Accident Update

It has been a week since my last post. In this past week I have been to the Penn Pain Center for cortisone trigger point injections. TPI is a procedure used to treat painful areas of muscle that contain trigger points, or knots of muscle that form when muscles do not relax. For me the relief lasts for a couple of days and this week after the accident it didn't help at all. I went to the doctors today and they diagnosed me with whiplash and in my case it really aggrevated the problems I already suffered from making the pain worse. I have to go to Physical Therapy more for massage, heat and ice than trying to do exercises to strenthen the muscle. Due to the fusion and complex anomalies on my neck doing exercises are limited to my fusion and most likely will cause more pain then helping. I have to continue on the fentanyl patch to manage the pain and due to the increase in pain from the accident I may have to have my dosage increased.

On a better note, this weekend we are going to my Mom's for our annual XMAS party. We have a chinese polyianna every year which is alot of fun. I will post a slideshow on Monday.

Enjoy this weekend and the beginning of December, the last month of 2007. I can't believe 2008 is right around the corner. Where has the year gone?

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!!!

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

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

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.

ADDED PICTURES!!!

Today I added pictures of myself related to my Goldenhar Syndrome condition. They are displayed at the end of my blog. Please check them out.

MRI & XRAY TEST RESULTS

I received my test results of my cervical MRI and XRAYS that were performed on 10/29/2007. I am not a doctor but based on my research and results of previous pre-surgery tests the results were not good. It seems my neck is continuing to degenerate even with the cervical spine fusion from C0-C5. The main results that stand out to me is that I have severe Osteopenia. Osteopenia is basically the step that comes before Osteoporosis. My bone density is extremly low. I also have Spondylolisthesis which is a condition in which one bone in your back (vertebra) slides forward over the bone below it. It is worse when my neck moves. Spondylolisthesis may be caused by any of a number of problems with the small joints in your back. You could have:
A defective joint that you've had since birth (congenital).
A joint damaged by an accident or other trauma.
A vertebra with a stress fracture caused from overuse of the joint.
A joint damaged by an infection or arthritis.

There are about 5-10 other problems that I am not going into detail about because
I won't know the extent and details of the results until I see my orthopedic surgeon on 11/13/2007.

My Nephew Luke's Christening

Today was my nephew Luke's Christening . We attended the mass and then went back to my sister Jenn's for the party. It was very nice.



As far as Football Sunday goes it was not a good day. I wanted Indy to beat New England and they should of won. Up by 10 with 9 minutes left they played prevent defense which prevented them from winning. I hate New England and especially Bill Bellichek. After that the Eagles got crushed by Dallas.