Parsonage-Turner Syndrome

#MightyTogether #ParsonageTurnerSyndrome

Do you deal with the effects of medical trauma?

Have you been told you need to get over it and suck it up?

Is medical trauma real?

It started out gradually, one day I noticed my arm was aching and it hurt to write or to be on the computer.  Pretty soon, I had a stabbing, unrelenting pain that spread to my neck and shoulder blade – it left me in tears and unable to sleep well.  Before long my forearm was screaming in pain and my hand was numb and tingling.

I approached it in the ‘tried and true’ method of just ignore it and it will go away.  No luck.  I tried resting it but that didn’t help either. Soon the pain was so bad I couldn’t use my arm and even walking was uncomfortable.

“Please don’t let this be another cervical disc and stenosis problem or ParsonageTurnerSyndrome, a rare neurologic disease,” I muttered to myself. My cervical fusion in Aug 2019 had gone well but it was a tough recovery and I really didn’t want to repeat that.  For several years prior to that, I had dealt with PTS which is excruciatingly painful with nerve damage and function loss, with no treatment other than time (often up to a year to regain function) and a pat on the head that ‘it isn’t that serious’.

So, it finally got bad enough I knew I needed to do something – I was now having problems sleeping and eating. I was PCP-less (a story for another day) but I knew I needed help and honestly, I was getting scared it was something serious.

I decided to find a PT but I needed a ‘thinking PT’ to help me figure it out. You know, the kind that doesn’t follow the cookie-cutter approach to injuries and treatments.

But how to find the right person? Luckily, I had met a fantastic PT (a recommendation from a RareDisease friend) who helped me after my concussion last year and she recommended a PT. I found an awesome person to work with – whew, what a relief!

Turns out I have a weak and atrophied shoulder muscle that is causing my issues. Exercises, dry needling, and some Kinesio tape and 2 weeks later I’m 85% better.

Great outcome, Patti so why is this post about medical trauma?

Well, I tore my rotator cuff and had surgery to repair it in 2014. Towards the end of my PT sessions, the pain increased – a lot.  I told the PT “It hurts. Are you sure I should keep going?” The PT said, “It’s normal, keep going, push harder.” This conversation was repeated several times.  I eventually learned to adapt and live with the pain until I couldn’t any longer.

MRI showed my rotator cuff was still torn and never healed completely. I was finally validated but it came at a cost. Cue a 2nd surgery, 12 weeks immobilization, and completely off of work, followed by being laid off when I returned to my job of 22+ years.

Last week, I finally recognized and acknowledged that I have been traumatized by this experience and have avoided all PTs since that experience.  PT after fusion surgery?  No, thanks.  PT to help strengthen my arm/shoulder after ParsonageTurnerSyndrome?  I’m good. I’ll do it on my own.

Not being listened to…having our concerns being discounted or dismissed…not being trusted…not being respected or treated respectfully…being physically or emotionally harmed by our care providers.

Medical trauma is real…it needs to be acknowledged and talked about. The cost of it needs to be looked at in the short term but also the long term when we avoid getting the care that we need because we have been traumatized by past experiences.

If only doctors, therapists, and other medical providers knew how much pain and suffering they caused…the physical and emotional effects of medical trauma on RareDisease patients perhaps they would change what they say and how they do things.

It shouldn’t be this way… and the only way it is going to change is if we can openly talk about it and start working to change the system.  Are you with me?

Have you experienced medical trauma?  Have you found ways to heal from it and to help avoid it?  Please share your story in the comments so we can start learning more about how and what needs to change. #RareDisease #ParsonageTurnerSyndrome

As so many of you survivors know that feeling of hopelessness when another doctor is added to your “necessary” doctor list. The dread. The expenses. The time. The possible rejection. That’s how I felt during my third admission into the hospital in April 2014. My third, in less than 10 days. I was given all different diagnosis’s, from seafood poisoning, to allergic reaction to a medication. On that third admission, I was now paralyzed, I could no longer walk, I was scared and terrified, and I also had severe pain in my left arm and shoulder. I was told I needed a neurologist to see me, since I had already seen almost every other specialist. In my mind, I thought I was going to either die or be permanently paralyzed, and really had no hope this new specialist would be able to help me. Well, this time I was wrong, I was lucky that this neurologist entered my life. He immediately sent me in for an mri, which said I may have #Meningitis, and that I now needed a spinal tap. I was so scared, but desperate to know what was wrong with me. My spinal tap relieved extremely high protein levels in my spinal fluid, which meant I finally had a diagnosis! My Neuro came in and gave me the news, I had Guillian Barré Syndrome. I had never heard of this, I was confused and filled with questions. Some of the answers my doctor gave me were frightening, especially when he told me that there was a good chance I would need to be intubated, because my diaphragm may become paralyzed as well. He gave me hope, so much hope by telling me that I wouldn’t be paralyzed forever. He kept telling me “this is a marathon, not a sprint”. Everyday he came in and would remind me that I was still in this marathon. He would tell me even if I was the same, and not worse, that was a good thing. I was being treated with IVIG, and he tried to find out what caused my immune system to attack my nervous system. After days and days of testing, they ruled out every possible “cause”, and determined it was due to the flu shot I had received a few weeks before. By day five, they still didn’t know what was causing my severe shoulder pain. Just the weight of arm was unbearable. I couldn’t lift my arm, I literally couldn’t do anything with my shoulder, arm, and hand. The only part of my body that I could use was my right arm. I had never taken pain medication prior to this, and even iv dilaudin every 3 hours, along with 3600 mg of gabapentin, and oral Vicodin every 4-6 hours, it still wasn’t enough. They had pain management come see me, and was told once they knew WHY I was in such pain, they would then be able to treat it properly. All I could do was cry and scream, nonstop. For days on end, that’s how severe the pain was. After my Neuro consulted with other neurologist’s, I was sent for an mri on my brachial plexus. Just like Guillian Barré Syndrome, I had never heard of “brachial plexus”. After two hours in an mri machine, my Neuro came in with a worried, sad face. He came to my bedside and said you have something called “Parsonage Turner Syndrome”, as well as Guillian Barré Syndrome. With tears in his eyes he apologized over and over for not diagnosing it sooner. He said after severe burns, and #TrigeminalNeuralgia, it was the considered to be one of the worst pain conditions they know of. They immediately began iv steroids and pain management began to slowly bring up my pain medication’s. I hit the daily max for my body weight. I was also told that Guillian Barré And Parsonage Turner Syndrome (your immune system attacks your brachial plexus in your shoulder) are each extremely rare, and the fact that I had both, was a shock due to the fact all my Doctor’s treating me had never heard of someone having BOTH at the same time. I ended up staying 30 days inpatient, with 15 days of inpatient rehabilitation to work on my balance, walking, standing, sitting, feeding myself, dressing myself, etc. I then began outpatient therapy 3 days a week for almost four months. You know what was crazy? I couldn’t wait to clean my kitchen counters, I couldn’t wait to be able to carry my laundry to the laundry room. The little things I hated doing, I couldn’t wait to do! That’s why I now feel so thankful for Guillian Barré Syndrome and . Unfortunately, theses two conditions have triggered my immune system to attack many different areas of my body, from my skin, joints, optic nerves, tissue, bones. I am now permanently disabled through social security. It’s been 4 years, and I still have balance issues, and I am now a #ChronicPain patient and need pain medication every single day. Yet, wthout these illnesses I would still be ungrateful for all the amazing gifts life gives us. I promised myself I would never miss one or the other: a sunrise or a sunset, each day. I wake up and remember I live in America, have access to the best healthcare in the world, I have health insurance, I have an amazing support system, I am truly blessed. I don’t feel hopeless, I don’t even get frustrated with my disabilities, why? If these illnesses hadn’t come into my life, if I had never gone through such a frightening and frustrating time, I would’ve never stopped and take moments to look at the sky, smell flowers, listen to the bird chirps, or be happy that I can clean, hug my children tighter, sign my name, walk, stand, open a water bottle! I still can’t wash my hair without hanging my head upside down, I still have a hard time brushing my hair, but again, I can stand up! So, please hang onto hope, I love the saying “There Is Always Hope”, because without hanging onto hope we would all just give up! Life is beautiful, wake up each day as if it’s your last, and remember if you have your health, your loved ones have their health, you’re winning at life! Everything else is fixable! It’s temporary. So please, just always hang onto hope.. and remember sometimes life’s darkest days can result in a beautiful rainbow, you may one day be like me and say “Thank You” to your #ChronicIllness!

#ChronicPain