Thanks Blutro, this is great info
I'm getting a 2nd opinion on Monday & will push to have the surgery, as I really don't want to be on blood thinners for the rest of my life.

I'm hoping my Heamo can recommend a vascular surgeon in Melbourne & get the surgery done later this year, to avoid missing too much uni.

Looking forward to Monday, hopefully get some solid answers!

- Jenn

Just make sure the vascular surgeon you select has performed a good number of these surgeries with a high success rate.

Hello from Toronto Canada! I have had a simliar situation as yours (minus the pulmonary embolisms): blood clot in right arm, comprised blood-flow with arm elevation etc. I have been seeing both a hematologist and a vascular surgeon over the last year (and been on warfarin). Both doctors have concluded that rib-resection / removal is the only option for me. Based on research it appears to be same recommendation for most people in our situation. Staying on warfarin for the rest of your life, especially at such a young age is not optimal by any means. And, if for some reason you ever had to stop warfarin treatment, you are guaranteed more clotting and each additional clot creates further and potentially catastropic damage. While I do not have my surgery date yet, I have been booked for my pre-surgery assessment on June 26. Not looking forward to the recovery, but am kind of glad to finally get some closure given it has been over a year now. I would strongly suggest you visit a vascular surgeon who is well versed and specializes in this condition.

Hi all,

No Surgery for me at the moment.

After meeting w/ my hematologist today, and this is the gist of what happened:

Doc is too uncertain about potential risks and long term side effects of bilateral rib resection (I'd have to get both removed). Does not like this option at all. He says that the possibility of something going wrong is quite high and will take my body a long time to recover - longer than a healthy patient because of my weaker lungs, heart, blood flow caused by the clots.

Right side of my heart in still enlarged, and clots in my lungs and arm have not gone away like they were suposed to. Which makes him think that there is another underlying factor that could be causing my trouble- not just obstruction between 1st rib & clavicle.

Going to get lots of tests done in the next week. Factor 5 and other potential genetic blood diseases, Echo heart test, VQ lung scan, & some more ultra sounds.


So staying of Warfarin for the next 12 months at least. Could potentially go off it and see how I go, and then if I got another clot, we would revisit surgery route.

Bit of a confusing day. I had fully prepared myself to move forward with surgery option and now we're back to more tests and more uncertainty.

Thats it for now

I'll try and keep you all posted as I find out more info.

- Jenn

Best of luck with all the testing, it's a tedious process but sounds like it is needed for your case. Other factors have to be checked out.

Thanks for keeping us up to date jlrob6. With the extra information you've provided, I can see there is a bit of a road ahead for you. Be mindful that your CT results need clarifying as they are taken at rest. To clarify the CT result, I would recommend you ask for some Venography and a Doppler ultrasound, the later identifies the type of blockage on the vein, I expect you are referring to the subclavian.

Let us know how you go.

Hi Jenn

I have only just seen your post. I am in Melbourne as well. haematologist's here tend to fob you off here unless you have cancer. Thats what mine did with me. I am on thinners for life after 2 clots. I am on my 2nd Vascular specialist after the first one was a big fail. I am looking at surgery also but still doing the TOS shuffle between my Neurosurgeon and Vascular. How have things been for you and have you had any success with dr's?

Hi All,
Well it's been about a year since I last posted on here and just stumbled upon it, as I am now researching rib resections.

After a year of tests, delays, 2nd, 3rd, 4th opinions, my specialists have all concluded the same thing you had 12 months ago! I need a bilateral first rib resection.

I am meeting with a vascular surgeon in the next coming weeks to discuss my path towards surgery.

It has been a frustrating and long year, with many specialists never seeing a case like mine before and not having the slightest idea how to tackle the problem.

I'll keep you all updated as I finally move forward to recovery!

-jlrob6

Thanks for coming back with an update and best of luck to you!

Hi Jenn

I am now on more referrals than I care to go to nor can afford in Melbourne. My previous Vascular's and Neuro are not advisable and I dont think they have TOS experience. Its very hard to find an actual specialist here. I am looking at The Alfred Hospital being the best place to have the surgery with a better vascular unit than all other hospitals in my 3 year search in Melbourne.

Here is who I have found which is an option if you have private insurance. This Dr actually has TOS experience and is also linked to a Neuro who looks great also

http://www.arteryandvein.com.au/thor...t_syndrome_tos

http://www.gregmalham.com.au/

If you want to go public get your GP to refer through The Alfred's Vascular Clinic http://www.alfredhealth.org.au/Asset...l_Vascular.pdf

My last Neuro and Vascular after 12 months have just been found to have missed c ribs and nerve issues on my brachial plexus they said were on the left but the MRI results say the right side. MR Terry Devine is Useless and getting long in the tooth and close to retirement. I dont think he really understands TOS. Dr Adrian Ling who was my 2nd Vascular is not experiences either so I would try the links above for the best option. We dont have an actual specialist unit in a major hospital like there is in the US so it takes a lot of research and Dr shuffles to find the right one. Feel free to PM me anytime.