I always applaud when I see TOSers posting who are learning all they can about their condition, finding ways to adapt to it and learning what works best for THEIR body. That's the way we take charge, instead of being at the mercy of the Beast, and as Dr Togut told me long ago, it's necessary because there is no one else - Drs, friends, family - who will know or care as much about this condition as you do- far from it! So hurrah to those who have done their homework!

However, an understanding of YOUR situation does NOT lend itself to some, most or all other TOSers' situations, and this MUST be realized. Without walking, literally, in another's shoes, you CANNOT know their story, and you should NEVER make ASSUMPTIONS about another person or groups of people.
Having been here and on the OBT board previously for well over four years now, I feel like I can speak from some experience about the usual Toser who posts here. They tend to be someone who has been either misdiagnosed or undiagnosed for several years, may have had surgeries to correct the (wrong) problem, and have tried many approaches for pain relief, including PT, which has usually made them much worse. They have seen between 3-6 Drs, and been told they are lazy, head cases, wimps or or after money, none of which is true.

I really think those "mild to moderate cases" of TOS that are going to resolve with PT rarely make it as far as this board. Why would they? They either get better with rest and PT long before they ever get a real TOS dx, or they get a dx quickly and the problem is resolved with timely treatment. It is those who are left hanging without timely dx or treatment for months or years, or rx'd the WRONG treatment, by Drs with little or no understanding of TOS, who get worse and worse that find their way here. WC folks. Also traumatic TOSers. Vascular Tosers. Some athletes, the weekend warrior types. Sure, not all of the people who come here have severe TOS, but a great many do. And of those who don't, some get their questions answered, leave, and are never heard from again, I'm hopeful that means they are better.

My point is, TOS is a syndrome, a collection of a variety of symptoms with multiple causes that end in a similar result, pain, weakness, tingling, numbness, etc in the area of the traps, shoulder, armpit, upper chest and throughout the arm and hand, although even the locations vary from person to person. We can agree it is compression nerves or vessels within the thracic outlet, but each person's TOS is different and individual. As well, many TOSers have other accompanying conditions such as fibromyalgia, RSD/CRPS, migraines, spinal problems, thyroid issues, diabetes, etc, etc. People also have very different immune levels and overall physical fitness. A male in his 20's with good abdominal and mid/upper back strength may have a pretty fair chance for recovery, while a forty-something woman with poor abs from repeated births may have less.

Then there is the question of pain. Pain is subjective. I cannot know yours; you cannot know mine, nor anyone else's. Neither can any Dr. They have to go by the patient's word, and what their behavior is saying. The relationship between the Dr and patient is key. My Dr knows my condition, and how to treat it, because he has seen it it develop over TIME. He knows what a good day is for me, and a bad day. He knows what I can and can't do. The same is true, or should be, for all those posting here. Therefore I find it HIGHLY inappropriate for anyone to infer that too many TOSers use pain meds. That IS a judgement statement, like it or not.

Chronic pain is not acute pain - it serves no useful purpose. It affects sleep, mood, memory and many other important functions. Chronic pain steals our joy in life - it is the cause of job loss, relationship problems, financial hardship, legal issues, vanished friendships and an end to favorite hobbies and activities. When all avenues have been explored in hopes of getting better, or as an aide to allow the body better rest and possible healing, pain medications are both appropriate and a Godsend.

I believe most here have tried everything possible to get better. No one WANTS the life of a TOSer. Anyone who sticks around awhile and reads the stories posted here will know that the TOSers here are a very brave, committed, answer-seeking people not content to sit at home on their sofas eating bon bons with their Oxycontin. We mourn the things we've lost. We resent the lack of knowledge and especially the air of disbelief about this condition. We learn from each other, share ideas, and seek out new research. We pool our Drs' info and helpful links so others can find them easily. We meet together in CA and PA, and support each other through surgery and related and unrelated good and bad times in our lives. We are not, by nature, passive personalities, thus the need to learn to relax.

Dr Ellis' page on causation is simply one of the best I've seen at explaining the ongoing pain - Dr Annest said something similar about "scarring" inside the nerve being a problem. It has bothered me for a very long time that there is obviously on-going inflammation, yet it doesn't respond to standard anti-inflammatories. As long as the inflammatory process continues, the pain cycle isn't going to be broken, regardless of what therapy or treatment procedure is tried, IMO.

http://www.doctorellis.com/causes.html


Thanks for reading. Not looking to start anything, but felt the need to point out what I felt were errors and omissions. If you feel like flaming though, flame on - I've gotten MUCH tougher!!

beth