Back after 6 years
 

Unfortunately, after 6 years pain free, I have had my symptoms return. I had the rib-resection and scalenectomy in 2000. I have been off all meds since 2001 and 2 months ago I started with the pain in my neck, shoulder and right arm. I started PT this week and taking percocet again which I am not happy about. It took me a long time to get off all my other meds. It was not a pleasant experience. I am wondering if anyone else knows if this is common for this to happen. I believe the symptoms started after a very long car ride from NJ to FLA. We did it in 2 days but I did 99% of the driving and it was very stressful. On our return, slowly the symptoms came back. I have an appointment with my surgeon, Dr. Togut in 2 weeks. Just wanted some input. Thanks, LinJane

Lin Jane
 

I'd say ur surgery was a success.
I'd give ANYTHING to have had 6 years of pain free days
Most TOS patients I have read here have symptoms return ALMOST immeditely and continue pain meds and PT to this day.

Hi, and Welcome...
 

sorry we had to meet like this, though! i take it dr. t. was your surgeon 6 years ago? if so, awesome choice - i'm sure he did a great job; however, i'm thinking perhaps you only had a partial scalenectomy at that point.

unfortunately, it is NOT uncommon for TOS sx to return, even after a top doc like dr. togut performs a rib resection, as it is a progressive disorder, and rather the nature of the beast for adhesions to form and reattach where they're bound to cause trouble at some point down the line...

but that does not, necessarily mean in and of itself that you are going to need a re-do (i.e., a complete scalenectomy). i can totally relate to why your head would automatically go there (mine would, too), though, and boy, i sure hear you on the not wanting to go back on those heavy-duty pain meds thing.:cool: good for you for jumping off in the first place; i know from personal experience that is NO SMALL FEAT.

but hey, you need to address these sx you're having. my thought is, you might even do better to try a good muscle relaxant at this point, and then you might be able to do OK with just say, motrin on the analgesic front. a couple of good ones which are not mind- or mood-altering (or addictive) are zanaflex and flexeril. and don't forget the icepacks, babe!

but if you find that you do need an analgesic stronger than an OTC to take with it, there are some out there which do not contain tylenol (takes the "tylenol worry" aspect out of the equation), such as opana and of course, oxycodone (both of which come in long-acting and short-acting forms alike [although, i must say, i personally do not like the long-acting version of oxycodone - which as i'm sure you know is marketed under the brand name oxycontin]).

we had a med thread not too long ago which you might find interesting; try toying around with the search function (i think if you use the 'advanced search' aspect using ocgirl's poster name you will find the thread...).

do you have a PM doc (schwartzman is the guy, if you're looking!)? also, does your PT have a TOS protocol? there are threads on this kind of stuff which might also be very useful to you right now and may help put your mind at ease as you re-enter "TOS-land," albeit kicking and screaming...:eek:

we are here to help you get through this, and i'm sure you have a lot to teach us, too, with your experience. it's always great to hear from someone who's had such success with a TOS surgery. we don't often get to hear about a sustainable result like yours; for some reason the "success stories" seem to run off, disappear and forget all about us...:(

my hope for you is that these issues that are now resurfacing for you can be addressed with the right type of PT and bodywork, but if you do need to "go back under the knife," well we are here for you for all of that process as well.

you are located in a great part of the country to be afflicted with this nonsense, that is for sure! so count that among your blessings at least, my newfound friend.:wink:

what is the deal with NJ lately? you guys are cropping up all over the dang place! it's frightening!!!

hahaha

alison

Ros Relapse
 

I appreciate your replies. I agree that it is unusual for a success story. I was shocked that it went away. It took a few years, a few surgeries and lots of meds. I am hoping this is not a major deal. I spent a long time trying to get off all the major meds. Oxycontin was one of them. I was medicated so much I don't even remember what I was on. Onfortunately, I had to be admitted to Presbyterian Medical in NYC to get off all meds. Also, I was admitted on September 10. 2001. I watched, from my room, the second plane hit the Trade Center. So, no medication, being away from my husband and children, and experiencing a terrorist attack was extremely difficult. Today I am good. I was lucky to have Dr. Togut. He's a great Doctor. Also, Dr. Schwartzman in Philly is the doctor who diagnosed me. It is very important to find the right ones. So far PT has been minimal. She seems to understand TOS and I will not allow her to do anything that I feel would cause a strain. Thank you for your responses. I really appreciate the help.

Linda

To Olecyn
 

One reason I have not been on the site is out of guilt. I have had 6 years of no pain and have been in contact with DiMarie over the years. But, to go online and see how everyone suffers has been difficult. I hope/pray/and wish everyone could have the pain free days that I have had. If there is any information, or help I can give, that is why I am back. I do not suffer as badly as I had. It, hopefully is just a flare up. I hope anything I can do will help. Linda

1. Someone explain that TOS is "progressive" I don't understand. Progressive means that it inevitably will get worse...but why? If we are talking "compression" and Lin has surgery to relieve her of the compression, why should her pain free condition suddenly progress to compression again? I'd wonder whether the "progression" is that the underlying "cause" was never really resolved but only temporarily resolved. That seems harsh to say, but I don't mean to be harsh...merely trying to understand. She was pain free for 6 years without meds and without PT. So? Scar tissue develops 6 years later because of some unresolved issue is my best guess...this doesn't suddenly "progress" without a "cause." Merely MY understanding.

2. Lin: What is the PT's assessment as to the "cause" initial and return? Have you possibly returned to old habits or work actions that may have caused the original TOS compression only to find that the nerves are being compressed AGAIN from these old habits/work actions?

3. I have to think there is cause and effect and if one is rendered pain free for 6 years and TOS "returns" there is something that was not resolved that caused the TOS to begin with and that was not ultimately corrected. Posture? Muscle weaknesses because of lack of PT exercises for 6 years? I'm not making a judgment here...I'm merely offering possibilities for the return. Only YOU can asses what MAY have contributed to your pain's return.

Hope this helps. If not, flame away...everyone else does.

Return of TOS
 

The cause of my TOS, we believe, was from a medical procedure that was done while I was under anesthesia. It was an immediate reaction. Hospitalization in traction and alot of misdiagnosis. I had disc replacement before the TOS diagnosis. After surgery, one year later, I had become pain free. I did not have any work related incidents or anything else to have caused this. We recently drove to FL which was extremely stressfull. I drove most of the way there and back. I noticed being VERY tense in my neck and arms during the drive. My neurologist said this may have brought on a relapse. I don't know. That was why I posted. Hoping I could get some info from anyone who may have had this experience. I am VERY lucky to have had this time pain free. Also, I am not as bad as I was, or as bad as I KNOW others are. Therapist said something about a disc problem, but, I feel the same as before. I asked for an MRI but doctor said it won't show anything. Just kind of stuck and hoping. Thanks for all of your input. Linda

causes of tos
 

I remember you LinJane from years back at Braintalk.
Dr Ellis has a good explanation about the cause of tos on his website.

http://www.doctorellis.com/

Linda... to be pain free for six yars gives me some hope as to having some sort of future ahead. Than again there are those I have seen on this and the old BT go in for surgery and after never hear the out come, so guess they have had great success. Are you going back to see Dr T ? If nothing else, personally, I would see him for trigger point injections (have somebody else drive) and when you return home take a nice hot bath to let them really take effect !!! These usually quell my trouble spots (GOOBER) for a couple of days. Best of luck & let us know how you make out.

Mark~n~Goober

Welcome back Linda and thanks for your posts! sorry to hear that pain is returning. Is it possible that your c-riblets have grown back? This could explain 6 good years and now sx returning, noname. Or re-aggrivation of the bad disc leading to swelling leading to compression?

Our bodies are so unique.

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.

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.

progression
 

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.

respect
 

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.

Thank you
 

[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.:rolleyes: 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

jaldridge6
 

I'm sorry but when I read your post I laughed. I don't have a specific diet. I'm lucky if I remember to eat during the day!

After my surgery I had a terrible time getting off all medication. I had to go to Columbia Presbyterian for 2 weeks to get me off EVERYTHING. I don't even remember what I was taking. Every time I went to a doctor, they gave me something else. I just figured if it got rid of the pain I'd try it. Once off all meds I was sick for about 2 months. Sick to my stomach. Couldn't eat. A few emergency room visits for iv's. A few months later I became pregnant with my 4th. I ate very healthy during pregnancy. Felt great. No pain at all. Scheduled c-section so as not to hurt my neck. Been great until a long car ride to florida. That's what triggered it. But I have done the drive in the past so i'm not sure why this one was the one. I am trying really hard to monitor my activities. As I said, my diet isn't good. I have lost about 20 lbs in the last 6 months. I'm not a big person so as much as anyone I liked losing the weight it is not really a good thing. So no advice on diet.

jaldridge6
 

I am sorry I forgot to adress the exercise. Sorry, I stopped laughing. The only exercise I get is carrying laundry up and down stairs!

I'm not meaning to joke. It's just I don't seem to have time for anything. Before surgery I did try acupuncture and PT. I think I would like to try massage now. It seems to be in my upper right trap that I have the pain. Last night my husband woke me to let me know I had my arms over my head again. When that happens I wake up in serious pain.

Not sure what you're talking about. I've never ridden 4-wheelers in my life and never carried bags of seed or fertilizer either. I don't really worry about being judged either, but that is very good advice. Another good piece of advice is "to practice what you preach".:rolleyes:

************************
Recently, I mentioned that I am rarely here anymore. I am involved in other forums also and very active in the life of a 6 1/2 year old going on 16.:wink:

On this forum and OBT, advice is given out quite frequently pertaining to the adviser's own condition and also medical advice is given, quite often, whether sound or not.

I have to agree with Fern, "none of us have the knowledge or the right to judge others". Even medical healthcare professionals do not have the right to judge others".

On a thyroid forum, if medical advice is given (directed) to someone, the poster is warned. Second offense, poster is Banned. On a general health forum, this is the same rule. On two heart forums, no one is allowed to post medical advice, unless of course you are a doctor or his/her PA or his/her RN.

Everyone's health problem's are unique. More than 68% of people search for health answers on line at reputable/recognizable, medical sites. The internet is a valuable tool for many things but it also can be one's worst enemy if getting wrong information and believing everything one reads on the net. We all were blessed with intuition and that "gut feeling". We should rely on it. One cannot be too careful in dealing with health issues. You want the best for yourself.
Lisa

There are a variety of sites available on the Internet, and each person is free to seek out those that best meet their unique needs. NeuroTalk is not a professional medical site, but an on-line community for those suffering similar neurological conditions to share experiences, support each other, comfort and encourage. The site's guidelines express that members are NOT medical professionals, and none of us posting here claim to be - we merely offer that which may or may not be helpful based on our experience, and express OFTEN that the poster should check with their Dr if a treatment, therapy or medication might be an option for them.

With the real dearth of understanding of TOS on the part of most medical professionals, it is left to TOS patients to educate themselves about their condition and often how to best approach their PARTICULAR case. Unless you are fortunate enough to have close access to a top TOS Dr and/or PT or other KNOWLEDGEABLE assistance, this usually becomes a case of trial-and-error. By coming together en masse, we utilize a large body of experience, share the latest published information, and inform each other of poissible side effects and/or complications of various medications that often even the MDs are not aware of. We have each others back.

Does that mean we are ALWAYS 100% correct? No, because no one is, it's impossible. But we try, with the best intentions, to help each other. And the errors are usually quickly sorted out, mostly with kindness. Again, it is left up to the individual member to sort and choose which options, if any, they believe might be useful.

If a person comes to a site asking for help, the help is usually offered with good intentions, out of concern for a fellow TOSer. Sometimes judgement is read where none is intended. However posts that blanketly generalize or accuse a whole segment of people, such as those who choose surgery or need meds, are always a concern - it is no different than accusing all Mexicans of being lazy, then adding a disclaimer, if you are Mexican and not lazy, I am not talking about you. Blanket generalizations ARE judgements, and do not belong here.

RedJp - to clarify - off-roading in a 4-wheel drive; heavy bags of [I]something[I]. Due to RSD my short-term memory and word retrieval skills are shot, this is as accurate as I can be.

As I've expressed many times, can't we agree to bury the hatchet?

Peace, beth

Good heavens, Beth. In the first place, I'm at a loss to understand why you were convinced in the first place that I was talking about you in my original post. No where in there did I mention your name or anybody else's and neither would I. If for whatever reason you're absolutely convinced that I WAS talking about you and NOT naming you, then in your quest to always have the last word, you basically "outted" (sp) yourself with that reply.....

And for the record, I have NEVER been off-roading- NEVER. When LisaL mentioned that back on obt, that was a HUGE joke between us. She knows that I was VERY particular about that Jeep and she gave me hell about that. It was an awesome Jeep- lifted, huge off-road tires, etc. but it was a running joke that I never took it off road because I told everybody that that would scratch my paint.:rolleyes: My son always said that vehicle was totally wasted on me and I'm sure he was right.

So, whatever else you have to say, knock yourself out, you're welcome to have the last word but I've said all I'm going to say on the subject

nit picking
 

Sorry If I step in a moment, but I ahve met many in person on this forum. It hurts me terrible when people here have no faces or personalitys to other here and start nit picking.

You know what, agree to disagree with statements please don;t ppick them apart.

LIFE IS TOO SHORT. I found out in the blink of an eyelash anyone of us here could be gone and did it all mattter if someone had personalitiy issues.

I have been told I need to have a watch dog for me not to hurt others with my advice...
SUCKS when you can;t allow your personality to bw what shows on a forum and gruidges are held.

I am taking it personally , maybe because of losing De alll this crap is upsetting.
Can;t we all get along and put it in the past and foget it already...
I love so many here and it this is hurting me as much in my heart as missing De.

Di

You know who was here within a month of De passing away and holding me and who Knew De like an Aunt sharing a hot tub with her, BETH.
Not that the sympathy you all gave me was any less, but Beth was there as your representitive physicallly for me, to all from the forum losing De.

just a little fyi...so there is no misunderstanding when replying to a certain members post....use the Quote button.

it will copy that post onto your post for reference.

i would also suggest that any further discussion on this "conflict" be taken to PM.

i am a bit confused by what you said beth, about NeuroWeb. are talking about posts on another forum? if so, there is no place for that discussion here on NeuroTalk.

Curious
 

Thank you. I try to joke and keep things light because I know wa ALL have major stress in our physical and most personal lives. I can't offer medical advise because I don't have any but basic first hand knowledge of what I have gone through. It would be nice to lighten up the mood alittle. I understand that laughter is the best medicine. Alittle might be nice. I believe we are all here for the same reason.

Linda