[arlsandstrom]

Hi everyone,
i have a question. i am trying to figure out how bad my daily life is with TOS. there is so much i can't do, but so much I can do. i have a week every month where the ribs raise in a flare up with hormones swelling my whole system putting extra pressure on my extra rib area and whole thoracic. Before I list what I can't do, I want to say that I love my life as it is now. I am singing lots, even on classical radio this week in Australia. I love the choirs that I conduct and the kids I teach. Life balance is pretty good but for the chronic pain, tiredness, grumpiness and brain fugg.

So what is all this worth if I can't;

Cuddle my husband on the lounge
Feel my left pinky
Cook, chop, stir, bake
Carry groceries
Swim
Yoga
Clean my house
Hang washing out
Lift stuff in general

When it hurts to;
Play piano ( left hand)
Do actions to songs with kids
Type, write,
Play computer games ( first world problem )
Drive
Hold folders of music
Put petrol in the car

When I suffer most days from;
Headaches
Stiff jaw
Stiff nck
Neck and back pain
Hand numbness
Shoulder pain
Elbow pain
Thoracic pain whe the whole area throbs ( luckily only occasionally)

When I am spending $100 dollars a week on a mixture of chiro, Alexander Technique and massage. not to mention specialists -instead of nice shoes. Sure it keeps me mobile, but I am willingly subjecting myself to a fair amount of pain twice a week on the table just so I can rotate my shoulder sometimes.

In my journey figuring out TOS with extra cervical ribs recently I have had a lot of help from various practitioners. i decided that i just didnt want to sit around being affraid any more. So instead of being angry and sitting around in pain, i decided to go for all the testing i could afford. Starting with a sports medicine clinic, i have finally had somone with TOS knowledge listen to me. He ordered a nerve conduction test again as the last results were inconclusive. Apparently my nerves are all fine.

the next hurdle is a vascular surgeon again. The last one said lets whip those ribs out, how about next Tuesday? I did not. That was in Dec 2012. Since then with Chiro, massage and Alexander technique, my overhead loss of pulse seems better according to my chiro and the sports Dr. So please wish me luck for October 9 for my second opinion. I love my life, I really don't want to take 6 months at best out for ribs each side to be removed. And God only knows what I will be like after surgery of that magnitude.

So how do I compare apples and oranges with a life on ibuprofen and codeine and 1out of every 3 1/2 weeks where I am on four hourly meds and a ***** to anyone who comes near?

Thoughts? Comments from this amazing community of sufferers?
How bad is it compared to what you are going through? Is there a scale for this sort of thing. It is hard to tell as it is just my life, the more I do the less I think about it all, but then I also have to take more drugs to keep going.

All my best wishes to you all as we make lemonade out of lemons.
X Anna