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

Hi, Yes I do think I have vascular TOS as my pulse also goes away. Your test sounds similar to what I had done, it was like a ultrasound of your arms. Im not sure if its called something else in the UK.

You will find some fantastic people here and some excellent information from people like Jo etc.

As for surgery......I would like to have my C5/6/7 problems fixed first to see if it makes any difference. The Dr's want it the other way around they want me to have the TOS surgery then the neck surgery. Also, there are not many Dr's who have performed TOS surgery and the Dr I did see (that was a hand surgeon) told me I would be her first TOS patient. She was located in a rather large private hospital in Sydney. After what I have read here and the stories I have been told I have decided against surgery at the moment. I know there are a few people that have had sucessful surgery but there are more who havnt. I either find people end up with scar tissue build up which cause their TOS to return and starts a whole new round of problems or the TOS just returns on it's own after a few years. I think surgery is a very personal choice and some people are just in sooooo much pain they will give anything a try. I am not to that stage yet, thank god! I can take the edge off the pain although can not be pain free. I am extremly scared of surgery and cried when they put me under to have my wisdom teeth out!

I know the Dr's accept what I have as my test results state that but I feel that I just get pushed from Dr to Dr. I get referred onto new Dr's when my current specialist doesnt know what to do with me. 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.

I was once told by a physio that "TOS is not a very nice thing to have but it wont kill you". So considering that I thought I might have a brain turmour or something very sinister prior to my diagnosis, I count my lucky stars that I dont.

Continue to get support and ask all the question you like, there are some people here that know more about TOS than any Dr I have seen. You will benefit especially as your not in the US. They seem to have all of the upto date information.

Talk to you soon.

Ozzy (Lisa)

Dizziness oh yes and headaches, well migraines actually. after second surgery 2005 the migraines seemed to go and only get hormonal ones, but in last 6-8 months migraines back more frequently....

Best wwishes to everyone.

Hi Lisa,

The adsons test is: (pasted this in from a website)

The test is performed as follows:
1)Monitor the patient's radial pulse at the wrist while you abduct, extend, and externally rotate the upper extremity at the shoulder joint (keeping the elbow straight)
2)Have the patient take a deep breath, rotate, and extend their head TOWARD the side being tested
The test is positive if there is a marked decrease or absence of the radial pulse.

i know the ultrasound test you have had done, in uk its called doppler test....the dr im seeing was initially going to refer me for that, but changed his mind to an MRA (like an MRI, but looks specifically at the blood vessels). Not sure if an MRA is the correct test for me, but if nothing shows on it then im going to push for a angiogram or the ultra sound test.

it does sound very difficuly in australia, perhaps you could consider a trip to the US where there seem to be lots of dr's who specialise in TOS!.

Our symptoms do sound fairly similar, i would be fairly cautious about surgery too, if i ever needed it then i would not want to be their first TOS patient - scary thought!!

Take care

Tracey