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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 13 hours ago | Replies (7067)Comment receiving replies
Hi, my name is Ute. This is my first time on this blog, and I found your reply to Jennifer helpful. As you, I have been dealing with chronic pain now for eight years. I suffer from brachial Plexopathy, a peripheral nerve condition, following a fall that displaced my clavicle. Damage to my brachial plexus only manifested itself nearly a couple of years post 2009 injury. I lost function in my arm and hand on a week-by-week basis. Then the excruciating pain in my shoulder and upper arm began and has not subsided since. I was an enthusiastic hiker and climber here in the beautiful PNW where I had moved to from a Miami, Florida, to pursue my great passion as frequently as desired. My condition has ruined that. I can no longer wear a pack, and hiking/climbing mounts trails is too painful for my left extremity. Starting in 2016, I travelled out-of-state to USC, Mayo Clinic, and Washington University. All in all, I ended up with a prescription of Hydromorphone to get me ready for a Fentanyl patch, and a wrist fusion just six months ago that keeps my hand adhered to the wrist.
Opiates do not work for nerve conditions, and anticonvulsants and antidepressants make me sick and more suicidal. My PT can no longer help me. I keep fit despite the pain, hoping to get back into my beloved mountains and forests that I am bonded to. Fate perhaps led me to your comment when I first opened the blog. There you mentioned John Barnes and your intensive treatment at his facility. Looks exactly what I am looking for. Being very body self aware, I have experienced this myofascial release inadvertently on occasions. I don’t know how long ago you were at his facility. Is it still helping you? And, if you don’t mind, what was the cost for this intensive 2-3 week therapy?
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@adalwolfa Welcome, Ute. Was there any surgery offered that could help you with the displaced clavicle? I know someone who had a congenital problem with the clavicle where the ligaments were small and weak and lost their connection to the sternum. She had surgery to reattach them, but it isn't a great solution because they will move more than they should even though they are attached. She can use her arm, but can't lift or raise it much. I got the impression from what she said that there are very few surgeons for that kind of problem. Do you still have compression of the brachial plexus from the clavicle? Since you have been seen at Mayo, you might want to connect with the department with Regenerative Medicine studies and see if there is anything you could participate in. I don't have any experience with that, but the are having some good results with stem cells with regeneration of the spinal cord in a patient. That was just in the news feed.
I have not had an intensive MFR treatment, but my therapist does MFR with me every week and told me about it. The cost might be a couple thousand dollars from what she said, but only the provider can answer that. They have 2 locations, one in Sedona, and another. There is a provider finder on the myofascialrelease.com website. Here is our myofascial release discussion where there is a lot of information and links. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I have done MFR since about 2012 and my PT is an expert level in the John Barnes methods. I do a lot on my own at home which helps my progress with thoracic outlet syndrome. In the middle of this, I had cervical spine surgery, and I am back working on the TOS again and making progress. I have lived with this for years, and it takes a lot of work and patience to work through the layers of tight tissue. There are also workshops around the country from John Barnes and some are geared for patients. He could be there, but not always as he is older now, and has a lot of his PTs teaching his methods. It would also be a place to connect with MFR therapists. From my personal experience, MFR helps me a lot, and I keep it going by adding my efforts at home, so I have self treatments most days with only one session with my PT. If I was to stop stretching on my own, I wouldn't progress anymore. Once you get the body moving properly again, you have to keep moving to avoid developing more problems.