Recently, I had the chance to meet up with a fellow TOS-er, Dianna, who lives in my area. Very exciting! We've chatted several times since she saw the listing I posted in a 'Recommended Doctors' file in a facebook TOSsupport group for the surgeon who treated myself and my two kids.
Getting the chance to swap stories and commiserate with someone who really gets it, well it's just really refreshing to not have to explain TOS, or be defensive, or put on an I'm fine face about living with TOS. Being able to just be honest about the crap that living with TOS brings to your life is therapeutic, especially when some people in your life can be dismissive or don't even take the time to try to understand what you are going through because you don't look sick.
It was a great lunch. The time flew by as we talked about our TOS journeys. It was interesting to recognize the same neck rubbing, arm movements, pointing to the same places on our backs, arms/armpits, and heads that hurt.
Lots of head nodding in understanding and agreement as we listened to each other. The only thing I'd change is cushier chairs. We were both sore the next day from driving 40 min one-way, and from sitting for almost two hours in those stiff chairs. If you live with TOS, you understand.
I'm really glad Dianna agreed to be interviewed for today's guest post.
Dianna developed TOS without having cervical ribs. Many fellow TOSers can relate to her situation. Your life was going along pretty well, you're working hard, or playing a physically demanding sport, and pain develops in your arms, shoulder blade, hands, neck, head, chest...you can't shake it. The ache, swelling, throbbing, stabbing becomes relentless. You get referred to several different doctors who have different ideas about what your problem is, and eventually one of them tells you " you have TOS", and that becomes the beginning of a journey.
1. What type(s) of TOS do you have?
I have NTOS. (neurogenic = invoving nerves)
2. What contributed to TOS symptoms developing for you?
Long work hours with heavy lifting, repetitive overhead work, working in unfavorable body positions. This first picture was from before TOS changed the path of my life. I was physically fit and in great shape. The prime of my life and when plans for the future looked pretty good. Little did I know how much would change. I'll never be able to do that type of work again, regardless of if I ever recover or not. It would only put me back in the TOS cycle again. Not that we ever really get out of it. I really believe it's for life.
3. What treatment have you had?
I've had trigger point injections, three rounds of physical therapy, and two surgeries. Bilateral rib resections and anterior scalenes removed.
4. How are you now?
Notably, my hands turn white when raised in an overhead position, arms still tire, and still have a lot of nerve issues especially if I do any one thing for too long. Examples: sitting, standing, housework.
This picture was taken right around the time I was first diagnosed. This one reminds me of how much the little things like holding a baby really mean. After this past weekend trying to hold our grandson my left arm feels horrible. It was worth it though. :)
5. What advice would you give someone new to TOS?
Advice I have for someone new- Talk to your doctor right away, research as much as possible, knowledge helps, be presentable to doctors. Write down all your symptoms for the doctor. Don't take no for an answer. Self advocate.
Please let Dianna know if her TOS story is helpful to you, or if you have any questions/comments for her.
I encourage my fellow TOSers to connect, talk, share, encourage, commiserate, vent- in whatever way you are able. In person is fun, via skype, chatting online, email are all great options. One thing is for sure, for those who are on this TOS journey - it sure helps to have others who understand to talk to about it.