United Brachial Plexus Network, Inc.

Thanks to everyone for your patience. The date has finally been confirmed. It is definately going to be Saturday April 1st. It is still going to be at the Marriott in Mason, OH. I am working on getting appointment times together and I'll let everyone know what time their appointment is in the next week or so. The appointments will begin around 8:30am and they are scheduled for 15-20 minutes each. If anyone would prefer an appointment later in the afternoon on Saturday please let me know ASAP!

I will post the phone number for the Marriott later in the week for those of you who will be spending the night to make reservations (they need to put us into the system for a block of rooms).

Thank you again and please contact me if you have any questions at dmalfieri2@aol.com or 513-753-3647.

Thanks,
Deanna Alfieri
(Sydney's mom)

Hi all. I am a 42 year old male suffering with chronic pain associated with a winging scapula. Up until age 39 I was very athletic lifting weights and running 25 miles a week. My life has been turned upside down by a combination of spine and brachial plexus disease that became symptomatic in July of 2002. I happen to be a medical doctor who specialized in Internal Medicine and I am now a patient. As such, I have quite a bit of insight into the nature of the disorders and symptoms suffered by people with conditions similar to mine. When I developed spontaneous onset severe shoulder pain followed by wasting of the supraspinatous and infraspinatous muscles (the muscles housed in the upper and lower portions of the scapula) I recognized that I had a neurological disorder. I saw a neurologist and had all the usual tests. Turned out I had significant cervical disc disease with spinal cord and nerve root compression while at the same time my presenting symptoms, Shoulder MRI, Nerve Conduction Study and Exam suggested an isolated problem of the suprascapular nerve- a nerve that exits early from the upper part of the brachial plexus. Parosnage Turner Syndrome- a disease of unknown cause affecting the nerves of the brachial plexus, was diagnosed. Since no known relationship exists between cervical disc disease and Parsonage Turner Syndrome and it was not suspected that I could have two unrelated serious problems at the same time, an achems razor approach was taken and it was decided to leave my neck alone and treat the shoulder pain symptomatically. Unfortunately, I developed spinal cord symptoms with below-the-waste problems and severe pain between and along the edges of the shoulder blades. I was rediagnosed with parsonage turner AND cervical myelopathy. I had cervical spinal fusion and my lower body problems vanished but the pain between the scapulae did not. About 2 weeks after that surgery, I had a second attack of parsonage turner. Second attacks, unfortunately, are not rare. This time, another nerve of the brachial plexus was involved- the long thoracic nerve also known as the long nerve of Bell. Wasting of the serratus anterior muscle developed rapidly along with winging of the scapula. About a year after the surgery, the wasting of the supraspinatous and infraspinatous was no longer evident. External rotation of my right arm, not possible for 1.5 years was now back to normal. A whole new pain syndrome developed with the latest parsonage turner attack characterized by terrible unrelenting muscle spasm and pains of all character in my upper back and sides. Any attempt to use my upper extremities would worsen the pain and for almost 2 years, I could hardly move. I saw physical therapists, massage therapists, used TENS and Electical Interferential Units. I tried exercise, stretching, inactivity, meditation. I took every medication in the book for pain and meds specific for nerve pain and much much more. Nothing worked. Depression and anxiety were horrible. Pain kept me up at nights. I had to retire from my job a year and a half ago, sell my home and leave our city for a more affordable location. Almost 3 years after neck surgery and the second attack of parsonage turner, I still have disabling pain and I have to be very careful with my arms. Raising them for only a few moments causes pain and any significant upper extremity activity lands me in bed for a few days. While most traditional treatments have failed, I do get some relief with acupuncture these days. There are at least two types of accupuncture. I tried both Japanese and Chinese. Japanese acupuncture is not as helpful for muscle spasm. The needles are very superficial. Chinese acupuncture goes deeper and seems to be more helpful for muscle spasm. In any case, after the second treatment session, I got an enormous release in the middle of my back and the pain related to the spasm of those muscles has not come back. For anyone suffering as I have, it is essential to treat psychological factors that can make coping with serious chronic pain impossible. Depression must be treated vigorously.
I am still quite disabled these days. I get by day to day by focusing on my loving family and by trying to enjoy the better moments. I do not try to think of the future and live day to day.
After exhaustive research, I do not consider ANY surgery, including neurolysis for early cases or scapulothoracic fusion and pectoralis minor transfer to be effective for PAIN. Neurolysis surgery (freeing the long thoracic nerve from the scalene muscle) probably is worthless. There are no controlled studies on neurolysis and the existising data is very very weak to support the procedure- and it is not without risks! Many cases of winging scapula resolve on their own without any intervention except rest. Surgery is helpful to restore shoulder FUNCTION in those people who are not willing to live with limited forward shoulder abduction and who have had a winging scapula for more than 2-3 years.
I hope this helps someone
Jordan Train, M.D.

Thanks Deanna- late morning or early afternoon would work best for Hannah, but we'll take whatever is available. Let me know if there is anything you need help with.
Emily