Steve Christner: TOMORROW's DOCTOR APPOINTMENT

Monday, November 12, 2007

TOMORROW's DOCTOR APPOINTMENT

Tomorrow I see an Orthopedic Surgeon to review my MRI and X-RAY tests. I am very frustrated with University of Pennsylvania's Orthopedic Dept. My original surgeon who did my cervical fusion 3/6/2006 is MIA. That is scary. They (HUP) will not tell me anything of where he is or how to get a hold of him. I called my insurance company and did an extensive search on the Internet and the results show he is not listed at any other hospital or practice. So I had to go to the surgeon who replaced Dr. Chin and his name Dr. Christian Fras. He has only been there for about 6 months and now he has left the hospital. I now have to see another new surgeon to review my results. I am not very confident that I will get any substantial information regarding the test results and the my severe pain.

Dr. Chin was one of the best Orthopedic surgeons in the country and specialized in severe neck anomalies. I also seen in the past another leading surgeon in the country (Dr. Todd Albert)located at Jefferson Hospital. Due to the problems at HUP I made an appointment to see Dr. Albert in January to see what he says about my test results.

I am also considering going to the Cleveland Clinic or the Mayo Clinic based on how I feel when I see the surgeon tomorrow. Many times when I have seen surgeons for the first time and they do not want anything to do with me because of the severe complications in my neck.

I'll let every one know tomorrow night what happened.

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WHAT IS GOLDENHAR SYNDROME?

A term that is often used synonymously with "Oculo-Auriculo-Vertebral (OAV) Spectrum," is a rare disorder that is apparent at birth (congenital). The disorder is characterized by a wide spectrum of symptoms and physical features that may vary greatly in range and severity from case to case. However, such abnormalities tend to involve the cheekbones, jaw, mouth, ears, eyes, and/or bones of the spinal column (vertebrae).
Synonyms of Goldenhar Syndrome (Oculo Auriculo Vertebral Spectrum)
FAV - Facio-Auriculo-Vertebral Spectrum
First and Second Branchial Arch Syndrome
Goldenhar-Gorlin Syndrome
OAV Spectrum
Oculo-Auriculo-Vertebral Dysplasia
Disorder Subdivisions:
Hemifacial Microsomia (HFM)

A variety of terms has been used to describe this extremely variable disorder. According to the medical literature, when malformations primarily involve the jaw, mouth, and ears and, in most cases, affect one side of the body (unilateral), the disorder is often referred to as "Hemifacial Microsomia." If abnormalities of the vertebrae and the eyes are also present, the disorder is often called "Goldenhar Syndrome."

In most cases, Goldenhar Syndrome (OAV Spectrum) appears to occur randomly, with no apparent cause (sporadic). However, in some cases, positive family histories have been present that have suggested autosomal dominant or recessive inheritance. In addition, some researchers suggest that the disorder may be caused by the interaction of many genes, possibly in combination with environmental factors (multifactorial inheritance).

MY MEDICAL CONDITIONS

1. Severe Chronic Pain: Suffering from severe chronic pain to neck, ears, jaw, eyes, and head due to vertebral malformations ( refer to Vertebral Malformations down below).
2. Sarcoidosis: involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas (gran"u-lo'mahs) because they look like grains of sugar or sand. They are very small and can be seen only with a microscope
3. Craniofacial abnormalities: bones of the upper and lower jaws (maxillary and mandibular underdeveloped. Absence (anotia) and/or malformation (microtia) of the outer ears (auricles or pinnae). Eye abnormalities (cysts on the eyeballs, epibulbar dermoids and lipodermoids.
4. Difficult Intubation – Class IV Airway
5. Klippel-Feil Syndrome: It is a rare disorder characterized by the congenital fusion of any 2 of the 7 cervical (neck) vertebrae.
6. Prominent Cervical Kyphosis, Cervical Scoliosis , · Cervical Lordosis: There is two much curve in the spinal column in the neck or cervical area.
· Kyphoscoliosis: Backward and lateral curvature of the cervical spine
· Rotoscoliosis: Abnormal rotation as well as a lateral curvature of the spine. In my case convex curve to the left in the upper cervical spine and convex to the right in the lower cervical spine.

MY 13 SURGERIES

MY SURGERIES (13)
3/6/2006 – Posterior occipital cervical to C5 fusion - Presbyterian HUP, Dr. Kingsley Chin
1/29/2006 – Lung Biopsy (Bronchoscopy) - HUP, Dr. Larry Keiser
6/8/1993 – Excise excessive skin and subcutaneous tissue Left ear & Graft, rib cartilage to left ear - CHOP, Dr. Linton Whitaker
9/28/1992 – Incision & Drainage, Abscess (complicated-Left mandible near bone graft) - CHOP, Dr. Linton Whitaker
8/17/1992 – Reconstruct mandibular ramus with bone graft; Lefort I osteotomy; reconstruct midface; intrusion, single piece; Genioplasty; sliding osteotomy single piece; Reposition left ear; excise skin graft & Otoplasy (set right ear back) - CHOP, Dr. Linton Whitaker
x/x/1991 – Removal of left eye dermoid cyst - Frankford Hospital (Torresdale), xEye Surgeon
8/31/1983 – Removal of wisdom teeth - Presbyterian, HUP Medical Center, Dr. James A Tatoin, Jr.
6/x/1973 – Conchal Stage Otoplasty (left ear) - CHOP, Dr. Linton Whitaker
3/x/1973 – 3rd Stage Otoplasty (left ear) - CHOP, Dr. Linton Whitaker
2/x/1972 – Partial elevation of (left ear) - CHOP, Dr. Linton Whitaker
8/23/1971 - 2nd Stage Otoplasty with Costal Cartilage Implant (left ear) - CHOP, Dr. Linton Whitaker
4/16/1970 - Excision Scar and rotate ear parts (left ear) - CHOP, Dr. Gerald Aker
10/14/1969 - 1st Stage Otoplasty - CHOP, Dr. Gerald Aker