I wish I could stop work but I need to pay my bills. I don't get paid if I don't work. My position is one in which I have no benefits...no vacation or sick leave...nothing. I also don't want to lose my job because I take off.

Quick question about symptoms....I sometimes notice my arm will get really red almost bluish or purple in color with white spots on it...is this a symptom of TOS?

Hi, I do not intend to scare you but this can be a symptom of blockage of blood flow to the effected limb. If it is your hand and arm then there could be some sort of blockage of blood flow in and out of your hand or arm. You need to be VERY VERY careful with tos that is vascular in nature as you could get a potentially dangerous clot that could start in your arm and move to your lungs causing a pulmonary embolism and could cause you to have major breathing problems and if it were to move or another one to form it could go to your head causing a stroke.

You need to see the doctor ASAP about this type of swelling and make sure you know what is going on. If you do have a vascular type of blockage it needs surgery immediate. Go to your doc asap and get this seen and looked after the risk of a clot is not worth it!!!!

U need a veinogram and a doppler ultrasound to see about the blockage.

Just advice from a fellow vascular tos pt. and a nurse.

take care,
love and hugs,
Victoria

Ahh.. some problems all your life - then you just may need that extra rib removed.
The color of your arm could be due to the c rib compressing on a vein- does it swell then too? If this is what's happening there is a possibility of throwing a clot, I think only 1 or 2 here had that happen, just wanted to mention it as a general warning.

You might be wise to look around for expert Vascular or Thoracic?? surgeons in your area and consult with them.

If a dr writes a note saying you are not able to work at all you should be able to get some sort of disability pay.

do you have insurance?

But please do get this taken care of and do not ignore it.
It will only get worse and may become a chronic life long condition.
If you have to go on to state aid of some sort, short term disability...

Have you had time to look thru the useful stickys?
there are drs sites listed in post # 1 that explain about the c rib and vascular /nerve components .

Thank you for all of the advice. I was in so much pain yesterday that I just didn't want to even touch the computer. It seems as if the pain is worse on some days and other days I am able to cope.

I do have insurance...my husband is military so it's not the greatest but hey better than nothing. The problem with finding doctors is that they have to be approved by my insurance company. Right now I am just at the beginning stages of getting help for all of this. I have an appointment on Monday with my new PCM. I will ask him for a referral hopefully he will be willing to do that. I just don't know where to start. Should I go to a neurologist or a vascular doctor first. Who does all of the tests for thoracic outlet syndrome? I also have an appointment with a new pain management doctor thankfully. I am hoping he can help with sever pain that I have in my upper back, neck, chest and shoulder blade.

If you have a or can get a list of Drs & PT places accepted by your ins - then you will have a good starting point.

most ins co. have websites { providence, aetna, blue cross , etc.} you can sign up on and then do searches for covered providers from that.

then with some names you can cross check {google or??} for more info or even locate the dr or PT place's own websites.

If you have or find a PT place that looks or sounds interesting- call, email or even drop in and chat with them about your condition- often they are a good resource of the best drs... I found this little gem out after I had already been with my drs for awhile.
But often the PTs know who the the better drs are.

Were there no Drs/PT in your area - on our listings in the sticky?

did you look at your films, can you see the c rib at all?

I'm thinking if you look at the pictures of back of the c spine - where the C & T spines meet - should be about where the extra top rib should be showing. then find the film showing that same area from left & right sides.. just a thought if you can see it and see if they look large/full vs a partial.
If full/ large you might save yourself time and money seeing a few experienced surgeons that have done these removals.

So asking drs./offices about specific experience of extra cervical rib removal - how many per year, and how many total yrs of surgery exp?
what kind of follow up care?

Mainly you really need to avoid any that might want to just cut and call it good.

I hope our members that went thru surgery will add more - I'm just suggesting general questions to ask drs.

I don't know which kind of dr to suggest- I'd just try to find a very experienced & knowledgeable one and hopefully they will direct you to what you need specifically for you.

if you haven't made a list of all specific symptoms and done a chart showing pain /symptom location - that is a good place to start.
we have a chart you can print out in the useful stickys-* well maybe I am wrong - I'll find one.

here is one - I'll add some into the stickys also
http://www.pt.ahs.chula.ac.th/tesamap_pa2.gif

Well I went to my new PCM today and he did some tests and said that it looks like it is TOS. I have to get an ultrasound on my neck and arm to see where the blood vessels are being trapped. He also gave me cymbalta for the pain and depression and lunesta to help me get a better night's sleep. I am just happy that he knew exactly what TOS was and that he is going to help me.

That's great news!! Progress!!!! I hope the meds are good for you When is your next appt for the ultrasound? Keep us updated on the doc's prognosis and how your doing

I just want to thank you all for your help and support. I know that I don't even know you, but this was my last resort....I was getting very depressed and I needed help from somewhere or someone. I figured the internet is the best place because I knew there had to be other people out there going through the same thing. When I stumbled across this website I knew I was at the right place.

As far as the ultrasound...I have to wait for a call from the hospital. They will be calling sometime this week I hope. The cymbalta seems to be working but I still don't know how I will feel being at work and having to stand all day. The Doc gave me a week off...thank God because I didn't know how much more I could take.

Do you think I should still keep my appointment with pain management? I am still in pain with these meds just not as extreme as before.

Hi,
do not cancel your pain management appointment!!!!!!!!!!
this is a definite necessity to keep you sane. You will need to see a specilist to totally go over your meds and offer other options to help to deal with your pain. They are godsends....if you get a good one.
Let us know how it goes. I am sure you will get different meds than your regular doctor gave you. Try to be patient.

Enjoy your week off and do NOTHING NOTHING NOTHING and see how you feel!!! It will make a big difference. Do not do anything you don't need to do. no lifting no using your arm(s) for anything. Try to get help for anything you need. Don't be afraid to ask for help you NEED IT!!! Don't worry people usually want to help if they are your true friends.

Take care and keep in touch we do understand your pain and your frustration.
love and hugs,
Victoria