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Posts (6)

Mar 2, 2018 · Parsonage turner syndrome * in Brain & Nervous System

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

Feb 23, 2018 · Parsonage turner syndrome * in Brain & Nervous System

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…

Feb 23, 2018 · Parsonage turner syndrome * in Brain & Nervous System

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.

Feb 22, 2018 · Parsonage turner syndrome * in Brain & Nervous System

My husband and I are struggling with the instructions I was given to “take these pain meds and be patient!” My whole life is turned upside down! I was prepared for the very difficult 3 month recovery from the posterior cervical fusion. I was not prepared for the debilitating PTS afterwards. I can’t even travel to be with my daughter who is giving birth to our granddaughter any day now and I have been an absentee grandmother to my 18 month old grandson. Why? Because of pain. Then surgery to correct pain. Then pain after that. And drugs that make me feel like i’m only half there. And yeah the docs are pretty sure it’s the brachial plexus but are they POSITIVE it’s not the cervical spine? Am I waiting for nothing? These questions keep me awake at night.

Feb 19, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Hi All – so glad I found this group. Just finding my footing after 5 level posterior cervical spine fusion. 2 1/2 months into recovery I was diagnosed with Parsonage Turner Syndrome. Doctors think it is not directly related to surgery but this area was still healing so vulnerable to this rare virus. Seems like it’s diagnosed by eliminating what it is NOT. I had an EMG which was abnormal. To me this test was uncomfortable but not painful. Also MRI of brachial plexus also images C5-T1 so you can see the spinal nerve roots. I was told it is self-resolving 4 months-1 year and to be patient and I am working with a pain doctor to manage the pain. Currently Percocet and Gabapentin. So little known about this and incredibly difficult to manage the PTS on top of neck which is barely healed and still so stiff and sore from surgery.

Feb 19, 2018 · What Distracts You From the Pain? in Chronic Pain

Glad I found your post. This is me. Just diagnosed with Parsonage Turner Syndrome after a 5 level posterior cervical spine fusion. Trying to get my bearings.