Parsonage turner syndrome *

Hi @kimchi19 you may have noticed I moved this post to this existing discussion on parsonage turner syndrome so that you can learn from others who have experience with this diagnosis. Simply click VIEW & REPLY in your email notification to get to your post.

I wanted to introduce you @elained @richman54660 and @jjspokane61 as they may be able to offer you support.

Back to you @kimchi19, when will you be going to see the neurologist in Houston?

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

@josebaltierraiii I'm probably too late to be helpful with your question about whether I would "self medicate" with Gabapentin if I had a relapse... and the answer is... YES I would. I'm not completely off of it yet, but I intend to keep some of the extras around in case on an emergency. It takes days/weeks to get into the primary dr and in the mean time I would self medicate. BUT... one article I read about PTS said that EARLY administration of steroids could lessen the nerve damage done - so THAT would be my first thing to do... call my DR in tears asking for prednisone or just sitting in his office until he has time to see me... hope that helps! You should post an update so we know how you're doing.

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!

Hello @patrick17, You mentioned earlier that you had tried many things but only get some relief from pain meds, compression gloves, ice, and heat. Have you thought about trying any other kind of alternative therapy?

There is another discussion which covers pain from many different causes that may be worth checking out. I have degenerative disc disease and osteopenia which gives me lower back pain and makes it difficult to walk very far. I'm looking into it for that but have not found an accredited therapist that is close to where I live.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Hi @adriennes -- It's been awhile since you last posted and I was wondering how you are doing. Have you found anything that helps with the pain and extreme weakness?

Have you thought about trying any other kind of alternative therapy? There is another discussion which covers pain from many different causes that may be worth checking out. I have degenerative disc disease and osteopenia which gives me lower back pain and makes it difficult to walk very far. I'm looking into it for that but have not found an accredited therapist that is close to where I live.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
— https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Hi @andylevine -- I thought I would check to see how you are doing. It's been awhile since you mentioned you had your thymus removed and it resolved all of your issues with PTS. Are you still doing OK and free of symptoms of PTS?

So far so good. Scans are clear and thankfully no recurrence. Still wonder if there was a connection between PTS and thymoma.

Hello, @johnbishop, thanks for your concern and information. I did try myofascial release therapy, but after 5 sessions the therapist didn’t think it would provide any relief or benefit for me. She suggested I try physical therapy. I appreciated her honesty because the therapy was quite expensive. In the past I have tried occupational therapy, acupuncture, and a chiropractic therapy called Active Release Techniques. Nothing really helped very much. For now, I think I will continue to do exercises at home.

Fortunately, I have seen some improvement in my hand and arm in recent months. I can do more things than before. It’s just the pain that won’t quit.

I hope you will find some relief for your back pain. That must be very difficult for you. Thanks for all the help, support, and encouraging words you provide to so many of us here. It’s good that you are so generous with your time.

Thanks for sharing an update @patrick17. I'm sorry nothing has really helped with the pain but I'm glad you are able to continue exercising at home and you've seen some improvements in your hand and arm. I think exercise is really important to keep us mobile. I've just recently started back to using an inversion board to see if it can decompress the spine a little and help with the lower back pain. Of course I have it where it only goes back about 30 degrees past horizontal and then I go back and forth between a little above horizontal to a little below horizontal for about 10 minutes. Too early to tell yet since I've only done it a few days in the mornings.