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Is there someone I can talk to who has scoliosis?

Dr. Robert S. Pashman

Los Angeles, CA

Discovering that you have scoliosis can be frightening. Once patients understand that curvature of the spine is not rare (approximately three percent of the population has a curve of 10 degrees or more), they become resigned to being followed by a qualified physician to monitor any chance of progression. Information about scoliosis and its many variants is readily found in bound reference material and on the Internet. The primary source of information on scoliosis and curvatures of the spine should be obtained from a qualified orthopedic spinal surgeon. Many patients find, however, that speaking to another individual of similar age who is also dealing with a first diagnosis or treatment of scoliosis can be comforting. In my experience, patients especially appreciate speaking to other patients about their post-operative experiences. In many instances, routine activities of daily living in the post-operative period are best communicated between patients. In my practice, if the patient is scheduled for surgery, we arrange for other patients under our care to speak to them about these matters. All over the country, and in most communities, there are scoliosis organizations that have meetings and provide mechanisms for communications amongst their members to discuss common experiences and matters related to scoliosis. These organizations include the National Scoliosis Foundation, Inc. (www.scoliosis.org), and the Scoliosis Association, Inc. (www.scoliosis-assoc.org).

Dr. W. Christopher Urban

Glen Burnie, MD

There are many resources that patients can use to interact with others who have scoliosis. This website has several patient stories that provide useful information on what it is like to have scoliosis and to undergo treatment. There are also national support groups for scoliosis patients. In addition, many surgeons have patients who they have treated, and who are willing to speak about their scoliosis. It is important to speak with others who have been treated both surgically and through bracing.

Dr. Robert W. Molinari

Rochester, NY

Contact my office and we will put you in contact with someone.

Dr. Baron S. Lonner

New York, NY

Scoliosis affects approximately two to three percent of the pediatric population. Therefore it is not all that uncommon. Approximately one tenth of this group requires treatment either in the form of bracing or surgery. Some moderate curves in children become painful and progressive in adult years. In our practice we have a large number of patients under care for bracing and who have undergone surgery. Many of these individuals are willing to speak of their experiences with other patients. We routinely expedite this. Additionally, there are a number of outreach groups, composed of individuals who have scoliosis or who have family members with scoliosis. These foundations have been established to disseminate information and to provide support to patients who are afflicted with scoliosis.

Dr. Thomas G. Lowe

Woodridge Orthopaedics & Spine Center, P.C.

I think that any office that frequently treats patients with scoliosis would be more than willing to give you the names of some people in your age group that you could speak with about scoliosis. Most patients with scoliosis are very open to discussing the problem with other people, so it really should not be a problem.

Dr. Frank J. Schwab

New York, NY

Once you have seen a specialist, and scoliosis is diagnosed, you can ask your doctor if you can talk with another patient having the same condition. Most spine specialists can place you in contact with another patient. There are also support groups and scoliosis organizations in many regions of the country that can help you speak with another scoliosis patient.

Dr. Stephen Ondra

Chicago, IL

Yes, we see many patients with different types of scoliosis. Most spinal deformity surgeons, including our group, can link you with a patient that would be willing to talk with you about their problem. A quicker and easier way to do this is by linking to the chat rooms in the Iscoliosis.com website. There are also support groups in many areas of the country. Northwestern University hosts one.

Dr. John T. Smith

University of Utah Department of Orthopaedic Surgery

Through this site we have collected the experiences of many children, just like you, who have scoliosis. They are sharing their experiences with you through this site, and it is our hope that this will make it easier for you to understand how scoliosis is treated.

Dr. David W. Polly, Jr.

Minneapolis, MN

There are a lot of people who have scoliosis. There are 2 national support groups for patients, the National Scoliosis Foundation and the Scoliosis Association.

Dr. Scott J. Luhmann

St. Louis, MO

Yes, the spine surgeon or pediatric orthopaedic surgeon can usually identify other individuals in their practice with scoliosis who would be willing to discuss the issues of scoliosis on a first-hand basis.

Dr. James Mooney, III

Detroit, MI

Your orthopaedic surgeon should have patients available for you to talk to who have had treatment including bracing and/or surgery for scoliosis. Be sure to ask them for the opportunity to talk to these other patients.

Dr. Charles E. Johnston, II

Texas Scottish Rite Hospital Orthopedic Group

Your physician should be able to put you in contact with another patient who has a similar problem.

Dr. Jean-Pierre C. Farcy

New York, NY
M.M.C. Spine Center

Yes and beside people you may know there is usually a chapter of the Scoliosis Association nearby where you can find someone to talk to. The scoliosis specialist to whom you will be referred to may give you a patient to contact.

Dr. John P. Lubicky

Chicago, IL
Shriner's Hospital for Children

Sure. Once you see a scoliosis doctor, he or she can give you the name and phone number of one of his or her patients so that you can discuss the topic with them. This is probably the easiest way to make contact. However, others at your school, neighborhood or church group may have had scoliosis, and if you can identify somebody in one of those situations, you should feel free to talk to them as well.

Dr. Dennis G. Crandall

Mesa, AZ

Receiving the diagnosis of scoliosis can be frightening at first. We keep a list of scoliosis patients we have treated, including all ages and types of scoliosis, who are willing to talk to new patients. Other resources include support groups such as the Scoliosis Association, and the chat room on iscoliosis.com.

Dr. Christopher L. Hamill

Buffalo General HospitalBuffalo General Hospital

Yes.

The commentary above recounts the experiences of these physicians. Medtronic invited them to share their stories candidly. Keep in mind that results vary; not every patient's response is the same. Talk with your doctor to learn more about any products that are mentioned above.

It is important that you discuss the potential risks, complications and benefits of spinal surgery with your doctor prior to receiving treatment, and that you rely on your doctor's judgment. Only your doctor can determine whether you are a suitable candidate for this treatment.

  • Published: June 20, 2002
  • Updated: April 19, 2010