TOS return
 

Thanks for everyones input. I am going back to Dr. Togut next week. I had started therapy last week but found myself in more pain. I canceled todays session but my doctor said to keep at it. I am very lucky to have had so many years of no pain. I can understand why people do not come back on the site. You are so happy to feel better and feel guilty at the same time. In the past I have met a great bunch of people on the site who offer great support. This is a very difficult condition with not alot of help or informed people. It is hard to live a normal daily live and not let it interfere. Thanks, Linda

Linda, I am not a Dr, Nurse or PT... however in my personal opinion the no pain, no gain attitude could be causing your body irreparable harm. God knows you do not want to end up in the same position as you were in and maybe since it is only a week till you see Dr T, that you could possibly hold off your sessions till than. Like I said this is only my opinion as to what I would do and as of late I have been trying to obey what my body has been telling me to do ! Wish I could say something that would and could help you, though sure you have been through the ups~N~downs of this before I ever even knew what the letters TOS stood for.

Mark~n~Goober

I have a few questions for noname....Exactly how many years have you had TOS? Also if you have had any surgeries for TOS or RSIs? I am somewhat offended and have become defensive myself by some of your comments regarding how TOS patients don't try PT and elect to pop pain meds rather than work to not fix-but improve their symptoms. There are exceptions to every generalization and assumption.
I went through a year of PT before finally agreeing to surgery. I have bilateral neurogenic and vascular arterial TOS. The first rib was removed in April of 06 , left side, and the pain level has decreased considerably and by the way-my surgery was OUTPATIENT, not to mention the prior surgeries for bilateral CTS, radial nerve release, tennis elbow release, and bilateral cubital tunnel releases, followed by a cast from my armpit to my fingertip-straight out-not bent- for 2 weeks following surgery. So of course you can believe that I'm pretty familiar with pain and the management thereof. I can now function without a lot of pain meds but I also can't do anything! Some of the best TOS surgeons in the country will tell you that you are NOT cured of TOS by removing the rib. Symptoms are vastly improved. That is of course, as I'm sure you know, subjective to each and every individual and their course of treatment whether it be surgery, PT, and meds as needed or all of the above.
TOS takes your life as you know it away and one is forced to transition accordingly.

3.5 years. Diagnosed over year ago.
No surgeries.




Read any of my posts where I did NOT accuse any ONE person or group. You are assuming that I am accusing ALL TOSers. I am not and have not. Within any group of illnesses there will be some patients that are too quick to resort to medication and/or surgery. It's just a fact. You don't have to accept it. And it's not an accusation that YOU fall within that group. It's my opinion that the fact is true and I have heard this from many of the professionals who are helping me, doctors, massage therapist, chiropractors etc. They SEE it...again, I'm not saying all their patients are this way...I'm saying they believe a percentage of their patient population is this way. I agree. For instance my chirpractor complains that he has many patients who will do exercises etc., that he gives them that he KNOWS for a fact would help them...they do it for a little while and then stop...come back..."it doesn't work" he can tell they haven't done the exercises or enough...they come in "fix me." Give me a pill...I can't take the pain. He then tells them they have a choice do the exercises or go to a physician who can prescribe pain meds. I saw my PT today. She said that it is unfortunate but yes, some just will not listen. They "claim" they want relief and she believes that if they would follow her instructions they'd get it. But they don't. Then they leave come back a year later are worse off and still trying to expect miracles. Not all. Read...NOT ALL. Some. If you are assuming my TOS is just not as bad as yours...that's a judgment. I'm not offended...but I've worked very hard to correct my abnormalities. I'm making progress. The professionals in my repetoire see that. Yes, it may be that I'm lucky and this stuff can correct it. I recognize that too. Again, I said NOT ALL. I did say that some have no choice but to resort to pain meds and surgery and I have NO NEGATIVE JUDGMENT ABOUT THOSE TOSERS. I just want to post that people need to check their brains to insure that they are NOT being...okay I will say it...lazy. Sue me. The exercises require WORK. They are hard. They are frustrating. Some cause pain. Sometimes it is hard to tell is this good pain or bad pain. It is a lot of trial and error. It also requires a HUGE amount of patience. At least the above applied to me. Often I wanted to give up and conclude it is NOT working. When I have a flare up and it is bad I'm back to thinking this is NOT working I must have some irreparable damage. No, I'm being lazy (that's my judgment on myself). I have to pick myself up and get to the exercises and posture and treatment modalities that I KNOW have worked and will continue to work FOR ME.


And I assume you fell in the group of patients/tosers that did everything you could to avoid surgery and couldn't. I didn't have a negative judgment on that. It's sad that you had to resort to that but if it was necessary you need to do that.

One more comment...

I suppose I could be offended at those out there who are "assuming" that my TOS is just not as bad as their's if I am progressively getting better without drugs or surgery. I'm not. It is an assumption others make and that's THEIR problem/issue. Yes, it's possible that mine is not as bad. It's possible mine is worse. It's possible that mine is equally bad. I'm not into comparisons as that doesn't TREAT my condition or yours. How long I've had it, how long I've done PT etc., is about comparisons. It isn't about treatment.

No one ever said I needed a rib removed or a scalenectomy or other surgery...they did say that if I didn't work with a PT etc., I might end up that way. "Might" For all I know, I may still require surgery one day...I hope not. I hope that the progress is a sign that I will never require surgery. I'd like to avoid that.

noname- I'd like to add my two cents.

1. Your comments about pain medicine are presented as if it is a choice of Pain meds OR work hard. I am sure you don't mean it that way, it's just the way it sounds. Of course people who do take Pain meds are going to be offended if you imply that by taking them they have given up.

2. It is great that you are able to get by without meds. We are all happy to hear about your successees. But - when you talk about "people who do [X]" you, your chiropractor, and your PT are judging those people. I had a chiropractor (who was excellent and came highly recommended to me) who gave me a list of exercises and every time i saw him he'd make a big deal about asking if I had done them and was always dissapointed that I hadn't. Of course he never could take the time to understand or remember (despite my attempts to explain) that my TOS injury made me incapable of most of the exercises he suggested since they were generalized for everyone. Same goes for 2 out of three PT's I personally have seen for TOS (and one of those two was a TOS specialist). They just have a set of expectations that is unreasonable, then are dissapointed when the expectations aren't met. In a nutshell, I have found that very few practitioners actually understand how I feel and can relate to the trouble i have getting through the day. I can see how any one of them might make a comment about me not being dedicated enough or resorting too much to medication and be totally incorrect.

If I have learned ANYTHING from having this ridiculous condition...it is that many people are not in fact what they seem, and that MANY who look and act normal are hiding troubles, problems and who knows what else behind that happy, normal looking facade.

So PLEASE share your successes with us. Everyone wants to hear about something that works. It is fantastic that you have found ways to make imporvements in your condition. I hope that you are able to continue and are able to avoid surgery.

I would ask that you consider as another has mentioned, that NONE of us who are in this position really want to be here, as I am sure you do not, either. The people who come to this forum to learn are not the short cut takers- we are here trying to learn as much as we can to hopefully affect improvements in our own condition. I know it to be true for those that I have met here in CA, and I can see that it is true for others by listening to the things that they say.

Not only are people here to learn what they can, they should be here to offer any ideas that have helped. Each TOS'r is different. My surgery worked successfully for 6 years. I now have to relearn the limitations and changes that I had made years ago which helped my recovery. I became so used to being pain free, I went back to old ways. My fault. But Dr. Togut told me DO NOT do PT. I tried and was worse. I will listen to the advice of my doc and change my habits.

1. Implication implied, but not given. It should have been clear that I touted work before pain meds and/or surgery. Clearly stated too that if that TRULY did not work, help and one had no other recourse, of course to resort to meds and/or surgery. Yes, sometimes meds during the work but by that to try to avoid the meds because pain is a teacher, it is a communicator....yes there comes a point when sorry...need relief to hear the message but I still truly believe more relief can be obtained through the work. There is no shame in having meds and/or surgery IF a person truly has tried everything else and cannot get relief. Yes, it is needed in many instances. And at the same time yes, people abuse that. Two different groups of people though. Clear?

Yes, they are judging them. They are judging those patients THEY have that are truly not doing the work that would help them. Is there a class of patients that are not doing the work because, as in your case, they can't or it would aggravate the condition and the doctor, PT or ? doesn't realize that, yes...I'm sure there are many instances but my point wasn't about that...my point was that there are people who go running to the doctor complaining and refuse to do the work. They claim they do it, but they don't. If you know your body well enough that a exercise given to you by a PT, doctor etc.. will do you harm...by all means refuse to do it. As I also said YOU know your body better than any doctor, PT etc...they can only assist based on what YOU tell them etc. They do NOT have all the answers. Good ones are better than bad ones. It is a team effort between the patient and the professional. That said, I have had the ocassion when I thought a particular exercise was NOT good for me, would aggravate a condition (not TOS in this particular case) was against ALL accepted medical remedies and when all else failed including my own self care remedies which were not working, I sucked it up and tried one given to me by a professional (a physical trainer in this case..young guy...what do young people know ;))...and surprise surprise...it worked! So there are plenty of instances, including my own personal where I think I know best and well I don't. That's why I recommended a hard examination of whether one is truly doing what they can or whether perhaps they are giving up too soon because "it's just too hard." I can analogize the situation with my Personal Trainer. He kicks my butt. Often my remark is "are you nuts" (that I can do X)...it's difficult, it's hard...but with effort etc...I am able to achieve it. Not maybe the first time and not without some discomfort. And some of the exercises impact on my TOS. He is aware of my TOS and he doesn't have any expertise with it...but he is very aware of the impact of posture and between the two of us we have worked out what I can and cannot do. Sometimes it is a battle of "no, I'm not doing that as it will hurt me" and if I let go and trust him, it doesn't...surprise, surprise...a few times...oops...he made a mistake (it is a learning process for us both because TOS is very weird sometimes...at least mine is and it can not always be predicted what X might do to the TOS if anything).


there are good professionals and not so good ones. As I said, it is a TEAM effort between professional and patient. I too had a very good chiropractor who misdiagnosed my situation. He was close as was the orthopedist and the massage therapist I had at that time. But we've all been misdiagosed for awhile. He gave me exercises and the ones that did not help I stopped...and I explained why. He did feel that they would help but understood that if they were hurting or aggravating that something else was awry and ultimately agreed "don't do anything that aggravates a condition." Any professional that doesn't come to that conclusion isn't very good in my book. Again...all I advocated and recommended was a good honest self assessment. Was it truly something you could not do? Or was it something you "thought" you could not do" Or something you "thought" would aggravate your condition? Generally you'd probably be right as you sound like someone very in touch with your body. I know I feel very in touch with my own but even I've been fooled. Just saying. It is each an individual assessment that only the patient can "judge" whether or not they are being honest with themselves. I'm not "judging" I can't because I'm not IN their bodies. It's not easy to hear when a professional tells you that you can and you feel that you can't and truth be told you can and could. (again, not always but perhaps more often than we'd like to admit to).

I've always felt there are exceptions to every rule. One cannot say "all" or "every" because sooner or later there is an exception. You don't really know the intent/purpose of everyone who posts here. You do "assume" that they truly want an end to their condition but I can only equally "assume" that there are at least a few that come for the attention and pity. Sorry to be that blunt. It's a great forum for help to those that seek it for that purpose and I truly support that effort. I found it because like many here I wanted help and to see what others were doing and what others have learned. I found that. I'm willing to share my experiences and efforts too. Part of that BEGINS with the honest self assessment. And one has to continuously reassess.

Okay...end of this. I think I'm only repeating myself.

One more comment...

I'd admit to being very lucky. When I found my neurologist (surprise, surprise, it's neurological???) he was very, very well versed in TOS. He referred me to his A+ PT and she is phenomenal. I had to wait a month to get another appointment with her and finally got to see her again yesterday. We are tweaking my TOS. The team effort. My original prescription when dx'd was 8 weeks 3 times a week, because of my body awareness and some of the exercises I was already incorporating in my self care and selection of...this works, this doesn't....she discharged me after 4 weeks...trusting that she had armed me with the specifics of TOS...and that I already had some arsenal to combat it...and that possibly with time and patience I'd beat it. I went back after 7 months so that she could help me reassess my situation...I went once a month for 3 months and then haven't seen her for 3 months. I want a bit more guidance on some new things I've found (kind of like narrowing down things to a few culprits) knowing that perhaps eventually I can be 100% pain free. She is optimistic but knows that I have my limits and that perhaps there will continue to be things she would not recommend I do but trusts that I'm knowledgeable enough to know what will damage the nerves if I push too much and that if I push I may be able to do so without damage and she trusts I know the difference.

noname- here's the thing.

Medicine, surgery, PT, bodywork, home exercise, and sometimes psychological support are ALL important parts of a TOS'ers treatment.

None of them are mutually exclusive, and anyone who is being treated should evaluate what things they need and what they don't. (for example- keeping "surgery" in your treatment arsenal may only mean realizing that it is an option and making your own informed decision about whether you need it)

Meds and surgery are perfectly appropriate and reasonable even if you have not done "every possible thing" to avoid them. As long as you have made a reasonable attempt to understand where they fit in your situation.