Ventilator-Assisted Living©

Winter 2002, Vol. 16, No. 4


Body Brace

Julie Levine

Since June 1994, following the removal of a brain stem tumor, I have been an incomplete quadriplegic. I use BiPAP® at night, but breathe sufficiently without assistance during the day. I have tried several different masks, but always return to the Monarch™ Mini mask (no longer manufactured by Respironics). It provides me with the best ventilation, least leaks, and minimal amount of pressure on my face.

Over a period of time after my surgery, it became increasingly difficult to hold up my head. By 2000, my condition became chronic, and I developed swan neck syndrome; the cervical spine in the C-3 to C-5 region was curving in the shape of a swan’s neck. After several surgical consults, I found a surgeon I felt confident could fuse my neck and, on November 6, 2000, after 10 hours of surgery, Duncan McBride, MD, of UCLA Medical Center, successfully fused my neck.

Upon awakening after the surgery, I discovered that my breathing was greatly improved and not labored. This was an unexpected plus. It seems the surgery relieved pressure on a nerve that affected my breathing.

photo of Julie LevineI wore a brace on my torso and neck for three months after the surgery, to guarantee a solid and successful fusion. However, after the removal of the brace, it became apparent that my head was turned to the right and tilted left. My spine was fused perfectly straight yet I was tilting. I was thrilled with the unexpected improvement in my breathing, but perplexed with the tilting of my head. The cause of the tilting was attributed to extreme atrophy of the sternacleidomastoid area on the right side of my neck. I remained this way for the next two years hoping my head would straighten out over time.

Then I began to search for an orthotics specialist. I met with many orthotists but none was able to correct the problem. Several suggested surgery to weaken the muscle on the other side or to fuse my head to my neck, neither of which choices appealed to me. Eventually I decided to search for Jan Krzeminski, CO, who had made a torso and leg brace for me five years ago.

I found Jan at Johnson’s Orthopedics (7254 Magnolia Avenue, Riverside, CA 92405, 909-785-4411). After meeting with Jan and his associate, Michael Moncovich, CPO, my condition was diagnosed as torticollis, a contracted state of the cervical muscles with torsion of the neck. Generally this condition is found in children and is difficult to correct. When torticollis occurs in an adult, the correction is more challenging. Jan and Michael created a design that kept my torso stable with an attachment to straighten my neck. Their main concern was to correct the head alignment without creating discomfort or breakdown to my skin.

I have worn the brace (made of a thermoplastic composite) for several months. It is hard to believe that I struggled for so long without it. When I take the brace off, my head remains straight for a while. The brace has also helped improve the strength and mobility of my upper arms.

Another exciting event in the last year was the award of two grants for an enclosed vertical lift in my home. For the past eight years, I have slept in a family room off the kitchen and taken sponge baths for lack of a downstairs shower. I live with my widowed mother who is my sole support, and we could not afford moving or renovating.

I searched the Internet for grant opportunities and, with the help of my social worker Peggy Vivirito, I applied for and was awarded grants from The Change of Life Foundation and the California Spinal Cord Injury Fund. My synagogue also donated funds.

Obtaining approval of the lift was not easy. I applied for and received a permit from the city of Irvine, California. The biggest obstacle was the approval from the townhome association. After a three-month battle and a signed petition from 250 neighbors, permission was finally granted. I now have my vertical wheelchair lift. The lift has interlocking doors, enclosed in a shaft that is painted with blue and white clouds like the sky, and takes me from the downstairs directly into my upstairs bedroom. I am truly in heaven.

Noninvasive Ventilation Alternatives in Neuromuscular Disease Conference, San Diego, California, November 2002. Some of the speakers, ventilator industry reps, and conference planners.

Photo of Conference attendees

(L to R): Angela King, RRT, Pulmonetic Systems, Inc.;
Rich Clingman,; Judith Fischer, IVUN;
Barbara Rogers, Respiratory Resources, Inc.; John R. Bach, MD; Judy Whitman, RRT, and Mary Marchand,
Advanced Respiratory.

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