My now 17 year old daughter was a competitive swimmer and had surgery in March of 2001 when she was 12 years old to repair her labrum in her right shoulder. Five weeks later, she started experiencing severe pain in her scapula. After repeated visits to the surgeon, he told her that there was nothing wrong with her and told her to "deal with it." We found another orthopedist who, within 10 minutes, diagnosed her with Scapular Bursitis. She was successfully treated with a cortisone injection but had a few more bouts of Scapular Bursitis up until January of 2004. Again, she was given cortisone injections in the bursa and the pain was relieved.
However, in January of 2004 she had severe shoulder pain (diagnosed as Multi-Directional Instability) and scapular pain and at that point, the scapular winged terribly and the pain continued. It did not heal until August of 2004, it took eight months to heal.
Between January 2004 and August 2004 we went from doctor to doctor, and got varying opinions from each. Opinions ranged from "A Capsular Shift for the shoulder instability will correct the winging" to "There is nothing wrong with her. There is no reason that she can't sit in school. If she can get in a car and sit in my office, she can sit in school", to "I'm not operating on her shoulder because her scapula is winging".
In another instance, we sat in an orthopedist's office and he told her that, based upon his experience with FSHD(Facioscapulohumeral Dystrophy) patients, that he was sure that she had FSHD and referred us to a neurologist for testing. He agreed that if tests concluded that there was no sign of FSHD that he would operate to correct the shoulder instability. Testing revealed Long Thoracic Nerve Palsy and we returned to that same orthopedist to arrange for the Capsular Shift on her shoulder.
He refused to operate on the instability, insisting that even though the tests were negative, she would eventually develop FSHD. He said this in front of my daughter who was 16 years old at the time and told her that he didn't know if it would 5,10, or 30 years, and didn't know if she would be in a wheelchair in 3 or 13 years, but that she would develop FSHD.
Finally, in September 2004 we found a competent orthopedist who felt that since the Long Thoracic Nerve healed itself, that he would operate on the shoulder instability.
In December of 2004 she had successful surgery to correct Multi-Directional Instability in her right shoulder. Things were fine for eight months; she returned to her normal, happy self and was feeling great.
Last month, the scapula began to wing again and she has severe, debillitating pain from her neck down her leg. A recent EMG and Nerve Conduction Studies revealed considerable damage to the Long Thoracic Nerve. The specialist who performed the studies tried his best to dismiss me, insisting that she will get better with time. It wasn't until I reminded him that this is her second bout with LTNP and when he realized that I knew more about the condition than him that he stopped to listen to me. He knew nothing about LTN Decompression surgery, and went as far to tell me that I was wrong, that was I referring to was a Nerve and Tendon transfer. I told him that it was apparent that I was getting nowhere with him and left his office.
I have a few questions regarding her condition. The first one is, has anyone had successful Long Thoracic Nerve Decompression surgery by a surgeon in Florida and, if so, who is it? I should also ask the question, has anyone had successful LTN Decompression surgery and, if so, with whom and where?
Also, a friend of mine gave me the name of Paul St. John, a Neuromuscular Therapist in St. Petersburg, Florida who successful treated him for severe headaches and shoulder pain. In doing research on Paul St. John, it appears that he has been a miracle worker for many, treating a wide variety of neurological and muscular conditions. He, himself was in chronic pain after experiencing three major accidents and began reseaching pain and the association between muscles and nerves. He developed the "St. John" method of Neuromuscular Therapy, taught someone to treat his condition and is now pain free. Information regarding Paul St. John can be found on
www.stjohn-clarkptc.com and
www.healthquestenterprisesinc.com/stjohnseminars. Has anyone tried Neuromuscular Therapy or this "St. John" method? I've scheduled an appointment with him as I'm exploring every avenue that I can until I can get her better.
Please let me know if anyone has had success with the Decompression surgery. As a parent it is so awful to see your own child in so much pain and professionals dismissing her the way that they have. It is such a helpless feeling and extremely upsetting that she is suffering so much and there is no relief available.
Thanks for any advice or help that you can give me. I really appreciate it.