Torticolliskids.org

Surgery is needed in a VERY small number of children.  It is a last resort if no improvement is made through conventional physical therapy. Children are usually at least 18 months old and unsuccessful in an aggressive stretching program before surgery is considered.  We have a question and answer section here with the moms of two boys who required surgery.

Their stories, advice and thoughts are below. 

1. Why did you decide to do surgery?
    
2. Is it true that children who are not resolved by one year of age will need surgery?
    
3. Please describe the procedure.
    
4. What was the period post-op like? Will my child have to wear a neck brace?
    
5. How effective is the surgery and will it make the tilt disappear?
    
6. Will the torticollis reoccur?
    
7. What does the scar look like?
    
8. Was it worth it?

Mom 1: My son was diagnosed with torticollis at three months of age and started pt right away. He did not respond well to pt and had limited range of motion and a 12-17 degree tilt. He was 2-1/2 years old when he had surgery.

Mom 2: My son was diagnosed at 7 months of age with severe congenital torticollis. He did not respond to p/t and home stretching. At 18 months of age he had a bi-polar z plasty to release and lengthen his SCM muscle.

Orthopedic surgeons will generally recommend surgery for a child over 1 yr old who has not responded to pt and/or has considerable facial asymmetry. Children who are responding well to pt will probably not need surgery. Several children in the torticolliskids group achieved full ROM by one year but it took several more months to straighten out the tilt. If you are seeing constant improvement with pt, the general consensus among the group it to continue with pt until at least 1½ yrs old.

On the other hand, if your child still has very restricted range of motion after a year of pt, the muscle might be fibrotic and you may need to consider surgery. A fibrotic muscle has tough fibrous portions mixed in with the healthy muscle tissue. The fibrotic portions will not give, no matter how much you try to stretch the muscle. Surgical release is performed to remove these fibrotic portions, allowing the remaining healthy muscle tissue to respond to pt afterwards. Some surgical procedures also lengthen
the muscle, in addition to release.

We are aware of three different procedures. All three are fairly simple (as far as surgery goes) and take about 1 hour. The patient is usually kept overnight in the hospital for observation.

In general, all three procedures are performed to release the SCM, and in the case of the bipolar z-plasty, the muscle is also lengthened. The childs head will be moved through a full range of motion before closing the wound to make sure all restricting bands have been released.

1. Inferior open tenotomy of the SCM. A single incision is made along the skin folds of the neck about 1 cm above the clavicle. The sternal and clavicular heads of the SCM are released, as well as fascia and other structures that may be restricting motion.
2. Bipolar z-plasty. Two incisions are made: one below the ear on the affected side and another along the collar bone. The SCM muscle is cut apart in a "Z" cut and then re-attached.
3. Plastic surgeons have developed endoscopic procedures for surgical correction of torticollis. The incision is made behind the ear and leaves no noticeable scar.

More detailed information about surgical procedures can be found in the article "Endoscopic Surgical Treatment for Congenital Muscular Torticollis" by Fernando D. Burstein, M.D. and Steven R. Cohen, M.D. Discussion by Francis G. Wolfort, M.D. Plastic and Reconstructive Surgery 101:20-26 (January 1998). Drs. Burstein and Cohen describe an endoscopic procedure, and Dr. Francis Wolfort discusses other surgical options.

Mom 2: My son was in traction the first 24 hours post op. This was the most difficult time for him. After the 24 hours, he was fitted with a soft cervical collar that was worn 24 hours a day, taken off only for p/t, stretching and bathing. We began stretching 24 hours post-op. We resumed p/t 1 week later. He wore this collar for 2 1/2 months post op.

Mom 1: My son was not put in traction and did not use any kind of brace until a week after the operation. I really think this was a mistake, and it would have helped immensely to brace his neck before leaving the operating room. He wore a stiff orthopedic collar (Thomas-type) during all waking hours (except for bathing and stretching) for 2 ½ months after surgery. We started daily stretching about one week after surgery.

Surgery is not a quick fix. The child should have full ROM after surgery, but the tilt may remain. Further pt is important to stretch the muscle and maintain the full range of motion. Although we have heard of some cases of spontaneous recovery, we have both had to continue daily stretching to maintain flexibility and our children still tilt to some degree.

This is unlikely if you keep your childs neck mobile by stretching and doing strengthening exercises.

Its important to massage the scar daily starting about 2-4 weeks after surgery to promote healing and prevent adhesions. Our pts recommended vitamin E oil or Mederma  scar cream.

Mom 1: My son's scar is in the natural skin fold of his neck, so hopefully it will be barely noticeable after healing is complete. Three months after surgery, it is still slightly red and a little thick in the middle, but it seems to be disappearing.

Mom 2: My son's scars are each about an inch long and now, 7 months post-op, they look like scratches. You can not really notice the one below his ear at all.

Mom 2: YES!! He still has about a 5-10 degree tilt, however he has full ROM. His coordination has greatly improved and he doesn't lose his balance at all anymore. Prior to surgery he was constantly falling down because his balance was so off. We call him our little Tonka now because nothing holds him back.

Mom 1: Definitely. Although my son still has a lot of work to do to change his habitual posture, he is really enjoying his new freedom of movement. He is discovering daily all the new things he can do.