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

ur "judgement statement" is well recieved on this end
tastefully and methodically written

I wish i could have said this as nice as you have. I have not been here long but i have certainly felt the judgement and have seen it with what i have read. To be honest i have been trying to fined a way to nicely say bye just because i feel that i do not fit in to the click. But at the same time i would hate to go because there have been a few who have been nice enough to answer some of my questions and reading others posts have helped as well. I think i well stick around a bit longer but just to read not to chat and see if others well read what you have said and change a little thank you once again for putting it out there and being able to do it nicely and to the point.

Mucker, I have enjoyed reading your posts and I believe there are people here with the right attitude with whom you can develop a good, supportive relationship. Everywhere you go, you will find pessimists and optimists, people who see the glass half full and half empty, people who are unhappy with themselves and project their unhappiness onto undeserving others. That is what makes life interesting, because everyone has their own opinion and we live in a world where it's okay to disagree with someone and voice your opinion. The key to remember is that we have a choice about whether we let someone's opinion bother us, or if we can let it go and move on. I don't think there are "clicks" on this site, I think some people have just known each other for a long time and developed close relationships. Others of us, like you and me, are newer, and we're still trying to figure things out. Just because we may not know the story of the woman this site is in memory of, or because we haven't posted on the old site, or we don't know about the personal lives of another poster, it doesn't mean that you can't gain something from this site, or offer something for someone else. I do hope you will continue to post, because I know I would love to hear from you and know how you are doing.

And to everyone else, please don't be offended by anything I've said here, I am only speaking in general terms. There is no finger pointing on my part, just a general observation of the intricate dynamics of this forum.

Beth...I agree with your statement wholeheartedly, and I send a big THANK YOU for your post. We all need to be proactive in our treatment and continually seek out knowledge. This forum is a wonderful place to share that knowledge, because even though we are all very unique in our conditions, there may be some small piece of what someone else is going through or a piece of information found that can be useful to another person. Yes, we all need to vent from time to time, but it's also good to share our thoughts in an environment that is positive and supportive. So far I have had a good experience here, and I send a big THANK YOU to everyone who has responded to my posts and questions.

Thank you Beth! I hope I haven't implied any 'judgements' in my posts. I think most everyone here is fighting this the best way we know how. This should be a place for learning about the SYNDROME... not a place to be judged. Dang, we get that enough out in the real world!

I do like to read all the posts, positive or otherwise and I'm confident enough to know when something applies to me and when it does not.


Anne

Hi guys,

I can't believe that Mucker you feel that there are cliques.....I am sad to see this....I know people know each other and have been chatting for a while, but I have posted in the past when I feel there is judgment, but I have not been on here as much as I'd like to. I hope and pray that you can see past this and know that ALL are welcome here and you will find there are some who post all the time, some a little others occasionally, so perhaps some are in flares or away and can't post.....however....DON'T GO is reiterated here as all input and anyone who needs help NEEDS to be here for help!!!!!!!!!!!!!!!!

take care all and be nice to each other!!!!!!
love and hugs,
Victoria

Thank you shellie. I agree that life is full of people who are pessimists and optimists. I am also a firm believer that every one is entield to there own opinion wether we agree with it or not. But what i have a problem with is people who jump to conclusions and start voicing there opinion with out knowing the whole story. I also don't under stand why one can ask a question and not get much help then another one ask the same question and there are all kinds of answers. And i don't think it fare for any of us to judge any one else on here we are here for one reasion and that is to help each other with dealing with tos and and the pain. If that is through sharing what works for one and some times just being there when someone needs to let off steam or a lest that is what i thought this sight was about. Once again this is my opinion and perhaps i should have kept it to my self i certainly don't mean to be rude or sound curule to anyone that is here on this sight. Like i said there have been realy nice people and very helpful info on here. But i think i well just read for now so wish you all well.

First to Beth, AMEN. I agree with you whole-heartedly.

Next to Mucker, I am fairly new and would hope you don't leave. I was on years ago, and am back due to a flare up. I hate to say I was happy to leave, but only because I was pain free. We need to find a way for the people who have a success stay on to support everyone else. Everyone has a different situation and a different reason for being here. Everyone needs a different course of action. Surgery, meds, PT. We should just be here to support everyones decision and offer what information we can. I am trying to cope with pain again after 6 years. I thought it was over. I was thrilled that I could skim my pool, play ball with my boys and carry my toddler without pain! I felt guilty that I could enjoy all these pleasures knowing it was rare. We all need to understand everyones unique situations. No one is the same.

Linda

I would really hate to see you leave this website. There are a few things I will let you know. I have been coming to this website for a long time. I don't get on here everyday...sometimes maybe once a week. I do alot of lurking because most times I feel as though I don't have enough experiences to be able to speak up and say something. We come from Atlantic Canada...we don't get the opportunities to see the same kinds of docs, and have the same tests these guys do. But let me tell you...if it weren't for these guys, I never would have been dx'ed. I always felt like no one was listening to me...(not here) but docs, family, friends or W/C. No one wanted to really find out what was wrong with me. Every step of the way these folks here shared their stories. Gave me advice that I didn't listen to and wish I had. I used to think I was nothing like most of them here, I didn't feel as bad as they did, or I didn't take the meds they did, but as time progesses and so does my TOS, I KNOW now what they were talking about. Yes, by times all of us can be judgemental, and we all have days we don't respond, but most of those days are because I can barely type or my body is so darn wiped out all I do it try to find more answers to my new questions so I just read their reponses to other questions. There is NO WHERE that you will find the support, advice and knowledge you will get here. no one will know your pain and what you go through daily besides the folks here. People just don't understand what we go through or that we say no to doing things because we physically can't do them, no one, but these guys here. If you have a question ask....people always bump up questions that don't get answered in hopes that someone will come along that can. Read Read Read. If you feel like posting, go ahead, if not, learn from their experiences. After 4 1/2 years of this, I am sure I would have lost my crazy mind without these guys. I have always appreciated their advice and support. Use them daily....

Rachael

1. I'm a bit defensive, so excuse what may be my defensiveness. I'm feeling that some of the above is addressed to certain comments I've made recently. To the extent they are not, ignore the below.
2. You are correct, that a comment that "too many resort to drugs before trying other alternatives" is judgmental. However, it is not addressed to anyONE particular person or group on this forum. Thus it is NOT accusatory to any ONE person or group here. As I have explained (and again this is my defensiveness) there ARE people, whether you want to accept it or not, who ARE prone to resorting to what may appear the quick fix, e.g. drugs and surgery. I'm not saying drugs and/or surgery do not have their place. Clearly they do in SOME instances. They may be the ONLY alternative, the ONLY remedy. To that extent they have my full support. What I said or meant is that each person suffering from whatever ailment really needs to assess HONESTLY their own situation to see if they truly need this alternativ before resorting to it. Sure no one wants pain, but the reality is that on an unconscious or subconscious or even sometimes on a conscious level there ARE people who derive a certain pleasure, if you will, in the attention given. It is sick, I know, but it DOES exist and any doctor who says that this is not true, should have his/her license taken away. Of all the doctors I have ever encountered there isn't one who has denied a portion of his/her patient population that was too quick to demand drugs and/or surgery.
3. If after an honest assessment you feel you have no other alternative than drugs and/or surgery...more power to you. I empathize and sympathize. I'm truly saddened that PT and other modalities did not work and support anyone who has truly tried these and cannot get any relief without drugs and/or surgery.

end rant.