Guest Post ~ Teran

Today’s guest piqued my curiosity when I read some posts of hers in a TOS support group about how she ran a race. What?  A TOSer- running?! 

OK, I have to admit here, I was a bit jealous, and annoyed by her posts. 

“Well, she must not be in very much pain then, might not even have TOS, or else she had a very good outcome postop to allow her to run, because no way could I, or many of the TOSers I’ve spoken with, ever do that. I can barely walk a couple blocks, with my arms bent up to decrease swelling and nerve-tugging pains…and she is running?! “  Those were my thoughts.

I'm admitting those thoughts you to all because I want to keep it real.  It can be difficult to be happy for the good outcomes when years of living with TOS does not turn out as well for you. 

However, since reading Teran’s posts, I've thought about what she shared. I've also recently been sent to physical therapy and am just beginning to have a glimmer of hope some things could change for the better regarding my TOS symptoms, which helped me to be open to Teran’s experience. Her story is relatable to all of us who live with TOS, and is so encouraging to me. I hope it will be for you as well.

Here is Teran’s TOS story~

Hi Teran. Thank you so much for being willing to share your TOS journey with all of us. Tell me, what type of TOS do you have, and what was your journey to being diagnosed?

I was diagnosed in March of 2012 with NTOS (neurogenic = involving nerves).  In January 2012 I began seeing an orthopedic surgeon who specialized in the shoulder, and he ordered tests to find out what was causing the pain. During that time, I started going to physical therapy and was diagnosed by two therapists at the clinic.  I knew it wasn’t good when I heard them both say, ‘TOS’.  I had heard of thoracic outlet syndrome.  A year earlier, I met a person who had TOS so I decided to go home and research it. I thought to myself, "I would never ever want to have TOS.” I went back to the orthopedic surgeon who confirmed the diagnosis.  

Can you describe your TOS symptoms when they were at their worst?

At my worst, I was losing use of my right arm. It progressed to where I couldn't write or use the computer without a lot of pain, and I couldn't lift anything. I remember not being able to lift a gallon of milk.  It hurt to drive, and it was painful to sleep.  I had to stop running, an activity that I loved. It hurt to walk because of the swinging of my arms.  I do have long transverse processes at the end of my ribs which the docs think predisposed me to having TOS, but the injury ( I was reaching back and down behind me with my right arm to pick up a heavy bag) is what caused it.  I had the numbness of my fingers, hands, and arm. I also had the pain and weakness. I also had intermittent stabbing pain. I also had the cold hand. 

What type of treatment have you pursued for your TOS?

I had surgery in August of 2012.  I had the rib resection, pec minor release and scalenectomy, the transverse process (extra rib growth) was not removed.  I do remember the surgeon saying there was a lot of scar tissue. I had various complications after surgery which all seemed to resolve with time.  The post surgery physical therapy has helped tremendously. I still go once a week or once every two weeks. My PT is a manual based therapist who specializes in upper extremity disorders.  It has really worked wonders on me. He starts off with ultrasound, and then massages the area.  After the massage, he stretches and then ices the area. I do stretches multiple times a day, just whenever I need it. It took about 12 weeks for the long thoracic nerve palsy to improve enough to start working out again.

Wow Teran!  You've come from not being able to lift a gallon of milk, and having numb, weak arms to going back to working out and running?!! That is so great.  How did you do that?   I mean, do you think it was just the medical treatment and physical therapy, or are there other factors you think contribute to your doing well?

First of all, I don't think I would be able to maintain an active lifestyle if it weren't for the surgery and physical therapy.  I also wonder if having surgery soon after the diagnosis of TOS was helpful in my recovery.  Secondly, I believe I am a 'half glass full' kind of girl. I have been through many adversities in life and this is definitely one of them.   I have seen different ways the Lord has used TOS in my life, and while it has been hard I am thankful.  In addition to my faith, I have quite a bit of family and friend support.   Lastly, I think it’s important to take one day at a time.  None of us know what tomorrow will bring so we do what we can with the time we have.   

Any thoughts or advice for others living with TOS?

TOS is hard.  We all struggle in different ways and to different degrees, but we share a common bond.  

I do believe that with TOS comes a huge loss that needs to be grieved. 

 I also believe in getting plenty of rest and moving my body. We can't all do the same type of physical activity, but it's important to find an activity that you enjoy. There may be some days you can't do it and may have to rest or find something else you enjoy. I love setting goals, and one of my post surgery goals was to complete a marathon. I tried twice before and got injured both times, but was determined to do it. I found a great run/walk program by Jeff Galloway http://www.jeffgalloway.com/about/ and used it to complete a marathon in April.   One of my favorite quotes is; 'You are not in the waiting room of life.'

I was at my son's flag football party last weekend and was about to start scooping ice cream for 30 people. I asked a friend who happens to be a physical therapist if she could do it for me. She said (no ill intent at all) that I could complete a marathon but couldn't scoop ice cream? I said, "Yep. That's right!".

I may not know or understand why I have gone through certain things, and may never know this side of Heaven. However, I firmly believe that God has used various trials in my life to shape and mold me into who I am today. If I am able to walk alongside someone who is undergoing similar experiences or help in any way, it is good. And I am grateful! I believe we are meant to be in community with one another and it can look different to different people. 

It can be very meaningful for someone to be able to say, 'I understand what you are going through, and I am here for you.'

~ ~ ~

Thank you Teran.
If you have comments or questions for Teran, feel free to email her.

Gentle hugs~