Surgery, meds, I agree ARE apart of treatment/relief options. Never said they weren't or shouldn't be. Never even implied that.

IMHO they should be the LAST resort. Only used when all other honest efforts have failed. That's the key, honest effort.

At the risk of repetition I will give my bicep curl example....

During the years leading up to my dx, I noticed that I could do a bicep curl but that I had problems later. I didn't make the connection that that was the culprit or part of the culprit. I didn't know my anatomy etc. I didn't understand the interconnections. I wasn't always in pain as a result of doing a bicep curl either so there was no consistency.

I got my dx. I started to learn, on my own, about my anatomy so that I could understand my dx and what it entailed and what I might be able to do to help myself and the professionals treating me.

One of the things I learned was that the bicep has two tendons. One is attached to the humerus (the arm bone top) and the other to the front protrusion of the scapula...the front protrusion is called the coracoid process. Beneath the coracoid process passes the Brachial Plexus as it starts to branch out in the arm and form 3 branches that go to your fingers. When contracting the bicep (bending your fore arm up) the bicep tendon will PULL down on the arm bone and the coracoid process. This pulling down will reduce the space underneath for the BP to pass. This then increases the likelihood of nerve impingement/entrapment/injury/damage etc. The pain is usually not immediate. In fact, in my case it was never immediate but usually about 3-12 hours later. It took that long for the nerve to get ****** off yell at the surrounding muscles they in turn get inflamed and that's when the pain signals started.

Now with the above said, I wasn't happy to hear that "you can't do bicep curls." No one really said that but they did explain that unfortunately for me IF I wanted to continue doing bicep curls I had to INSURE proper form throughout. That meant NOT letting my shoulders roll/round forward. Let the bicep tendon pull all it wants but don't let the space be reduced by keeping my shoulders back. I guess it's a visual thing. Ah...so what helps me is I do bicep curls with my back against a wall or lying down...this helps to remind me to KEEP my shoulders against the wall throughout the range of movement. When I do this and don't slack...I can do bicep curls and have no issues later. Hurrah. Now this information applied to OTHER day to day activities because the bicep is used in day to day life, not just at the gym with the simple bicep curl. I need to lift things from time to time...carry a box of some weight. This involves the bicep...same principal....I noticed that when I carried a heavy box for some distance...say 50 yards...pain later. Ah...but what happens if I watch my posture and carry that same box keeping my shoulders back throughout...no resulting pain. Ah...I'm on to something. Try to maintain that while walking...bending over...tying shoes...bending over a sink to brush teeth, etc.,etc...after awhile the muscles get the message and strengthen (well I helped them get stronger with weight training designed specifically for the back muscles to..my arsenal of helpful modalities) to HOLD the shoulders back. When my PT explained in the beginning that with time this would become a relaxed and neutral position I thought "impossible" it felt so difficult in the beginning to maintain...it was a strain...big effort and I had to KEEP that??? Unreasonable...what were they thinking...but with time and patience and perseverence...yup...they were right...they are further back naturally and I still have some ways to go but it is more like when I relax after being fatigued they do not roll or round forward as much as they once did and I am not having as many flare ups. Hence my screams that please people CHECK your posture, check the exercises, have patience...it is tough...it is a lot of work...but it can work. And if you all have been there done that and it doesn't and you have no choice but to resort to meds and surgry...I support you. Again...honest effort.

hi,
muscle overuse....drive too long.....equals muscle inflammation or use of accessory muscles not normally used due to the overuse.....inflammation leads to compression of nerves and vessels which causes tos symptoms!!!!!!!!!!!!!!!!!

tos could be transiant or intermittant or come back if the same conditions come back to cause the pain.

Sorry to see you return.....I too was pain free for only six months post op but can relate to the pain free then back to hell.....the tos symptoms may well be due to the drive.......hope you get the help you need and WELCOME to our little oasis (again)

love and hugs,
Victoria

Thanks Victoria,

Dr. Togut said it was from the lenghty drive. The trap muscle has become aggravated. NO exercise and change of posture and movements, etc. Should get me back on the right track. I am not nearly as bad as before surgery. That was impossible. Not able to live a normal day-to-day life. I believe I am very lucky and hope to continue on that path. Linda

For whatever it is worth...

One of my many pains or problem areas was my upper trap. I got these "jolts" zzzz and the muscle would spasm etc. Usually it was just tight like crazy if it wasn't jolting or spasming. And it appeared that no particular movement, position or activity created this. I chalked it up to the general "TOS" stuff and merely did what my doctor and PT suggested ...i.e. improve the posture. As I stated in other posts, I learned my anatomy etc...and ONE of the many things I found was that driving for more than 20 minute too was a problem. I couldn't figure out why. I thought well sitting too long etc. Come to figure out...bucket seats! why? Look at how they hug your upper body INTO a rounded shoulder position! BAD! Very bad. My remedy was not an instant cure but it helped. I made a foam cushion about 3 feet long and about 5"-6" in diameter..round. It goes lengthwise against my spine when I drive. It helped to keep my shoulders straight or back while driving. Eventually I was able to get 30 minutes away from my house without a flare up. Now with all the exercises, I'm able to do so without the pillow (but I admit driving without that pillow is slacking..I'm asking for problems). Good luck. Again, this worked for ME...it is offered to the extent that it may help you.

I think TOS is like the age old chicken and the egg joke...which came first, the muscle or the nerve irritation.

Muscles can be overworked and that can cause inflammation and inflammation leads to swelling and reduces the space for nerves and the like to pass and voila...irritation of the nerve and the circular cycle of irritation and muscle pain.

That said, movement, position, posture can cause the compression (e.g. rounded shoulder posture, head forward position) which leads to irritation of the nerve which then causes muscle tightness, overcompensation and another or same cycle of irritation and pain.

I can get into trouble by posture and I can get into trouble by exercise or activity. Either way...I must be careful. Either way knowledge about the anatomy does help ME, at least, do the activities without getting the irritation or compression. Not always successful, but getting there.

I thought that this thread was complete but I'd like to add a few comments of my own. Over the short time I've been part of this community, I've held my comments when I have felt others disrespectfully judge me or anyone else in this very helpful community. I would like to regain a sense of respect by and for each one of us in our ability to choose our own best course of action.

Personally I think it's a waste of time to focus attention on any generalized assumtion of "they" or "them". Why don't we agree to speak only for ouselves and not focus on or speak for any generalized multitude or even individuals who don't take what others believe would be the best course to manage their TOS and other health issues.

I think learning as much as I can about my mind and body and how I behave and how I can make alterions to my behaviors e.g. posture, ergonomics, attitude... in order to better my health issues is very valuable. But I believe that scientific information, like the understanding of my anatomy, is only one piece of the puzzle. For example, one of the best lessons I ever learned came from my Feldenkreis teacher, with whom I received both lessons and 1:1 Feldenkreis and osteoppathic treatments. After eons of seeing me get into trouble from too much effort and my desire to overcome my own condition, he finally stopped me in my tracks and told me that I could NEVER AGAIN afford to NOT pay attention to my body. No matter how much or how little I understood the names, locations and function of my own body parts, learning that lesson has been more helpful and has stayed with me longer than anything else. And I do have a keen interest in facts. I have previously studied anatomy and I spent years studying the human form from the perspective of the arts. I have spent time looking at the Body Worlds exhibit and have even consulted with MDs at the exhibit(www.bodyworlds.com) but nothing has helped me more than paying attention to my own body. For me this is necessary if I am to live in the world with my TOS and other unique body issues.

Regarding the use of meds, surgery and other fixes, be they quick or require lengthy attention and education, I look at the situation again from my own perspective and experience. Yes, I do generally believe in meds and surgery as a later course of treatment. But I have learned to take an experimental approach for myself. I find that I need to create a RECIPE that works for me, for right now in my life. For example, if I were to try only accpuncture and if it doesn't work, it may work better when I COMBINE it with something else like heat or ice or TENS. And the recipe that works for me today needs to evolve to accomodate my changing body. What worked or didn't work in the past, like certain kind of PT, may or may not work as part of my recipe today or next year. For example, for previous cervical neck pain, I had more than one PT request that I take anti-inflamatories prior to PT and that as a result of experimention I learned that this was a good combination.

I try to evaluate my specific unique body issues at the present time and I use an experimental approach to determine the right recipe that works for me for now, knowing that this is a changing and evolving recipe. I take responsibility for my body and for finding the right recipe for me, for now.

Knowing that my body and my case is unique and complex, I work to be informed by medical practitioners, by facts and input learned from this group, my own education, my attention to my body and my intuition. I take an experimental approch to manage my body issues in attempt to resolve and heal pains and discomfort. And I remain open to the possibility that I could even be cured and pain-free.

That said, I believe that we are each the best manager of our own unique cases and that none of us have the knowledge or the right to judge others.

[B]Fern, Your reply was so right on. We all have different forms of TOS but to be acknowledged would be nice. Everyone has different symptoms and degrees of this horrible disease. I was so lucky to have had the amount of time I did actually "pain free". I am doing what the doc's tell me so that I pray "it" will go away. Thanks LInda

hiya linjane:

Can you tell me a little bit about what your diet and exercise were over the past six years? I am currently solving my own RSI stuff and am considering options. From a neutral point of view I would like to know if maybe some bad habits or lack of exercise/ergonomics may have contributed to your relapse? What's your take on it all?

Good post, Fern. You made some very good points. You're right- we're all different which means different things will work for us and I don't think that anybody should be telling someone else what they NEED to do. I remember once on obt that someone told me that if I didn't listen to her and do what she suggested that I deserved whatever happened to me. Well, I already have a mother and don't need another one. I'm lucky that I'm not as bad off as many here, so I'm able to do more. But, while my TOS symptoms aren't as bad as others are, I have severe pain from cervical dystonia. But I've learned what I have to do in order to be able to deal with it and function. It doesn't always completely help but for now, it's the best I can do. At this point, I don't need TOS surgery and hope I never do and would think long and hard before I did it. But, I can also say that when someone is in terrible pain, they'll do almost anything. I've been to too many drs. to count as far as the neck pain and surgery won't help there but I guarantee you that on those days that I'm in such bad pain from it, if they told me that they could do surgery and that they guaranteed it would stop the pain, I would pack my bags and be waiting on the hosp. steps that same day. I've also dealt with alot of comments about the 4 surgeries I've had on my foot- like "why are you doing this?",or "It probably won't help," or even "you're crazy to do this again," etc. Well, what am I supposed to do if I can hardly walk and can't wear shoes because it hurts too bad?! They won't let me in a grocery store or restaurant without shoes on....So, you always hope that this time might be the time that'll put a stop to the pain. I had to learn anatomy too and that does help considerably when you have a problem like this and I'm sure it's helped the nurses on here too- doesn't make us suffer any less or give us any help in putting a stop to this though. Also, the meds we're on might help us but not help anybody else. It's just trial and error sometimes. Same thing with PT- helps some of us but nearly killed me. We all just do the best we can. And all I ask is that people remember that we can't all be an authority on everything and that sometimes other people might have something to contribute that sounds pretty simple but might really help alot of others.

When a new person comes along with questions, members both at OBT and here have always tried to help and inform. I remember a newcomer whose TOS sx were getting progressively worse, while she continued such activities as four-wheeling and lifting heavy bags of seed or fertilizer, while at the same time seeking advice on how to relieve pain and avoid needing surgery. I was in a horrible place, severe pain, mourning the loss of my teaching career, and reached out with the best of intentions to urge her to be careful and not push things too far because I didn't want to see anyone else go through what I was going through.

I didn't mean to offend you; I didn't mean to act like your mother, and I never said you deserve whatever you get if you won't listen. My words were "I truly hope you don't live to regret ignoring my advice", or something to that effect. And I meant them. There IS a difference in intent; I was concerned,maybe more than I should have been, but I'm really sorry that upset you.


This is NOT OBT; it's a much NICER place, no silly game-playing or Jr High nonsense. I think we all can agree we like it better here, and the past is better left in the past. Let's all "judge not, lest ye be judged."

beth