-up. :(

[Scuff]

So, how did you find your awesome pT, or was it trial & error? Our insurance covers it, and i do have a script to go for my knee. I hate finding health care professionals. It seems very hit or miss.

 

I have an S curve in the upper 40s. I had an HMO as a kid, so my drs changed a lot. I almost had surgery 3xs, but each time it was delayed by drs leaving the HMO and then the new dr wanting to wait further. Last time I went was in my early 20s. Seemed kinda pointless at that point. I've had a lot of pain. Mostly in my lower back, with muscle tightness in my mid-back. It was quite depressing to be in such pain so early in life. (if I feel this way at 30, how am I going to survive to be 60+?) i've been going to a chiro consistantly for the past 5ish years. I <3 her. She gave me back hope. I still have trouble spots that go out between visits, but I don't have the debilitating, constant pain that i had. I do pilates off and on and do notice quite a difference. I have thought for awhile that I should do something to help my back get stronger and hold adjustments. Never had a massage, though it sounds heavenly.

[Harriet Vane]

So, how did you find your awesome pT, or was it trial & error?

 

In my case, it has been trial and error. However, I can offer some thoughts.

 

PT is gaining popularity, and I have seen it offered in numerous settings such as a chiropractor's office. In fact, a chiropractor that I saw in the past claimed to offer PT. However, what that chiropractor offers is NOT PT as I understand it--that office offers electric stim and 2-5 minutes of massage with the adjustment.

 

So first lesson--not everything that is claimed to be physical therapy is actually physical therapy.

 

Also I have found that each and every PT I have ever spoken with will claim to offer exercise-based therapy. However, in actual practice there is a wide range of understanding on what is truly exercise-based therapy. In my experience, most PTs offer a range of exercise and stretching but not as much as will provide the MOST benefit, as well as comfort measures like electric stim, massage, heat or cold.

 

What frustrates me is that it takes a few visits to figure out if the PT is any good or not. There has been one notable exception to this in my own experience. My current PT's initial evaluation of my condition was noticeably more thorough than any other PT I have had, and each and every appointment with her has been jam-packed with both exercise and comfort measures. Her evaluation and treatment of me stood out as exceptional from the first. The other noticeable difference with my current PT is that she is very, very responsive to me. She is quick to notice if something is not having the desired effect and will alter the exercise if need be.

 

In general, I have noticed that hospital programs and/or programs that work with a large population of elderly or with the chronically ill tend to be less aggressive in their exercise regimen.

 

Two organizations that I have had luck with are Athletico and BodyWerks, with BodyWerks being by far the best I have ever had. It's not just my individual PT, either (though she is a gem)--the company itself embraces aggressive exercise therapy. I have NO ties to this company except having received benefit for my condition--I am happy to mention their business because they have helped me so very, very much.

 

Final lesson--you should expect to work HARD for improvement. It is normal to start more gently and go up from there. I have had the most improvement when I am pumping hard between 30-45 minutes and have actually worked up a bit of a sweat, at least a couple days a week.

[Tiramisu]

Thanks for the post :) I posted, and I think you commented on that thread. My daughter is going next Friday to the Children's Hospital here. I'm not sure what kind of regimen they'll "prescribe/suggest". I do know she'd love massage to be included :) She dances 4x a week. Next year she's been accepted to the Dance team with is 4x a week and then she'd like to take 7 classes:) Too bad she won't have that much time.

I've been depressed the last few days about not knowing until now, with the end of her growth coming soon :( But, I do think that doing dance must have helped... or at least not hurt... (Hers is a 24 degree curve) I will have my son checked when he's much younger... I found out only because my daughter had a sport's check-up. :(

 

I think the dance is a great idea. Our surgeon has a patient who was a dancer and was back on stage dancing 3 months after her scoliosis surgery. I think he's awesome but I think it was her strong body that made such an amazing recovery possible. In your dd's case, let's hope it will prevent any need for surgery. :)

[BrettW]

I had the Harrington rod surgery, too, when I was 12, back in 1974. My sister had hers in 1968. Was yours done at Texas Children's in Houston?

 

 

I had my scoliosis surgery at the Hospital for Special Surgery in New York City in the early 80s.