Hello @kimchi19, welcome to Connect. There is another discussion with the same name where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Brain & Nervous System > Parsonage turner syndrome *
-- https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I'm sure it must be difficult to be told to wait 2 years to see if a symptom will go away. Have you thought about getting a second opinion?

Hello @kimchi19 I'm 15 months into my PTS story and I can tell you it DOES get better with time but you have to be patient! Here's somethings to know: 1. If you have hand mobility issues get to a hand PT ASAP. My dominant hand was affected, the index finger became completely rigid. Doing anything became almost impossible. I finally ended up going to see a hand specialist who gave steroid shots and then I started hand therapy. Getting back the use of my hand was a tremendous improvement. 2. gabapentin is a mixed blessing. I would NOT have made it through the most painful times without it, but getting off of it has been challenging. At the most I was taking 1800mg per day ( 6 300mg pills), I tried to reduce by 1 pill/day and could not. The nerve pain would return with a vengence... finally the hand doctor suggested I get 100mg pills so I could wean off more slowly. Since then I've been reducing by 100mg every 2 weeks. I'm down to 900mg daily now. It's still a struggle! The pain is very real and it takes alot of commitment, but I AM going to get off of this medication THIS year! 3. Avoid any surgery if you can. I got impatient with my recovery and kinda pushed my hand doctor into doing a tendon release surgery. It all went well, but I think some of the pain I'm having now is related to that surgery. Probably if I had just been patient I would be in a better place. It's never the best course to have a surgeon digging around inside your body unless it's 110% necessary! 4. It's really hard to let go and let others do things for me! Takes this time to allow others to be your support.

Hope some of that is helpful! Keep us posted on your progress...
JJ

Hi, @kimchi19 I’m sorry for just responding now. I must have missed your post. I have had PTS since February 2017. After a couple of months of trying to diagnose what I had my doctor referred me to an orthopedic nerve surgeon. I had an MRI done of my neck and an EMG. The surgeon assured me that I needed ACDF surgery (cervical fusion) so I agreed to the surgery. Unfortunately, the surgery didn’t help my condition - nerve pain in my right arm and hand. Even worse, two weeks after my surgery I developed the same nerve pain in my left hand. Fortunately, the pain is not nearly as bad as in my right hand, but it is something I live without. 🙂

A week after my surgery I saw the doctor for a follow up appointment and I told him my pain was getting worse. He put me back in the hospital where I had more MRIs and tests. The doctors, a neurologist included, couldn’t find what was causing my pain.

About 6 weeks later I saw two neurologists and the second one performed an EMG and concluded that I likely had PTS. A more recent visit to another neurologist confirmed that I had PTS. I was told that mine is unusual in that the pain doesn’t usually last this long.

Anyone who has PTS will tell you that this condition requires a lot of PATIENCE. I have tried many remedies, but I only get some relief from pain meds, compression gloves, ice, and heat. In the past 6 months I have had some improvement with the use of my right hand and arm, but I am still very limited with what I can do. More than anything, though, is the constant nerve pain that I experience on a daily basis. That has been difficult to live with.

I hope you get better very soon. Just know that you are not alone. There are lots of kind people who are here to help you!