| Last Updated August 28, 2005 |
My TOS :
Well, after 10 years of seeing doctors, physical therapists, alternative healers, and several, several evenings of tears and pain, i have recently been diagnosed with TOS --- and for once, i believe the diagnosis. It has been painful to actually allow myself to reopen the emotional trauma and attempt to get a diagnosis and undergo treatment. i am now seeing 3 different physical therapists 2x/week, along with a mental health counselor for depression as well as an osteopath. i'm still in the middle of all of it, but I wish i found this site ten years ago. some of you have gone through the exact same mental thoughts growing up as a teenager. I'm now in my early 20's, graduated college and am working full time in a competitive job. it's taken me a lot to get here, but i do realize it's time to put my health first. writing this is painful (ha i'm sure you figured that one out) but i just wanted to post my story. i'll be updating this soon. in the meantime, for all you young folks out there, feeling lonely, alone, confused, "abnormal" from your friends, just remember... you'll get through it, and you'll be a stronger person for it. you'll have the ability to tell true friends from fake ones, and in the end that matters much more than being popular, going to all the parties, etc. finding yourself is the most important, and it takes time. god knows i'm still doing that. even some people i know in their 40's and 50's (with or without TOS) are stll finding themselves. be nice to your body, and try and be patient. i know i'm trying to, and i'm probably one of the most impatient people... especially when it comes to physical therapy. over 10 years, i've continuously dropped it and brought it back up. until i post further details, please feel free to contact me if you want to talk about something specific. reading stories, i am saddened by our grief and pain, but there is comfort knowing that we are not alone... take advantage of the virtual family on this website. it's amazing to feel like someone finally understands.
Well, after seeing a specialist, it turns out that TOS might be a false positive diagnosis. Surgery is the last option, and is really a "leap of faith" that one takes after trying everything else. The surgery is pretty complicated and not a guaranteed cure, even if I did the surgery it normally takes one year to get back to fully functional physical condition with minimal ability to do sports, etc. So... i'm thinking that's not an option. I've started doing treatments in isolation, and taking a leave off work to see if the down time helps my body heal. I think i've taken every test in the book - MRI, XRay, Ultrasound, and recently EMG/NCV nerve conduction tests. Only the ultrasound came out with some abnormality indicating TOS, but the reason they say it cannot be a 100% diagnosis is because some people naturally have a compressed thoracic outlet, but do not exhibit symptoms. Something else in conjunction with the small outlet can be the cause... so the doctors are going to try a "process of elimination" to see if they can isolate what's happening. I recently had problems with my wrists, making it difficult to type. Over the past 10 years i haven't had problems until i started doing treatments and therapies. Perhaps it's aggravation, perhaps it's something else. i've been doing carpel tunnel tests since that might disguise itself or conflict with TOS. but, so far none of my tests indicate carpel tunnel. Most likely it is a chain reaction from the other TOS symptoms or other conditions. Anyways, some of my own personal advice (in no means am i qualified to give medical advice) - don't jump to surgery unless you get a second opinion, and understand that surgery may not be a cure unless you have conclusive evidence (for example you have an extra rib and that is definitely the obstruction).
Dr. Bob Adams, Redmond, WA - osteopath Dr. Brian Ferris, Bellevue, WA - vascular surgeon; coworkers with Dr. Daniel Pepper