Steve Christner

Friday, November 23, 2007

Thanksgiving 2007

Yesterday we had a good time at Trish's mom's house. The food was great and we ate very well. Everyone had to say what they are thankful for which was nice.

On our way over there we were at the Tacony/Palmyra bridge at a complete stop trying to merge into traffic. We were waiting for about thirty seconds when WHAM! we get hit from behind. Instantly I felt pain in the back of my head. Everyone else was OK and there was minimal damage to the car. They called an abulance for me but I refused to go because I knew they would not be able to do anyhthing to help me because of the complex problems in my neck. As the day went on the pain spread to my ears, jaw, shoulders, and arms. My head felt like it was burning. I did feel a little better when I woke up this morning so I am going to have to take it easy and hopefully the worst is over. Enjoy the slideshow!!!

Thursday, November 22, 2007

LIVING WITH GOLDENHAR SYNDROME support group goes online!!!

WELCOME!!!

Today is the first day of the LIVING WITH GOLDENHAR SYNDROME support group going online. It may take some time to take off as I will need to find as many families and individuals affected by Goldenhar Syndrome. I appreciate anyone subscribing to this group. You can subscribe by scrolling down this page to you see a subscribe button. Enter your email address and hit the button subscribe. You also may receive an invitation from me where you can just follow the instructions.

You can post any questions, information, or responses to by sending an email to goldenhar-syndrome@googlegroups.com

HAPPY THANKSGIVING!!!

I want to wish everyone who views this blog a happy and safe Thanksgiving. We will be going to Trish's mom's this year for Thanksgiving. Don't eat too much!!! I will post pictures from our Thanksgiving on friday.

MY NEPHEW LUKE DONOHUE BORN ON 8/30/2007

Thursday, November 15, 2007

Tuesday's Doctor's Appointment

I saw the orthopedic surgeon Dr. Nader M. Hebela, MD. He basically told me exactly what I thought he would say. Basically I am screwed and have to live with the neck pain and problems forever. They cannot do surgery unless it is life threatening. The reason is because of the complex nature of my cervical spine. It would be to much of a risk to go in there again plus because of the problems being complex they could not fix anything and would only be able fuse my spine further. Since my 1st surgery of spinal fusion has only resulted in nothing but further problems and uncontrollable pain I would never approve the surgery. The only positive from the neck fusion is it stabilized my upper cervical spine.

OH Well, I guess a better get used to living with this condition and pain for a long time. I will continue the pain management program of Nerve Block injections every two weeks and being on the Fentanyl patch. I will also do my best by using conservative methods like
1. wearing a soft neck collar whenever I drive, watch TV, or work at the computer
2. Quit smoking
3. Over the counter pain medication for breakthrough pain
4. Walking and do some exercises not using my neck

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