Originally Posted by Kerryucialumni

Hello All,

I am reaching the end of my TOS treatment journey/experience! It took me over 2 years and 50 doctors to find a surgeon who was brave enough to actually admit that I was suffering from TOS after being turned away from over 50 doctors whom some even admitted that I may have TOS but that it is too difficult of a surgery so they didnt want to get involved....Others told me a variety of reasons why it wasnt TOS when I have x-rays and MRIs showing an elevated 1st rib that was compressing my nerves and arteries...

I tried physical therapy for over a year, botox injections, scalene blocks, stellate ganglion blocks to check for RSD (due to severe nerve issue symptoms) and anything else that each doctor I saw could think of! I travelled over 120 for a few months on a weekly basis, I was about to travel from California to Minnesota where they have one of the largest groups of surgeons who specialize in TOS and Brachial Plexus injuries merely for a consult hoping and praying that something would come of it. Just as I was beginning to make my travel arrangements (I had everything riding on this trip because after 2 yrs and double digit drs and innumerable tests at this point, I was just about broke using the remainder of my savings on the flight and hotel)-anyways, as I was getting ready to finalize my trip to Minnesota, my mom had found one doctor (a vascular surgeon) that I hadnt seen in the 120mile radius that I had been searching, she had found a doctor that ended up being the answer to my prayers!

I had the rib resection and scalenectomy and immediately my pain level was reduced by more than half and as I have been working with PT, my arm is getting stronger and my pain is going away! I am curious about the experiences and journeys other people had whether you have had surgery, or if physical therapy was the answer...I am interested in whatever you have gone through and what worked for you and what didnt. As well, how long you have had TOS, how long it has taken to get some relief, possibly complete relief., etc...

Hope everyone is feeling better lately! Take care!

Kerry