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-   -   Tos-losing range of motion (https://www.neurotalk.org/thoracic-outlet-syndrome/22354-tos-losing-range-motion.html)

billy027 06-22-2007 05:23 AM

Tos-losing range of motion
 
After three cts surgeries , I found a new doctor who did first complete emg and found very bad brachial plexus(TOS) and ulnar,median,radial problems along with cts. I finally got approval for the plexus disorder/nerve root problems but still awaiting therapy. My concern is I can no longer raise my arm above my head or reach straight out. If I do reach for something quickly the pain is a 10 excuritating. It fades slowly, has anyone else had the lack of range of motion and this severe pain when using arm. I'm also afraid it will worsen even more. Is this possible? I have some minor pain medicine I will take at times. Even writing this hurts the back of my hand.

Sea Pines 50 06-22-2007 10:43 AM

Hello and Welcome
 
sorry we had to meet like this my dear fellow!

it sounds like you had better pull up a chair and do some reading. see the stickys up top? loaded with more than you ever wanted to know about thoracic whatlet? syndrome...

hey, i sincerely hope you'll join the site and hang around the TOS forum to learn more and hear others' stories.

i think you've already earned your seat...:(

it is very hard to find a good, knowledgeable PT who knows how to work with an injury like this one. TOS can be a difficult taskmaster, my friend, to say the least.

what part of the country are you in? maybe we can help you find someone most excellent.

another good person to add to your treatment team would be a bodyworker of some sort. there are several options and a few have national networks, which make the process of finding a master practitioner a bit easier. i am speaking of hellerwork, alexander technique, feldenkrais, muscle activation technique practitioners and the like.

but one step at a time, OK? others will be along shortly to welcome you and to chime in with suggestions and to put up links for you (which i suck at).

i'm sorry this is happening to you but glad you have found us. i think you'll find that you'll be able to get some answers now that you finally have an accurate dx. the floodgates are about to open! look out.

i wish you the best of luck on your journey. pick up a few icepacks if you don't already have some - they're my "woobies" and i don't travel far without them... CVS has a good one on sale right now actually which you can use cold or hot (microwavable). it's made by thermionics, called thermipaq, costs around $15. i ice my brachial plexus, neck, shoulder, forearm, hand, whatever's flaring...

be good to that arm, now, and don't do anything that causes pain or nerve symptoms. but i wouldn't use an immobilizer or a sling, either, as you don't want to end up with a "frozen shoulder." this is a sticky wicket i'm afraid, but there are lots and lots of things for you to try. lurk, read, post as you are comfortable. we are all more than happy to help you. we need you just as much as you need us, so i do hope you'll stay.

you won't be bored here, of that i am pretty sure!:D

alison

johannakat 06-22-2007 10:47 AM

yes yes and yes?

the longer you have had compression the longer it can take to heal, is the general rule. If you have very severe compression, sometimes it will never get competely better. It is very individual, though. SO I don't think any of us could give you a good answer. TOS surgery success is defined as "50% or greater reduction in symptoms" so one way to look at it is that you will probably always have to be careful, but good PT, or in some cases surgery, can make a big improvement and help you feel a LOT better.

PT and other modalities:
try PT for a while, but look hard for a PT that is qualified to treat TOS. THey are few and far between. Concentrate on some myofascial release, ultrasound, electostimulation, soft tissue mobilization... and be GENTLE GENTLE GENTLE on yourself. pain=you did too much. Now, sometimes, of course, you have to live your life and get through the day, most of us can't make it without doing things that cause us pain, buit do your very best to avoid things like raising your arm quickly. You should be working to get very gently to the end of your range of motion and ever so slightly past it, just to the point of stretch, not pain. DO not let any PT start you on strengthening exercises or other activities that hurt you or make you feel worse!!!

there are hundreds or resources on the stickes and the wonderful people on this forum. and they will chime in as well i am sure.

If PT does not help you, there is the option of TOS surgery, but the success rate is not huge. You really want to try some good PT first for probably at least 6 mo.

Pain Control:
As for pain, is is really important that you give your body a chance once in a while to NOT feel pain. Ask for enough medicine at the very least to sleep comfortably (as this will make EVERYTHING better) and more for during the day if you absolutely have to do things. It is very very difficult to be in pain all the time, and there is no reason for you to have to be that way, in fact it is your RIGHT to have enough pain medicine to not feel miserable!!!!! So stick up for yourself, there.

SOrry you have to find us under these circumstances...but this is a fantastic group of poeple who can help you sort out your TOS questions...a WEALTH of experience and suggestions!!!

Hope I am not scaring you with this. It can be overwhelming to find out that something is never going to go away. I know that finding this board and reading the experiences of the people here was very difficult for me in the beginning. Keep your chin up, and be thrilled that someone has helped you find the correct dx...k?

Johanna

johannakat 06-22-2007 10:47 AM

see, i told you others would chime in..ALison is the welcome wagon :)

billy027 06-22-2007 11:00 AM

Thank you
 
Thank you Allison and Johanna,

Just last night I was playing with the dog and tried to get the toy from him but he didn't let go and my arm flew backwards. The pain was so intense it made my eyes water. Thankfully, it calmed down after a while. But the intensity was unbelievable, I yelled out. Still a bit sore today. I have a generic Daviset that I only take on bad pain days. It helps.

I am in New Jersey? Pennsylvania area and have a good dr. now. The first one had three minute visits. quick to operate and never looked for causes other then cts. Always was mad when cts showed up again on EMG's after surgery.
Was battle to get owcp to accept plexus disorder, but they did after thier dr. agreed with it.

Brachial plexus was 51 mg/s on first thorough emg. about five months ago. Is that really bad? I think 70 is normal.

Thank you again for your quick responses

Jomar 06-22-2007 11:28 AM

Hello,
Have you have xrays or MRI of the cervical spine and thoracic spine?
These help to rule out other issues that can cause arm pain.

I'll post the useful sticky link for you-
http://neurotalk.psychcentral.com/showthread.php?t=84

If you have even had whiplash, concussion, or any upper body hit, fall or sport injury you might consider getting a evaluation by a expert chiropractor. If a head/neck hit maybe by one that specializes in the C1/C2 cervical adjustment.
sounds scary- but I have had it done and it is very gentle and painless.
the first post in the stickys has a section with chiro info sites.
Take the time to find a very expert and knowledgeable DC - but this applies to most anything anymore.....
My DC does PT type treatments also and is partners with a massage/PT therapist.

HopeLivesHere 06-23-2007 11:43 PM

Hello and welcome,
I've pretty much had the same experiences you describe. But I have never nor would I ever do that with a dog. I hurt just thinking of the tugging :(
I wish you the best in finding a treatment that works for you and for relief of your pain.
Hope

Monilynne 06-24-2007 06:36 AM

I have the problem on my left shoulder. Haven't been able to properly raise it over my head for about 4 years. Used to have the most beautiful hair and be able to do all kinds of things...but without the arm usage...not anymore. Also had crappy doctors for a while that knew nothing about how to help TOS which made it worse. But its to the point it won't get better..and now my right is starting to do the same thing. Very painful...I use lots of ice and keep them moving as must as I possibly can. Hence the reason I'm waiting for disability to go thru.

billy027 06-24-2007 06:43 AM

I'm waiting for therapy to be approved
 
Finally got plexus/nerve root disorder approved(Tos) after seeing work doctor. He actually yanked my arm straight up after I said I couldn't raise it. I yelled in pain and it hurt for days. At least he agreed with my doctor but hurt me in the process. From three cts surgeries and also having ulnar, median and radial nerve problems in right arm, I have very little strenght. Its very hard not to use when your right handed.
I had a 51 m/s on plexus emg. Is that really bad?

Sea Pines 50 06-24-2007 03:45 PM

That Just Burns Me Up
 
sorry, i'm not a W/C case, but others here are... what state are you in? there is a W/C forum here on neurotalk which you might find helpful.

i CAN tell you that what that doctor did to you is just plain WRONG. i am not an attorney but it sure sounds actionable to me. he had absolutely no right to do that to your arm, and i am sorry that happened to you. i can only imagine the immediate, sheer agony that must have caused you, not to mention the aftermath. what a d-ickhead!

shameless! if i were you, i would seek out the advice of a top W/C attorney, one that is not only well-versed in medical malpractice (for that is what you are describing, if i ever did hear of any examples my friend... that is one!:( ) but also who knows something about and has handled and prevailed in work-related TOS cases.

i think you said you were near PA, is that right? if so, that is very good news, for reasons which will become clear to you soon enough. but the lawyer should be admitted to the bar in the state in which you filed your W/C case. was that NJ or PA?

also, didn't mean to ignore you on your question re the EMG measurements. i simply don't know the answer. i don't recall that coming up in connection with any EMG or NCV study i've ever had done. here's a good link for you though (and maybe a good doc, if you can get him OK'd - go see dr. fried he's very highly spoken of by other forum members and could go over those EMG results with you, explain them to you better than any of us could, that is for sure!:)): http://nervepain.com.

i'm glad the pain and other sx did calm down after the doctor pulled your arm straight up like that. did he think you were faking it or something? whatever happened to "first do no harm?":eek: :eek: :eek:

i'm sorry but i find that behavior unconscionable. was there a nurse in the room? any witnesses? this man could have worsened your original injury, my friend. worse, he is in a position to know that.

get an attorney. there are ways to find out who the best guys are if you are interested. i think your rights and your person have been violated here, or i wouldn't say anything. now that i'm thinking about it, it might even be a separate claim; i don't know. also, FYI, under this type of legal arrangement the attorney usually works for a fee that is paid out of the final award or settlement of your case, so the upfront costs are zero or close to it...

i don't mean to upset you. we are here to help.

alison

billy027 06-24-2007 04:11 PM

Doctor
 
Thanks Alison,
You are very nice and helpful.
I do have Dr. Fried!!! He is great! He diagnosed tos after first doctor did three cts surgeries. I kept telling first doctor something was wrong after surgeries and he kept doing partial emgs. Acting like he didn't believe me. He always found out I was telling the truth but he never investigated further. Just wanted to operate, finally I was able to switch to Dr. Fried.
I do have attorney and wrote letter stating about what that doctor did. My wife was with me. I don't know if it can be pursued further but I gave letter to Dr. Fried and lawyer about what he did.
Arm sore today because I wrote a little.

Bill

johannakat 06-24-2007 11:36 PM

emg numbers...i am not sure if this is the same number, it is called: "stimulation of the cervical root at C7 across the thoracic outlet" adn listed under Ulnar nerve measurements
51M/sec on the left and
46M/sec on the right

I have no idea what "normal" is, but I do have TOS pretty bad, just had surgery on the left and waiting just till i am recovered enough to do it on the right.

horsemommy 07-02-2007 02:27 PM

Hello
I'm new here, having just been diagnosed with TOS. although I've been telling everyone for 3 years! I feel your pain tho. I found if I keep moving (slowly and methodically) everyday it's not as bad. If I overwork it AAHHH the muscle pain is a killer! (I no longer have all the feeling in my left arm from the nerve damage :( ) But it never locked up on me. That sounds like scar tissue or the lack of fibrins left in the muscle (the stuff which gives the muscle elasticity).
Where in NJ are you? I also live in NJ. South of Trenton in Burlington Co.
It's nice to know someone else in NJ who knows what I'm dealing with. The family just doesn't understand the daily struggle working and running a horse farm has on my arm.
Who is your doctor? I found mine thru a friend who works at Deborah heart and lung. He was actually recommended by the chief of cardiothoracic surgery.
I have one more test before we talk about surgery and frankly I'm alittle scare with some of the results I've been reading about. Although I wonder if all these doctors were general/vascular/thoracic or cardiothoracic dr's. (I work for gen.vas/thoracic drs AND WE DON'T DO THESE SURGERIES due to the high risk!! We leave them up to the cardio guys. I'm very confident in this guys work but the rehab has me gringing. I almost don't want to have it done.
Are you looking into surgery or are you going to do PT?
Either way good luck.
horsemommy

olecyn 07-02-2007 03:30 PM

O My God
 
I agree with Alison,
If a doc did that to you...makes me angry.
An IME did that to me recently and my husband almost took his head off as I agonized in pain. He later went on to say on his report I was exaggerating all my chronic pain sx and did NOT have TOS.

This doc has no clue, no education on TOS, the chronic pain it brings and treatment.

Get yourself to a KNOWLEDGABLE TOS expert like Dr. Togut or...so many others here on the east coast will get you there.

olecyn 07-02-2007 03:35 PM

Tos Pain
 
Never do ANYTHING that creates immediate pain.
"No pain, no gain" is NOT part of the everyday life of TOS.
Chronic pain specialists say it takes up to 18 hours after you have done something too much to go into a flare.
So, immediate pain is a NO NO...

Quote:

Originally Posted by billy027 (Post 115929)
Thank you Allison and Johanna,

Just last night I was playing with the dog and tried to get the toy from him but he didn't let go and my arm flew backwards. The pain was so intense it made my eyes water. Thankfully, it calmed down after a while. But the intensity was unbelievable, I yelled out. Still a bit sore today. I have a generic Daviset that I only take on bad pain days. It helps.

I am in New Jersey? Pennsylvania area and have a good dr. now. The first one had three minute visits. quick to operate and never looked for causes other then cts. Always was mad when cts showed up again on EMG's after surgery.
Was battle to get owcp to accept plexus disorder, but they did after thier dr. agreed with it.

Brachial plexus was 51 mg/s on first thorough emg. about five months ago. Is that really bad? I think 70 is normal.

Thank you again for your quick responses


olecyn 07-02-2007 03:37 PM

Writing
 
Is the worstest besides posture...
small motor skills are killed by neurovascular TOS

Quote:

Originally Posted by billy027 (Post 116586)
Thanks Alison,
You are very nice and helpful.
I do have Dr. Fried!!! He is great! He diagnosed tos after first doctor did three cts surgeries. I kept telling first doctor something was wrong after surgeries and he kept doing partial emgs. Acting like he didn't believe me. He always found out I was telling the truth but he never investigated further. Just wanted to operate, finally I was able to switch to Dr. Fried.
I do have attorney and wrote letter stating about what that doctor did. My wife was with me. I don't know if it can be pursued further but I gave letter to Dr. Fried and lawyer about what he did.
Arm sore today because I wrote a little.

Bill


billy027 07-02-2007 03:49 PM

No surgery yet
 
Who is your doctor? Dr. Fried-he is great

No plans for surgery at this time. Do take pain meds at time. Just Daviset.

I love writing but its killing me.

Ime put in plexus disorder/nerve root nes and wc added it to cts/palmer fascilia claim

At least he didnt disregard plexus-i guess that means tos. the ime did hurt me though.

olecyn 07-02-2007 05:58 PM

Ime
 
IME I saw was from the OC, Cali.
U have nothing to worry about back there.
He'll be getting a wake up call here shortly to get him OFF the State referral board of IME's for Neurovascular conditions.

Happy to hear u have a gr8 doc on the east coast.

Writing, working on W/C and disability legal work, sitting and at the compooper is the worstest besides everyday functions of life.

AFter 7 years of TOS, I finally found the bestest doc of PT. Keeps my range f motion at bay , the swelling down and muscle spasms at bay. Thats until I start using my arms or hands. Pace, steady and calmly as she goes.......


Quote:

Originally Posted by billy027 (Post 119533)
Who is your doctor? Dr. Fried-he is great

No plans for surgery at this time. Do take pain meds at time. Just Daviset.

I love writing but its killing me.

Ime put in plexus disorder/nerve root nes and wc added it to cts/palmer fascilia claim

At least he didnt disregard plexus-i guess that means tos. the ime did hurt me though.


noname 07-04-2007 10:36 PM

I will chime in...probably the minority viewpoint...so take it for whatever it is worth....

I have bilateral TOS..more left than right. Left is the painful side. Nerves, arteries and veins are compressed. Verified by Dr. James Collins, at UCLA.

I have worked with PT and exercise and found help. It is a SLOW process but I am making gains. Less flare ups and less intensity when I do flare up.

In the beginning I had one pain that I sort of played with (this before my dx). I called it "gunk" because it felt like gunk in my left shoulder. It limited my ROM with my left arm and created one of many of my "pains." I did yoga and there was a stretch in yoga called "extended cat dog" which while in Cat you move all the way to child's pose but your arms are stretched out if front. I would often have limited ROM to do this stretch because I'd start and I'd have pain. :( I decided one day to play with it and "push through the pain." My instinct told me that perhaps the muscle or whatever "gunk" was knotted up and would release if I did several reps of the extended cat dog. Sure enough it did after about the 3rd to 4th repetition. It was miraculous. Everytime I had this particular pain...I'd do the extended cat dog and voila...it would go away (I still had other pains but at least I was able to do something that would take care of the one in say 5 that I had). Eventually this "gunk" disappeared never to return.

Lately I've felt like I have gunk somewhere else nearby...still left side..but I feel it more when I try to raise my left arm...same idea...limited ROM..pain. Yesterday and today I tried to push through it...I found a reverse sort of windmill and after about 2-3 of those it goes away..of course it seems determined to come back within 5-10 minutes but clearly it does go away such that I can fully extend my arm over head without any other compensating muscles kicking in. I do not seem to flare up afterwards...but it is early and I sense that I will not as a result of this. I can only conclude that YES, at times there is GOOD PAIN that you need to push through to get a release of a muscle contraction/knot/compression.

I certainly will contact my old PT to ask her about it but I'm confident that she will agree to keep doing it if it is not causing any flare ups.

Just my 2 cents.

billy027 07-05-2007 06:12 AM

I am struggling
 
with holding a pen/pencil. My grip is giving out. Adding to my problems is that I have besides tos, median,radial, ulnar and carpal problems on same arm as brachial plexus. I still cannot raise my arm above my ear or reach straight out without terrible pain.

I love writing but its not possible now.

DDayMBB 07-05-2007 11:34 AM

Quote:

Originally Posted by olecyn (Post 119525)
I agree with Alison,
If a doc did that to you...makes me angry.
An IME did that to me recently and my husband almost took his head off as I agonized in pain. He later went on to say on his report I was exaggerating all my chronic pain sx and did NOT have TOS.

This doc has no clue, no education on TOS, the chronic pain it brings and treatment.

Get yourself to a KNOWLEDGABLE TOS expert like Dr. Togut or...so many others here on the east coast will get you there.

Billy, I am fortunate enough to have Dr T in my back yard so to speak and he was the first Dr that I had seen post work doctors. He was amazed the living hell that they put me through and on my first meeting with him (3 1/2 hour appointment) he ruled TOS and imediately took me out of work and told me any type of resistive exercise would result in futher decompensation. Unfortunately, my TOS has progressed into RSD, but I think that was just lying under the surface waiting to rear it's ugly head!
He does promote light water therapy and in my area there is a rehab pool where the water is kept at a constant 91 F, which during the winter on those days of minus 20 F feels wonderful !!! Johanna, Alison, Jo ... among others who may chime in have been through the war for a while now and surely will pass along tips in survival in living with the beast TOS as far as ROM Billy sorry to say that is one thing we all learn to adapt and live with and if you need to talk or vent this is a good place to do so as we understand where you are coming from... it is real, regardless what others may think or say there are a lot of creul people in this world even among the medical ***PROFESSIONALS*** !!!!

MY BEST !!!! Mark~n~Goober

Jomar 07-05-2007 12:01 PM

sometimes you need to totally rest for awhile - but still do some ROM and very gentle stretches and be aware of shoulder/neck postures.
I really feel that finding Sharon Butlers TOS program and even just doing the first 4 things has been a great help for me. I still do those when I feel I need to loosen up.

Then as symptoms ease {hopefully they will} don't be afraid to explore with gentle movement and motions as noname suggests. Exploring and learning what your own body can do is the key.

I had a similar experience with my RSI therapy - got to a point were the forearm pain was constantly @ 2 - PT hooked up a biofeedback unit and my forearm muscles were not fully relaxing. PT suggested some exercises with 1 lb weights for my wrists/arms. slowly to lifting up and lowering and then let my wrist/hand hang over the edge of a table and the weight would help to stretch. It was more sore the next day but as I carefully did more over the next days the deep achy arm pain went away.:)
But another sx showed up - more of a just under the skin pain - but now I know this is from my version of TOS - the musculocutaneous nerve gets compressed or impinged.

Each of us is so different as to our injury/condition that what helps for one may or may not help someone else.

That's why I think finding a knowledgeable, well rounded and advanced PT, Chiro, body worker, or somebody etc -to help you get a good start on this self exploration is so important.
Hopefully too, they can use some modalities {heat, ultrasound, E stim, low level laser, massage} to help to resolve some of the pain, before getting into too much active uses. so much will depend on communication and how your body responds.

Oh and there are some really interesting and helpful posture, massage, chiropractic- all kinds of therapies you can get a idea about them on the YouTube or Google videos - it is great for an educational tool to see how the good or bad or if it might be something you can do at home that is easy for you.

billy- how did you acquire TOS? from an injury /accident or repetitive type work??

Sea Pines 50 07-05-2007 12:45 PM

Don't Try This @ Home, Kidz
 
sorry, noname, but i have to respectfully tell you, i think it is a little bit irresponsible to encourage people with neurovascular injuries and/or entrapment disorders to try to "push through the pain" using yoga poses such as the one you describe. and to do so without the input of a trained PT, no less, beforehand? sheer madness, i say!

in fact, we have at least one forum member whose very injury was caused if not severely exacerbated by doing this very type of thing. now, perhaps you are young enough or your TOS mild enough that you can still get away with doing things of this nature. but i certainly wouldn't advise anyone else to try it...

that is just asking for trouble, in my humble opinion. TOS is a very harsh taskmaster. it is nothing to fool around with and a confounding thing, to say the least. what feels like muscle pain is really nerve pain, and vice versa. the nervous system is in a constant state of hyperexcitement due to injury to and/or ongoing compression of the BP, and the involved musculature is in a constant state of spasm in a futile attempt to protect the affected nerves and blood vessels, and 'round and 'round she goes, where she stops, nobody knows...

ayenga yoga taught one-on-one by a certified instructor trained to work with people with injuries is one of the few forms of yoga i can tolerate, personally. and i cannot even do that right now. yoga simply has too many arm movements for me and for many other TOS'ers that i know. so does t'ai chi... and i LOVED doing t'ai chi when i could manage it!

so i think it's great that you have gotten your TOS under control, or that your case is not that advanced, or whatever the case may be for you personally. i'm just a bit nervous about putting specific movements up on a board like this one that someone else may unwittingly then try for themselves, with potentially disastrous results if not closely supervised by a trained and caring professional.

i know that's not your intention, but you see my point, i'm sure (i noticed you say you're in the minority view; perhaps that is what you meant by that remark?). i am all for PT, bodywork and other modalities, home programs including yoga, don't get me wrong! just easy does it. we don't want anyone to reinjure themselves. and with the TOS personality, it's just too easy to do!!!!

so even though you don't expressly say everyone should try to do this certain yoga move, it worked for me - there is a danger that someone might do exactly that. that is my point. nothing more, nothing less. i hope you won't take offense at what i'm saying here. i just don't want anyone getting hurt (more hurt than they already ARE, i mean).

and oh, just as an aside to bill: FYI - the nerves that comprise the BP (C-5, C-6, C-7, + C-8 & T-1) branch out to become the 3 main ones in the arm that you mention, median, radial and ulnar. so these are not SEPARATE dx's or issues for you, my friend. it all falls all under the TOS umbrella, i'm afraid!:rain: you may have some double- or triple-crush issues going on, but i'll bet you even $ the original injury was in the BP. that's where the trouble began, and that is what set you up for the nerves to become vulnerable elsewhere as they travel down that big strong arm of yours...:wink:

but fear not! now that you have the right dx and the good doc fried, help is on the way. hey, have you heard of a PT named suparna over in allentown? i've heard she is running one hell of a program over there... check it out, bill! googlebreath! i want to go stay there for 8 weeks but i need shelley to take a roadtrip with me and she's all talk and no action, apparently...:D

bye, kidz. and no offense, noname. i wish you had a name and i always enjoy reading your posts, because we need different viewpoints to keep this forum alive and the info flowing!

alison

billy027 07-05-2007 01:34 PM

got tos from
 
repetitive motion. Diagnosed as cts, had three unsuccessful cts surgeries making it worse each time before finding good doc. Mine is advanced and cannot push it or the pain is unbearable. I cannot even write without terrible pain in elbow and back of hand. I tried today: OUCH! right now.

Thanks everybody for the information. Thanks a bunch, Alison

Bill

noname 07-05-2007 02:17 PM

Quote:

Originally Posted by Sea Pines 50 (Post 120534)
sorry, noname, but i have to respectfully tell you, i think it is a little bit irresponsible to encourage people with neurovascular injuries and/or entrapment disorders to try to "push through the pain" using yoga poses such as the one you describe. and to do so without the input of a trained PT, no less, beforehand? sheer madness, i say!.

where in my post did I "encourage" or advocate that others do what I did? Please do NOT put words into my posts that are not there. Too often people on this board right away want to flame me for advocating something that is NOT there and was NOT ADVOCATED or encouraged. This life is all a big experiment and one needs to LISTEN to their own bodies for cues and treatment. That's all I do. That's all I represented. For whatever VALUE MY experience might be worth, someone else could benefit. At the same time someone else might not benefit. Shame on you for putting words in my post that are not there. I merely offered MY experience and as Jo said...EACH PERSON IS DIFFERENT.

What I will advocate and encourage is that members LISTEN to their OWN BODIES for signs, signals etc. The patient is the best source for what treatment may or may not work. No doctor, PT, Chiro, Massage Therapist is INSIDE YOUR BODY. Only you are and know what is actually going on. The professionals can guide you and suggest what may be happening.



Quote:

Originally Posted by Sea Pines 50 (Post 120534)
in fact, we have at least one forum member whose very injury was caused if not severely exacerbated by doing this very type of thing. now, perhaps you are young enough or your TOS mild enough that you can still get away with doing things of this nature. but i certainly wouldn't advise anyone else to try it...

I didn't. I offered MY experience, MY efforsts, MY results. G-d forbid I say X drug helped me...then no one posts that "hey you shouldn't be advocating X drug" no, the posts then become..."really, where can I get X drug." That's the problem IMHO. People are too quick to pass judgment, assume and then take medications rather than DEAL with the cause. Again, I'm NOT passing judgment...I'm merely relaying what I perceive...you can disagree all you want...and I'm not saying YOU are part of a class of members that do not deal with the situation...but I'm sure you will feel like I'm accusing you...I"M NOT! Look at my original post...I relayed MY EXPERIENCE. To the extent that it might help someone, great...if not...oh well. But we are ALL looking for ideas that might help us. I did NOT advocate this approach. I did not recommend others do DO what I did. It is ALL up to the members who LISTEN to their own bodies to determine if something posted MIGHT work for THEM.

Quote:

Originally Posted by Sea Pines 50 (Post 120534)
that is just asking for trouble, in my humble opinion. TOS is a very harsh taskmaster. it is nothing to fool around with and a confounding thing, to say the least. what feels like muscle pain is really nerve pain, and vice versa. the nervous system is in a constant state of hyperexcitement due to injury to and/or ongoing compression of the BP, and the involved musculature is in a constant state of spasm in a futile attempt to protect the affected nerves and blood vessels, and 'round and 'round she goes, where she stops, nobody knows...

TOS IS a very touch task mster. It is nothing to sneeze at. I have worked VERY HARD to find relief for ME. Never advocated that what works for me would work for someone else. IT MIGHT THOUGH. It is an experiment...and I AM willing to experiment to a certain extent with MY body to get relief. So far I'm improving WITHOUT DRUGS. (and I hear a large segment already assuming that I must not have TOS or as bad as they do...to those...don't judge me...I'm not judging you!). I'm not saying relief can be obtained without drugs...I'm saying FOR ME I will do whatever I can to avoid drugs, surgery etc. So far it has helped. My doctor is VERY PLEASED with my progress and improvement. He wants me to talk with some of his other TOS patients. He agrees that many (not all) do give up way too soon and resort to drugs and surgery way too soon. Again, this is NOT a specific accusation to any particular person or to you...it is just my relaying what I perceive and what my doctor has also expressed as HIS perception. Yoga has many elements to it that are very therapeutic for many ailments. Not every Yoga pose is therapeutic FOR ME. There are a few I could do, but not without aggravating tis condition. Thus FOR ME, I do not do every Yoga pose. There are many though that have helped me. Those I incorporate into my mini therapeutic recovery sessions. I attribute my progress to those as well as other exercises and stretches I have found and been given.

Quote:

Originally Posted by Sea Pines 50 (Post 120534)
ayenga yoga taught one-on-one by a certified instructor trained to work with people with injuries is one of the few forms of yoga i can tolerate, personally. and i cannot even do that right now. yoga simply has too many arm movements for me and for many other TOS'ers that i know. so does t'ai chi... and i LOVED doing t'ai chi when i could manage it!

You need to pay attention more to what I post if you are going to accuse me of things. I mention Yoga...I didn't say everything about Yoga is therapeutic. I mentioned ONE or TWO poses that HELPED ME. There are a few that I should not do and don't. Eagle for one because it will compress the BP. I don't do Eagle for that reason. I will do chest openers because FOR ME they help. There is some discomfort but I know FOR ME that that discomfort is part of the healing/work I need to do. It HELPS me. It has HELPED me.

What I will say is that as scared as I was to "push through my pain" I'm glad I did. Do I advocate it to others? No! Is it something someone SHOULD consider? Perhaps...but only if they are LISTENING to their bodies and are willing to take whatever risk is associated. It may be no risk, then again it may be a big risk. By all means consult a PT, doctor before taking such a risk. I didn't because I trusted that I am a good body listener. I will certainly advise my doctor and PT what I'm doing to get their input. But the body tells me that it IS helping ME. Not sure but sometimes there is GOOD PAIN that one must push through to get relief. The trouble is knowing the difference. Some people view ANY PAIN as bad. That attitude does not work FOR ME.

Quote:

Originally Posted by Sea Pines 50 (Post 120534)
so i think it's great that you have gotten your TOS under control, or that your case is not that advanced, or whatever. i'm just a bit nervous about putting specific movements up on a board like this one that someone else may unwittingly then try for themselves, with potentially disastrous results.

See now you get a bit judgmental and "assume" that because I'm getting better or some relief, my TOS might not be as advanced. I let that go over my head because it doesn't fit for me. This is not a matter of who's TOS is worse and "wo is me" This is a matter of exchanging ideas and treatments. What works for one person may not work for another...but it may work for some others. Should I keep it to myself? How is that helpful? Lets keep all successful treatments to ourselves so that no one else has the possibility of recovery. Nope. Not me. Read my post again. I didn't advocate a thing. I didn't encourage a thing. I relayed MY EXPERIENCE ONLY. FWIW


No offense taken BTW. But I do want to be clear because invariably I will get some PMs that I'm being too judgmental and not empathetic etc.

I should probably add a disclaimer to my posts: WARNING the following worked for me...it may not work for you....if you try what I did you do so at your own risk. I'm not a trained PT, Doctor or health professional. I make no representations good, bad or indifferent.

DDayMBB 07-05-2007 02:19 PM

Billy, means by no means was I telling you what to do... it was what the doctor told me to do. I am sure you will find out what you can do I always found it best to listen to my body and not to over do. I may have missed it, but what part of the country are you from? I noticed Alison had written about a PT listed in Allentown is that Pa ??? Oh well like you typing does take it's toll and I am reaching my limit !!!

Mark~n~Goober


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