I totally agree with you there Jo.


I have just come back from my family doctor who has already had correspondence from the vascular surgeon. I have an extra rib which is what not I was expecting. When I saw the surgeon on first consultation the other week he was concentrating on a particular area which now I believe to be where the extra rib is. My radial pulse is very weak when arms are beside me. This is something I was certain was happening but now I have it confirmed. I still have to have a MRI with contrast to check if there are fibrous bands and it's this that will determine how the surgeon approaches the surgery. He has said I have not only venus TOS but also arterial and neuro TOS. On a good note my blood clotting medication has been changed to Pradaxa which I have been waiting years to have. This drug will make it easier post surgery to make sure I don't clot but will also be a lifelong drug because I have suffered 2 clots in my lungs as a result of my TOS.

The MRI is posing difficult to obtain fully covered in my local hospital in Australia. I know when I have had the previous blood clots that the MRI department did not want to do the tests the doctor had ordered. As my surgeon is a consultant at the hospital he should be able pressure them to do the test or refer me to another MRI company who run out of one of the other hospitals. At the end of the day with my local hospital it's about cost cutting and not that they don't do the test. They tried to tell me they don't do the test but i have had similar there before but it was radioactive iodine and this time it's not radioactive.

I will post any updates as they happen to save me typing lol

Hi I have seen neurosurgeon and neurologist in Victoria, the look you get when you describe your symptoms! Have not been diagnosed with TOS my GP and PT both say possible TOS has been 5 months since I injured my upper back at work. Could you let me know the name of the specialist you are seeing (are you in Burwood Vic or NSW? and maybe he/she could HELP me shed some light on my pain, numbness, tingling, chest pain and the list goes on...
Thank you

Hi Dani

I am in Burwood Victoria. I see a Vascular specialist Mr Adrian Ling http://veinarteryspecialist.com.au/about-mr-ling It's very hard to find the right Dr but if you do have TOS Dr Ling will be able to tell you. He is more thorough than any Dr I have seen with x rays and MRI/CT contrast to see exactly what's going on with all the structures not only just the veins.

Are you from Victoria?

I had my results consult with my Vascular Surgeon yesterday. Found out that I don't have an extra rib alhough he did think I did when feeling that area. It's my 1st rib casuing some problems and yes he will do surgery. He wants me to see a neurologist and have nerve conduction tests first so he knows if there is anything there that he needs to be aware of. He mentioned focusing the nerve tests on my head, neck and chest/shoulder area.

We discussed my reasons for surgery
1) To try and prevent compression of the subclavian vein and more clotting
2) Prevent further damage to structures
3) Give me a better chance of a better quality of life

I know removal of the 1st rib is not a cure but it hopefully will be a good outcome and less pain and enable me to function better and do things even if their small things.

The wait to see the neuro was going to take 3 months but after speaking to the neuro's receptionist and saying 3 months was a long time when my vascular surgeon needs the consult to go ahead with surgery. The neuro phoned me back and said she would see me on Monday which is a huge relief. At this stage September/October is when I am likely to have surgery providing there are no hold ups with the nerve tests etc....

I am anxious to have the surgery done but I guess my Vascular surgeon dotting and crossing everything off his list so he has all the information available to him when he does to the surgery.

I will update after my neuro consult. It's good to know she does see a lot of patients with migraines. I suffer them pretty bad and they are related to my TOS symptoms. She may be able to shed some light on them too and why I get them.

i went through with the surgery and it was not a 100 percent the only diff now instead of my are being very dark blue it is now a light blue and still no pulse

I think the outcomes for us all are different depending on the surgeons skill, what damage already done can't be repaired and being aware of that pre surgery. Any improvement even if it's only small is a blessing. It's the long term damage I am looking at preventing by having the surgery so any improvement is a good thing. Sorry your outcome wasn't as good as you had hoped rad. How long since your surgery and what did you have done?

OzKira- I'm so glad to hear you're making progress with appt and your surgery. First ribs can be very pesky- I've now had both removed. Its great they were able to move up your appt too. Good luck!

I went to see my neuro earlier this week. She thinks my current right arm pain is another clot. She was looking at my CT scans when she said this. The CT didnt show her all the structures she needs to see in the brachial plexus. She works in one of our large city hospitals and managed to get me in for a free MRI with all the extra's my vascular surgeon wanted. The hitch is it wont be until October 3 because they are that booked out. Thats ok with me I just have to make sure I dont do anything that might move the clot in the mean time. I go back to her on the 10th Oct and she will do the nerve conduction test then. After that it's back the the vascular surgeon for the next stage of planning my surgery with all the info he needs. I am going to get my GP to do D Dimer and full blood tests just in case they need to know how the bloods are going.

At this stage it looks like surgery wont be until the new year sometime and in the hottest past of summer here in Oz.

I feel like a yoyo back and forward for Dr's and tests but thats part of the TOS journey

Only a few weeks until I find out more. The past 2 months have made me feel like i am in limbo but I have been busy planning a house move but taking it slowly with the packing to avoid flare ups. There are some positive things in the new house that will made some things easier especially when I have surgery. It's also less drafty and has air con which is a bonus with summer fast approaching here. I will check in again after I have my MRI and NCS. After that I go back to the surgeon to talk surgery.

I hope everyone else is traveling ok

I hope you restrict yourself to light packing and unpacking...NO MOVING!

It's easy to get sucked into doing too much once moving day arrives. It has happened to me on multiple occasions even though my family knew I was sick. Just a result of poor planning and my own guilt sitting on the sidelines watching my wife & elders struggle. Hopefully you all plan ahead as best as possible.