Question
Hi Patricia,
My son age 19 was just diagnosed with Parsonage Turner syndrome. He started out with upper back pain and had an MRI done and it showed a herniated disk of C4. About two months later instead of getting better with PT he got worse and had epidural injections into the spine with a steroid. He got worse. He then developed pain in his shoulder and worse pain in his neck. He has been to several doctors and hospitals and he gets pain meds.specifically loritab. He now is seeing a doctor at a spince clinic. He could now not move his arm past his waist. He had a nerve conduction test that was positive for Parsonage turner and today is seeing a neurologist. My son is taking pain medicine like Pez. He is very honest with me on how much he takes and has just told the doctor who told him he could not give him any more. One of our other sons was in rehab for Oxycontin addiction so I am pretty scared however I know my son is in pain. I don't know what to do to help him? HELP.
         Linda

Answer
Linda,
Please don't think I have ignored your question. I don't work on Saturdays (Jewish sabbath), and was away on Friday. However, I needed to do more research on Parsonage Turner syndrome. Truthfully, I had never even heard of it. My sister is an Occupational Therapist, and I want to talk to her about it. Also, I have some ideas on pain management. If you can be patient for one more day I will get back to you with, hopefully, better information than I started with. OK? Again, I apologize for the delay. I like to do research whenever I get a question I need help with. Thank you for your patience. You should be hearing from me within a day.
Patricia

FOLLOW UP:
Linda, my sister had not heard of Parsonage Turner. I was a little surprised. Anyway, my research simply revealed that it can be a very painful condition, debilitating also. You already know that. First, no doctor should cut a patient off their pain meds. I've seen it done, however. It is still wrong. If a patient has been on a pain med for a while they can be dependent physically and will suffer withdrawals. I don't want to see that happen to your son. The epidurals and injections did not help. They do not usually help this type of pain, which is a result of a deformity in the joint area. Sometimes it can be the result of an injury or even happen at birth. My best suggestion is to consult with a physician who has experience in Parsonage Turner. They may be hard to find, but use the internet to search. There may be some type of treatment or modality that can help him. Also, a pain clinic is probably the best bet at this point. They give pain meds, but also ask their patients to sign a contract that they agree not to abuse their drugs, to sell their drugs, or to mis-use them. They also sometimes do urine drug screens to make sure the patient is getting the meds; they also do drug counts. Sounds like a lot of hoops to go through, but if a person is truly in pain it should be no problem for them to pass all the "tests". Apparently the Lortab is no longer holding him, and the pain clinics can give him something that will be effective and they won't let him run out as long as he abides by their rules. I know you're concerned about addiction and physical dependence. These are very strong drugs, but recent research shows that patients, (for whatever reason) do not become addicted if the drugs are taken for true pain. Physical dependence will happen, but true "addiction" does not. With addiction you become physically AND psychologically dependent, so that's the difference. It may be that the pain clinic will not be as aggressive in diagnosing or treating the disorder, just treating the pain. So, it will probably be up to you to seek out a specialist who may be able to find a modality that will be able to offer him some relief. I hope I've helped answer your question. It took me a few days to learn about it. Please feel free to email back if you need further help. I'm here for this purpose.