Hi all, have read a parts of the forum and am now completely confused about TOS!
About a week ago, I lost complete feeling in the middle finger in my right hand. The finger turned very pale, became blue under the nail and had dark marks down one side that looked like bruising, only wasnt hurtful to the touch, however the finger was extremely cold and lacked response.

Since then, was referred to a hand surgeon. Thought it was Reynaulds and sent me for an emergency angiogram CT scan. Had 2 of them on the same day followed by an ultrasound but there was so little blood flow they couldnt get a picture. Next day, went back for an upper body angiogram CT scan + Xray and my hand surgeon has now said they clearly see the I have TOS.
Off tomorrow to see a THoracic surgeon.

Been a bit blown away by the speed of it all. Blood thinners and anti coagualants have helped with the colour a bit but still feels as if my finger is in a bucket of ice.

Having read the threads, some people are in immense daily pain and my heart goes out to them.
My hand surgeon said I have probably had this for about 10 years, pain off and on,taken tablets, done regular physio to ease symptoms, however it has now progressed.
Does TOS stay static or does it increase over time, ie will it just get worse in years to come? Am only 39, have 2 kids under 6 and certainly need as much hand mobility as I can get.
Also, we have moved to Singapore and will be here for 3years (already have done 1.5)
Will be returning to Perth Australia and unfortunately dont think my insurance will cover when I return there as they will say I developed condition when not under their coverage. My current singapore insurance will pay for all costs, so if i do opt for surgery, the next 12 months would be the time.

I know I am probably a minor case - but no one seems to have mentioned previously that they were categorically diagnosed by an angiogram ct scan, bit worried that my hand surgeon made it sound so cut and dried. From reading elsewhere seems as if its quite hard to diagnose this condition.

Any advice please!
Thanks

Hello,

If it was me I would ask the Dr "what exactly did they find that shows TOS"?

what exactly is causing the compression to blood flow
why only the one finger affected? - unusual
extra cervical rib?
one side involved or both sides?


Do you have any other symptoms in your arms, or neck, or shoulders like you've read about here?

If you have a blockage, or compression by something that shows very clearly on imaging then a diagnosis is much simpler.

Many of us have a chronic form of RSI that is mostly soft tissue based ,with sticky fascia that adheres to the various muscles & nerves or blood supplies and after time hardens or causes scar tissue. A very very brief & simplified synopsis.
Most of the soft tissue problems won't show up on imaging.

Be very sure to check out the surgeon if you opt for that- skill & experience is key.

but I am very curious why the one finger showed the symptoms like it did..

These are all great questions and I am going to see the surgeon tomorrow and now at least I have a direction for my questioning.
The Hand surgeon says there is a clear compression, will ask what by.
How do I check out a surgeon, just research him by name on the internet? My hand surgeon said he is the only one in Singapore specialising in this area, guess there is not as much choice here.
I have always had on and off problems with the right side, numbness of the wrist.
The hand surgeon says the blood flow is extremely low to the wrist at the moment and that the whole hand is affected, just that one finger is the worst by far, guess its the longest extremity.
Thanks for your help, will post again when I have seen the surgeon

It sounds like you may have experienced distal embolization, where a part of a clot in the subclavian artery breaks off and travels to the hand. I would ask your surgeon if this is indeed what happened.

Well, not great news.
He talked through the condition and I have arterial TOS. THe 1st rib and the collar bone are clearly compressing the artery when I raise my arm. THe angiogram showed that with my arm above my head there is a 2cm compression with absolutely no blood flow.
He has said in this case PT will not provide enough release for the artery. Went on to have neurological tests and there is mild nerve damage on the right side
He told me that I have had this condition a number of years and a recent case of bronchitus and the coughing just compressed the artery to a critical level.
At the moment the blood thinner and antcoagulant are working, the colour has returned to my hand but still less sensation than the other side. However I am not to do any exercises that involve raising my arms!!!
I am going to PT on Monday to show me what I should be doing.

He is recommending surgery to remove the rib. THey (there will be 4 specialists, neurosurgeon, vascular surgeon, thoracic surgeon and another one, forgotten who he was) will go in through the neck and remove from that postition. He thinks to go in under the arm is more difficult as ladies have larger fat deposits to go through and its hard to stem the bleeding from that position.

My arm had done 5 days withe little blood flow and I was lucky I sought a doctor at the time. He taught my husband and I to take my radial pulse, if we cant feel it we must go to the emergency room and seek help.

He has said that if I dont have surgery now I will need it further down the line and as I am now I cant do much lifting, or arms above my head and possibly it will be emergency surgery.

My arm is not in pain but slightly dead and heavy and I have noticed a lack in dexterity with my right hand even on the drugs. THe fact that I am not in excruciating pain makes me think do I need this? I guess if it was pressing o nthe nerves as well it would feel very different.

Been a bit blown away, Monday I went to the doctor with bronchitis and a numb finger and by Friday we are discussing 3 hours of heavy duty surgery. Welcome to the efficient Singapore health system!!

As there are very few thoracic surgeons ( he is the only one that does this operation)here, am hoping to find another surgeon in Sydney or Perth. Hoping to be able to courier down the scans and test results and do a phone consultation for a second opinion. Its not that I am not confident in my surgeon but think its prudent before

Am seeing the thoracic surgeon again on Monday for further discussions

Second/or more opinions are always a good thing , then you are more confident of any decision, and less "what if's" afterward.

After having a second opinion, he recommended to have an groin arterial angiogram to see the state of the artery.
Wow......its an invasive procedure and from the view it looked as if all might be ok. My hopes rose and I was planning to go back to the gym the following week!!!
THey then recommended to go for a TOS blood flow test. I didnt even know such machines existed. The results clearly showed that with the arm raised very little blood is flowing to the right wrist.
At least the artery is in good repair and wont need to be replaced. That afternoon, back to the thoracic surgeon and in for surgery on Tuesday for a scalenectomy and 50% chance of rib removal.

I dont think there there is any other test to be done that I havent had in the last week. I can honestly say they have done everything to assess my situation and now I am resigned to just get on with it.

I have been staggered by how thorough and fast assessments are done here in Singapore, its not unusual to see 3 specialists in one day, they just seem to make time. My Thoracic surgeon has been brilliant hand holding me through the tests and as soon as he makes a decision, he is on the phone there and then arranging the next specialist, giving directions to the office and even ringing on a Sunday to make arrangements for the next day. If he is not available when I ring him its because he is in surgery he hasnt failed to ring back straight away when he is out. Have certainly learnt a different side to Singapore.

So been told to expect 4-7 days in hospital and folllowed by 12 weeks of intense physio. Am confident in the team (looking at the estimated bill am sure it will be ferraris all round!) and my problem will be solved soon