Parsonage turner syndrome *

Hi I’m just wondering if anybody can tell me anything about parsonage Turner syndrome my partner (male 33 years old) was diagnosed with this 3 years ago after many months of different diagnosis he lost all feeling in his left shoulder arm hand and fingers in 2017 after months of intense pain finally in 2020 this started getting a little better although his left hand was still very much unuseable and still has numbness in parts of his arm just a few days ago it has flared back up immensely he’s in excruciating pain and his left shoulder seems to have dropped has anybody else experienced this I just started feeling positive about his recovery as this horrible thing has taken so much away from him ie job mental health and self worth but seems we have a long road ahead thank you all for any help

Good morning @stacy88 Welcome to Connect. We are a group of people who try to help each other through our difficult health journeys. We are not doctors so we are unable to diagnose and prescribe, but we can share information and what works and doesn’t work. I’m going to ask a moderator to move your posting to an on-going discussion about Parsonage-Turner syndrome.

How has your partner been treated so far?

Thank you for replying @becsbuddy any info would be a big help as we don’t know very much about it at all my partner in under a neurologist but so far the only treatment he has had is medication ie Pregabalin which helped at first when the pain first started but dont really help with the numbness/tingling

Hi Stacy, I add my welcome. As @becsbuddy has suggested, I moved your post to this active discussion about Parsonage-Turner syndrome (PTS) so you can connect with other members like @patrick17 @andylevine @kgoodwin9 @jjspokane61 @macker4635 @smf and more.

You may also find these related discussions useful:
- PTS & Trigeminal Neuralgia - What do my symptoms add up to? by @macker4635 https://connect.mayoclinic.org/discussion/new-to-autoimmune-what-do-my-symptoms-add-up-to/
- Shoulder/arm pain related to Parsonage Turner Syndrome by @nychole3080 https://connect.mayoclinic.org/discussion/shoulderarm-pain-help/

According to this article,
"There is no specific treatment for PTS. Treatment is directed toward the specific symptoms that are apparent in each individual. Treatment may require the coordinated efforts of a team of specialists. Orthopedic surgeons, neurologists, neuromuscular disease specialists, pediatricians or general internists, and other healthcare professionals may need to systematically and comprehensively plan an affect individual’s treatment." https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/

Is it possible to get a second opinion at a large medical center, like Mayo Clinic, where your partner would have access to a team of specialists?

Hi, @stacy88 , I’m so sorry that your partner has Parsonage Turner Syndrome. I, too, have had this since 2017 and have similar symptoms to his. I have constant pain and tingling in both hands and in my right forearm. I have very limited use of my right hand. I’ve learned to write using my left hand which isn’t affected as much. The main thing that helps the pain in my hands is wearing compression gloves. I also take pregabalin, but the only way I know it is helping is that my pain gets worse when I have stopped taking it. In other words, my pain is still quite bad (7-8) even with the pregabalin.

I would recommend that your partner see a pain management doctor if he is not seeing one. I also recommend joining the Parsonage Turner Facebook group. There’s over 1500 people in the group and a lot of useful information.

I hope your partner finds some relief from his pain and gets the help he needs.

Need advice.

I was in a car accident in July of 2020. First symptoms began 2 days later. Severe difficulty breathing. Muscle spasms in front right chest. Symptoms were most severe at night. Could not lay down and walked and paced my house in tears for months.
The VA at the time treated me symptomatically- I did not have civilian insurance at the time.
MRI showed damage to T spine pro dominant at T9 touching root ganglion. Protrusion/Extrusion throughout spine along with C spine issues from a previous C6-C7 surgery

Months later-after failed care with the VA -I received insurance and contacted Vanderbilt. By that time I could barely function and was unable to lift my right arm and lost complete grip of my hand. There was pain in my shoulder and pain in front right going under right arm through back

I was sent to a Vascular Surgeon who determined I had Thoracic Outlet and surgery was done removing 1st rib and scalene muscles.

Although this did NOT stop 🛑 my pain even after steroid injections for what now was also occipital neuralgia

Everything continued to get worse

After recent CT scan it revealed possible Parsonage Turner. I am now unable to work and can barely function
I have difficulty breathing at times, severe pain in my chest, muscle spasms to name a few.

Any advice or guidance would be appreciated. I have the same pain I have had since the accident. I am exhausted and don’t know who to trust now and/or what to do?

@lia1970 I wanted to welcome you to Connect. If I understand correctly, you had cervical spine surgery, then later had the accident in 2020 that further injured your spine at T9 and developed thoracic outlet syndrome from this accident to be later identified and treated surgically at Vanderbuilt. I am a cervical spine surgery patient and I have thoracic outlet syndrome. My doctors have been treating my TOS non-surgically with physical therapy with myofascial release. Undoubtedly, from your injuries and surgeries, you will have scar tissue, and scar tissue internally in the fascial layers. MFR can treat internal scar tissue with gentle stretching. MFR gets the body better aligned and can reduce pain by releasing tight tissue. It has done a lot for me for TOS and helped me have a successful cervical fusion. I still continue to do fascial stretching when tightness comes back again..

Here is our discussion on Myofascial Release.
> 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/

There is a provider search at http://mfrtherapists.com/

It sounds like you have been through a lot. Personally for me MFR therapy has worked wonders and given me back more normal functions. TOS does affect my breathing because it makes one side of my chest tighter and that can affect the lung on that side because it doesn't move as much, so then phlegm can stagnate from my allergies and asthma and easily turn into an infection. With your description of severe difficulty breathing, has anyone tested the functioning of the nerves that send their impulses to your lungs? There are patients who have lost functioning of the phrenic nerve and have a paralyzed diaphragm and there are some discussions here on Connect about this topic.

How is the functioning of your arm and hand now? Did the surgery for TOS help that? What are you doing to treat your pain? Are you still having trouble breathing, and does that get better or worse at times? Can you share what your doctors said about all of this?

The surgery I think was a mistake. I recently had a CT scan and it was noted to look at Parsonage Turner Syndrome. I am still having the same issues after the surgery and after researching Parsonage Turner, I think the Thoracic surgery was a huge mistake!!!
The pain has become debilitating and for the 2nd time since my accident, back on FMLA. It has been a long difficult road and I think some of the Steroid injections I have received for my other T, C, and L spine issued only masked-temporarily-what has been the issue all along. I am exhausted both physically and mentally. I was advised by my PCP to contact and Ortho surgeon regarding the Parsonage Turner diagnosis.
Medications have been Pregablin, Baclofen, and 3 times stronger pain meds-Oxy-which ironically may make me feel relief in my head better-actually makes the pain scream louder so I do not like to take those.
It has been a roller coaster of pain, sleepless nights, and miserable daily existence. I will begin a new pain clinic on Monday-I decided to leave the VA pain clinic-so I am hopeful that maybe they can help me to regain some mobility. I cannot begin to stress how challenging this has all been. Simply exhausting.

Parsonage turner syndrome
Does anyone know of a doctor who specializes in this disease in indiana 🤔.
Mom has had it for 3 years and can't find anyone who can help

@kel2 Your mom is so lucky to have you helping her. There are a couple of things you can check out. Find a good university medical school/hospital or comprehensive medical center. Call and explain the problem and say that your mom needs help. That’s what I had to do. I got an autoimmune neurological disease and the doctors here had no idea what it was or what to do. My husband called the university medical center and asked for help. They gave me an appointment with a wonderful doctor whom i still see.
You can also try the Mayo Clinic Care Network, which has hospitals in many states.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/
Will you stay in touch?
(I’ll need to fix the link on the Mayo Clinic Care Network. I’m sorry)