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@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?
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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.