Parsonage turner syndrome *

Thank you for sharing your experience @adriennes I am so sorry for your suffering. When I manage to pull myself off the pity pot, I have been looking at yoga (which I have done a little but many of the positions rely on shoulder & arm strength which I do not have), and meditation. Interesting idea about training your brain to override nerve damage - I will definitely follow up on that. The mind-body connection with regard to healing is amazing. Started reading Dr. Gary Kaplan’s book Total Recovery: Breaking the Cycle of Chronic Pain and Depression, which looks promising. Do you practice mat or reformer Pilates?
I agree - pain is very similar to, but much worse than radiculopathy! I went thru a terrible period of “oh no I feel so much worse than before surgery!” This was my 3rd cervical spine surgery and he had to go in thru the back which makes for a long and difficult recovery. Although when I got the diagnosis of PTS I was happy I wouldn’t need surgery, I was hoping for a quicker fix.

Big day for me! First solo drive since my Oct. 30th fusion and it is to the hair salon!! Of course. The only places I’ve really been is to the doctor’s-doctor’s-doctor’s or for an MRI or X-ray. A couple of short trips to the grocery store and once to the diner with a friend. Someone else has always driven. Last week (on the way to the doctor’s) I drove with my husband riding shotgun. I needed to test my ROM on my neck with all the hardware - 2 plates, 2 rods and 18 screws! Yikes - how is there even room for all of that? We take for granted the quick head movements and twisting and turning of the neck and upper back it takes to drive. And now there is the added pain and weakness in my left arm and hand from the PTS. On top of all that I have to time my pain meds just right so I can actually be clear-headed enough to get to the salon!! Managing pain takes a lot of effort!! Wish me luck on what for most people is an ordinary task...

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

The only thing I can advise is to rule out Thymoma. My PTS seemed to have been related to this very rare cancer. Once that was resolved so was my PTS.

Sounds about right, some days are much worse than others, my thumb drives me crazy as well as my arm. Ive been doing mat pilates and cadillac exercises, i use an oov too, cross training weak side to strong side, retraining my brain to desensitize these crazy nerves. I don't know if it works but when I'm with my instructor I forget about the pain and concentrate on strengthening the deficits. I got my neurologist to write me prescriptions for pilates and massage therapy,

Insurance may not pay but you can write it off at tax time for uninsured medical expenses, I moved to personal trainers because I used up all my PT, I found someone who works with ME patients, she's amazing

MS patients

Multiple sclerosis sorry spell check, I feel for you, no one can know how this feels I appreciate hearing from you so much!

Hi @kimee I am so sorry for your pain. What tests have you had done? My doctors seemed keen on differentiating pain coming from the spinal nerve (like with a bulge) vs. some sort of peripheral neuropathy. They didn’t see anything on the MRI at all but something in the EMG nerve test caused me to be tossed into the PTS basket. I am not entirely convinced. It could be brachial neuritis, idiopathic (no better), or in my case a loose screw in the fusion hardware (not the first time)! So hard to get answers!! I am told “be patient and take your pain meds.” Well today I had to go up on my pain meds because lower dose stopped working. I am not cool with that

I would get second and third opinions. Doctors/hospitals should give you copies of any radiology on CD with reports. Always get reports from every doctor visit. I even spreadsheet my lab reports to see when infection/inflamation markers go up and down. Nobody figured out why when I was given antibiotics for bronchitis, etc. that it helped more than that. Turned out I had a big gall bladder infection. Doc reports will say they checked throat, eyes, stomach palpation's but during that visit YOU KNOW, they didn't do that as you have them mail you copies of labs and everything. After 4 years of losing 70#'s and looking like hell, I am finally coming back and that is AFTER they removed gall bladder and treated me for candida. I feel my neuropathy and calcinosis is a by product of the prescriptions they gave me. Good luck but document everything in a diary and talk to doctors about their office visit notes if you don't understand something.