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?
I still have a lot of symptoms.
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.
Gentle hugs~
