Hi Tracey,

Things seem to be a little different down under. I dont know anyone with TOS or anyone thats actually even heard of it, some Dr's included. I dont know if its because of our smaller population? I dont have a specialist that I regularly see just my local GP who helps with pain meds. Although I do have test results that CONFIRM that I do indeed have TOS, it's not a maybe with me. I had a Arterial Doppler Ultrasound which shows "on mild abduction of the left shoulder and extended abduction of the right shoulder reduced velocities and dampened flow develop within the axillary arteries, which return back to normal when the patrient returns her arm to the resting position. On the left side, with abduction marked reduction in velocities and dampening of flow is demonstrated within the left axillary artery" Then I had Venous Duplex Ultrasound which showed "On abduction to 180 degrees there is a complete occulusion of the left axillary vein and significant dampening of the waveform of the right axillary vein. These sonographic features are consistent with bilateral thoracic outlet syndrome which is more marked on the left side.

As I am a workers comp case the insurance company sends me to many doctors but as they are for the insurance company, they wont tell me anything! I was medically retired from my government job in Sepetember 07 after being off work for 2 years. I sometimes get confused with the terminology used in the USA, especially when it comes to WC and payments and meds. I do get a statutory rate of workers comp with is around half my annual income.

As to what type of TOS I have all I know is its a painfull type!!! Someone maybe able to tell me exactly what type I have. I would presume I have both types as I have the artery and vein involved. As previously stated, my worst symptoms would have to be my daily headaches and facial pain. I havnt had a day without medication for years. I take panadeine forte, lyrica, proxan 1000 (anti inflam) and valium (there my main meds of the day). I take these daily.

I also have C5/C6 disc protrusion and C7 nerve entrapment. Again, these have been diagnosed with a MRI scan. So as to whats causing the headaches/facial pain, im unsure which one and so are the DR's. I do have the arm change colour stuff happening and a lot of other symptoms that I know are from TOS.

Im not sure if your from the USA but I feel that they have the best advice / care over there. I get very little support in Australia. Good luck on your TOS journey. PM me if you would like to know anything else!

Ozzy

Hi Ozzy,

Im from the UK and like you feel that there is little knowledge (or perhaps understanding or acceptance of it) by the doc's over here!.

Im going to have a MRA to look at blood vessels next friday, think they will take it with my arms by the side and then up over my head, whilst lying down. My pulse does diminish on the adsons test so seems that vascular tos is something i probably have!. Sounds like your symtoms are quite similar to mine - colour changes etc.

Have you had any surgery?


This forum seems fantastic for support - i felt like i was the only one suffering until i stumbled across this website!....everyone has been so nice and helpful

I get dizzy a lot when I stand up and a lot of times pass out when I get half way across the room. It takes me a little bit to get myself orientated agian.

Ozzy,
[I have been asked to go to the university of Sydney and let the students have a look at me, so i do know that my condition is considered rare.]

If you are up to it - that could be a big educational thing for those medical students - to see a TOS patient first hand - they might really remember the condition and symptoms when they are doctors.