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I also have scoliosis and was diagnised as a child. I wore a whole

body cast for 2 yrs and 4 mos and a corset brace for 2 yrs.

Beginning in 6th grade.

I was diagnosed with CMT after a pregnancy but I think I probably

had a few symptoms from a child.

Barbara

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Thanks Gretchen, I am amazed at how much you do/have done for this group.

You are full of knowledge. Thanks so much.

Barbara

BKay1941

> Barbara, you might find this interesting. Unfortunately, there is no

> date on this piece, but it was in one of the newsletters. ~ G

>

>

> Scoliosis in CMT Disease

> by Dr. Kamal Ibrahim MD, FRCSĀ©

>

> Scoliosis is a side to side or lateral curve of the spine. Sometimes

> this side curve is very slight and can hardly be seen. In more severe

> cases, however, the spine begins to look like a letter S or a long C.

> The patient with true scoliosis may appear to slump or lean to one side.

> This should not be confused with poor posture which corrects easily when

> the patient simply stands up straight. When a patient with scoliosis

> stands as straight as possible, the back is still not straight.

>

> In Charcot-Marie-Tooth disease, there is a muscle imbalance due to an

> inherited

> condition affecting the nervous system. As a result of this muscle

> imbalance, scoliosis

> could develop and continue to progress.

>

> Very little is written in the literature about scoliosis and

> Charcot-Marie-Tooth disease, therefore this report is a result of review

> of the literature and my personal experience.

>

> The incidence of scoliosis occurring along with Charcot-Marie-Tooth

> disease is

> about 10 per cent. That is to say, out of 100 patientss, 10 may develop

> scoliosis. If the scoliosis occurs, it usually starts late in the first

> decade of life or in teenagers. Half of those patients with scoliosis

> and CMT will have a small to moderate degree of scoliosis which usually

> does not progress and will not need any significant treatment while the

> other half of the patients will have scoliosis which will progress

> quickly and may end up needing surgical correction. This course of the

> disease behaves somewhat similar to scoliosis in normal teenagers.

>

> Very little information is available in regard to scoliosis in adults

> with CMT. From my experience, I believe that it will not occur in adults

> de nouvelle, but usually it is a progression from adolescent scoliosis

> which was not treated and continued to progress to a very significant

> degree.

>

> KYPHOSIS ( " Round Back " )

> If the backward or rounded curve in the upper spine when viewed from the

> side is too great (round shoulders or humped back, a condition called

> kyphosis is present. When the inward or forward curve in the lower back

> is too great the condition is called lordosis (swayback). Many patients

> with scoliosis have kyphosis and lordosis as well.

>

> Kyphosis or excessive round back, sometimes called Scheuermann's

> disease, is a common problem. It has to be distinguished from poor

> posture. It is best seen in the

> bending test. When the child with kyphosis bends forward there will be a

> sharp bend or angulation of the back instead of the expected smooth

> curve.

>

>

> DIAGNOSIS

> Children should be checked regularly every year, even by their parents.

> The child should be asked to stand straight and the observer should look

> at the child's back to notice any uneven shoulders or one shoulder blade

> being more prominent, or the space between the body and the arms are

> unequal, the hips may be uneven one appearing higher or more prominent

> than the other, or if the child has some difficulty in clothes fitting

> properly or having to adjust the hem of a skirt or slacks. When a person

> with mild scoliosis bends at the waist, the sideways curvature of the

> spine becomes more obvious and would appear as if there is a hump in the

> back. That is to say one side of the back is higher than the other side.

> If any of these findings are observed by the parents, then the child

> should be examined by a physician and X-rays should be taken and

> repeated every year or more frequently if the scoliosis shows

> progression and is getting worse.

>

> TREATMENT

> Treatment modalities in those patients and the result of treatment is

> again similar to those of normal children who have scoliosis.

>

> If the curve is very mild, then the child should be observed. If he does

> not show any progression, then no treatment is needed. Exercises have no

> rule in correcting scoliosis, although back exercises are generally good

> for the well-being of CMT patients. If the curve shows progression and

> it is of a moderate degree, then a brace can control the progression

> until the child matures which is around 14 years for girls and 16 years

> for boys. Brace treatment is successful to achieve these results about

> 80 per cent of the time. There are many kinds of braces used for

> scoliosis, but generally they are divided into two groups, braces which

> go all the way to the neck and braces which stop under the arm. Each

> type of brace is used according to the part of the spine that has the

> scoliosis.

>

> On the other hand if the scoliosis shows sudden and fast progression

> toward a significant curve above 40 degrees, or if the brace treatment

> is unsuccessful in controlling the scoliosis, then the advised treatment

> is surgical correction of the scoliosis with fusion of the part of the

> spine that is curving.

>

> The technique that is used now for this surgery involves inserting

> stainless steel rods in each side of the spine, hooked to the spine with

> multiple hooks. This way the curve can be corrected to a great extent

> and fused in that position so the scoliosis does not come back. This

> surgery is now performed with a great degree of safety using a

> state-of-the-art technique which is known by the name of

> Cotrel-Dubousset internal fixation. With this new technique patients

> usually leave the hospital after one week from surgery without any cast,

> brace or external support with great results and a high success rate.

> The same techniques of surgery can be used for adults with scoliosis to

> correct their curve and prevent further deterioration of the spine.

>

> In patients older than 50 years with very severe scoliosis, this surgery

> might be risky and full of complications. Their symptom, which is

> usually back pain, can be relieved with a body brace to work as an

> external support to decrease the range of motion of the back, this way

> the pain could be relieved.

>

> The complications of untreated, progressive scoliosis occur mainly in

> late adulthood and are back pain and problems with heart and lung

> functions.

>

> SUMMARY

> In summary, scoliosis in CMT should be detected early in children during

> the first and second decade of life and watched carefully. If it does

> progress, then treatment should be implied in form of bracing or

> surgical correction and fusion. For adults who have curves beyond

> surgical treatment, they can be helped with a body brace, and if they

> are using a wheelchair, then some scoliosis modification in the back of

> the chair would be advised to help provide more comfortable seating and

> prevent excessive back pain so that those patients will be able to deal

> with daily living activities.

>

>

> http://www.cmtworld.org

>

> http://www.neurologychannel.com/charcot/

>

>

>

>

>

>

>

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