Parsonage-Turner Syndrome

[DavidR]

Hello to all, I've just been diagnosed with this particular syndrome, about which I'm starting to do research. I've had one doctor suggest surgery on my suprascapular nerve - i.e. cutting the ligament holding it in the scapular notch - and a second recommending leaving it alone. This doctor was the one who named my problem, said I have a classic case, and told me that 80% of people recover their muscle strength within 12-18 months. He gave me exercises to help this process.

I'm curious if anyone out there can give me an opinion from personal experience, and I appreciate all responses and advice.

David

[francine]

I've done a lot of research of this for myself and learned that PTS is a temporary condition. I would MOST CERTAINLY get multiple opinions before I went ahead with ANY surgery especially because it is a temporary issue. Now - of course the documents say that it can go away in 7 weeks or 7 years.... and that is why if I were you I would get multiple opinions from doctors who specialize in bpi AND pts.

Were they able to ascertain how you got it?

How are your pain levels?

Are you able to do the exercises? What kind of range of motion do you have?

francine@injurednewborn.com
contact me by email if you wish,

francine

[francine]

btw here's a great link for info on it

http://www.aafp.org/afp/20001101/2067.html

[bjones]

David, I am currently enduring this syndrome as well, first experienced numbness/tingling in the arm and cold fingers/hand, then pain came on. Am taking Vicodin/Skelaxin/Naproxen and Neurontin at bedtime only for pain relief. Am hoping pain will recede soon, has been abt 3 wks now. Have major fatigue in rt arm and shoulder, EMG shows nerve damage to biceps, deltoids,hand and finger muscles. Ulnar nerve at elbow and pecs are especially painful. Have been told not to lift anything with rt hand as is east to do further damage as muscles are weakened. Have also been told sling is not good as may cause frozen shoulder. Also have ongoing damge, unrelated, that was discovered just before Parsonage-Turner came on, have damaged trapezius muscle due to carrying heavy book bag on that side for years, this has caused shoulder to drop 1 1/2 inches lower than left. Mostly waiting for pain to diminish before starting PT, most articles I have read says surgery is only considered if good recovery does not take place after several months or longer. IMO, surgery will lead to more problems, scar tissue, etc. In fact, surgery can trigger Parsonage-Turner! Mine was triggered by tetanus booster - I will not be getting another one, ever! Wd like to hear how yours started and how it progresses - wd be interesting to compare notes on Drs. and suggested treatments.

BethJ

[admin]

Beth, I sent you a personal reply some time ago. Hope you got it. DR