I’m a professional golfer who was first diagnosed with PTS August 2004, after receiving a tetanus shot a few months prior. I was woken up at 4:00am with excruciating pain in my left arm that was so severe, it brought me to my knees. I took it upon myself to drive to the hospital, barely making it there, slumped down in my seat. The doctors in the ER were baffled by my symptoms. I was given morphine and it had no effect. I was admitted overnight for further evaluation. They sent another doctor who also had no answers for me. They gave me an MRI and I was loaded with pain killers, all of which did not help me. The MRI showed nothing. They even gave me an EKG since the pain was all down my left arm in case I was suffering a heart attack.
The pain radiated to my shoulder and turned into sharp throbbing pain. I was released the following day with no diagnosis and a prescription for pain medication. I was referred to another doctor and still, no answers for me. As you all know, the frustration was building. I felt helpless because no one could help me and I was still in constant pain. The pain was so intense, I was only able to sleep for about an hour a night for three weeks.
Finally, a few days later, I was sent to a Rehabilitation Medicine and Electrodiagnosis MD who gave me an electromyography (EMG) and nerve conduction velocity test (NCV). These tests are used to help evaluate and treat problems related to your muscles or nerves. An EMG measures the electrical activity of the muscles and can pick up any abnormal electrical signals to locate the specific site of nerve damage, if any. The NCV test evaluates nerves by measuring how fast the electrical impulse travels through them. Certain nerve diseases cause the electrical signals to travel more slowly. There is some discomfort with these tests, but I highly recommend them if you suspect PTS. This is how I was diagnosed with Parsonage-Turner Syndrome.
Even after the proper diagnosis, the doctor tried several medications for pain with no success. Finally, I was prescribed Neurontin (gabapentin) and finally the pain subsided a lot. I was able to keep the pain under control. Neurontin is a medication for nerve pain. This is what worked best for me. The other prescriptions I tried did not work because they were for muscle pain. I had to take it for a month before the pain was gone. Generally PTS takes about 3 weeks to one month for the pain to stop and during the time you are experiencing pain, you are also experiencing muscular atrophy in the affected muscle. For me, it was my infra/supra-spinatus muscles that wasted away, leaving an indentation in the back of my shoulder and winging of the scapula.
Although the pain subsided, I was restricted in arm movement. I could not lift my arm to reach or grab anything, even to brush my teeth! I couldn’t reach my steering wheel. I was able to still move my fingers, I just couldn’t lift my arm even table length when I was sitting down. By then, I felt like my arm was useless. This lasted for about a month and a half before I was referred to a physical therapist. I was given a range-of-motion evaluation with a result of minus zero (meaning less than the 0-5 bracket). I was basically a monoplegic. That’s when it really hit me. I feared I would never be able to return to golf or even return to normal every day life. I went through vigorous exercises three times a week for about another month and a half. My routine consisted of using the arm bike, an exercise using a bungee cord for internal/external rotation, in combination with lateral pull-downs and a lot of others. I highly recommend physical therapy but the process takes lots time and patience. You’ll go through a lot of frustration and maybe a little soreness, but I feel it speeds up the recovery time. You must stick with it even when you want to give up. It took me about 4 months before I had regained full range of motion and use of my arm. It took about 2 and half years from diagnosis for muscle regrowth. I realized this was going to be the biggest fight of my life, but because of my faith in myself and God giving me the reassurance, I knew I was going to get through not just the physical, but the mental anguish as well. The ironic thing was, something told me that I was going to make a full recovery, and I did.
Shortly after I finished my physical therapy, I finally returned to the golf course to pursue my dream to one day make it on the PGA tour. Upon my return, I immediately won a tournament and brought home a trophy for longest drive, a trophy for closest to the pin, and a trophy for 1st place overall. I still proudly display these in my home today because they represent triumph over PTS and being able to come back stronger.
For four years, I followed a heavy workout routine for five days a week. In September 2008, I started having pain in the right side of my trapezius. I went to the doctor the following day and was diagnosed with a sprained trapezius. In the middle of the night, I began having shooting pains down my neck and trapezius area. The pain worsened and kept me from sleeping over the next few days. I was ordered an MRI to see if I had a pinched nerve in the neck area. Results were negative. At that point, I started wondering if this could be PTS again and went back to the doctor who had diagnosed me the first time. After performing the same previous tests, it was confirmed that I had contracted PTS for a second time, this time in my right shoulder. I was devastated. I thought “How could this be happening to me again?”. I suffered the same pain and muscular atrophy but restricted movement was not as severe as it had been in my left arm. I followed the same road to recovery as I did the first bout. I was more secure this time around because I was confident I could beat it.
Now, a year later, here I am back on the golf course. Ironically, I am playing better than I ever have in my life. I almost have all my strength back and my muscle is still filling in. I do still have to maintain both my shoulders with some exercises in order to keep me strong. I hope I have been able to give you a better understanding about PTS and inspire you at the same time. Once I fulfill my dream, I will put this on the map through my golf. Although it’s unfortunate, it’s nice to know that we can all relate to each other, offer support and not feel so alienated. My thoughts and prayers are with all of you and I hope that we are able to educate others more about this syndrome so that doctors can diagnose future patients faster and correctly, and eventually maybe even find a cure.