Hi

I have just been diagnosed with Arterial TOS which is also affecting my nerves. I have suffered with this for years, and only by accident have the Drs suddenly given me this daignosis after many tests. I live rurally and have been rushed into a semi local vascualr surgeon who has inturn booked me in to see Professor Harris at RPA in Sydney as he is apparently the best at the surgery for this.

My question is - who else on here has seen this Dr and is surgery the general rule of thumb for someone with complete arterial occlusion with their arm raised above 90 degrees? My hand already has nerve damage and weakend grip all the time now... and most mornings i am waking with a swollen, cold and numb hand.

Any info on how RPA generally works and time frames of waiting for surgery etc woudl be great,

Thank you

Kelly.

Hi, Kelly!

Yes, you must have the surgery but the good news is that your chances of success are much, much higher than if your case was purely neurogenic. I had a rib resection in Denver a few years back, results were "iffy" but to my knowledge my problem is primarily neuro, with some veins trying to get in on the act... no arterial involvement.

Best of luck to you; you might want to search the forum for other arterial cases or just the great surgical threads you can find on here for more info about recovery and recoupment.

Alison

edit it and choose delete

Hi Kelly

Sorry I have just seen your post. Its Tracie here from the TOS group on facebook. My guess is things will move a little quicker for you now If I was in NSW I would have had my surgery there with Prof Harris

For those who are interested Kelly had surgery last week and is doing well. She is now home and improving every day.

Just wanted to say hello nd let any fellow Aussies know that professor harris at rpa is fantastic! After reading a lot of others stories out there within a mo th of seeing him I had had a cat scan , nerve conduction studies and surgery for first rib resection done and dusted. He could clearly see on cat scan that my artery complete shut off on arm elevation and this was shown again when he operated as be said be could see a lot of compression in there.

I am going well, sore and stiff and sneezing and coughing are like releasing an internal ninja but other than that going well

Good to hear, hoping for a continuing good recovery.

Kelly, when are you having surgery? Mine is arterial as well. Hand is numb now as I hunt and peck with other one. Please share your experiences. I elected to wait until Sept to have surgery so I can finish some stuff first.

Elizabeth

Hi elizabeth,

I am totally amazed at the dramatic improvement in my arm! I am can't believe I lived like that for soooooo many yrs. my left arm needs to be done as well eventually (only 40% occluded compared to 100% of right) but the difference in raising my arms now is just incredible. My sternum is killing me where they took therein and are back tomdrs tomorrow to serif I can get some stronger pan relief but I think thesis more because I am a mother of four and simply doing too much... Today's went and did my normal market stall with my husband doing the lifting and set up and me jut standing and selling buti Amin agony tonight, tears and almost off to hospital for better pain meds but again simply from over doing it... Take it easy and the relief out ways the pain pretty quickly!