[jennyk38]

Hi everyone,

I usually go to rsd site because that is what I have been diagnosed with to my right upper extremity. I guess I am wondering if there is any way to definitively tell the difference between rsd and tos. I ask because the symptoms are so similar and because I have some of the predisposing conditions linked to tos. I hope I am making sense....I guess I should give some of my medical hx?

I was thrown into a metal door frame while at work in 2004. I developed excruciating pain to front of the shoulder. My ortho doc suspected a rotator cuff tear and ordered an mri which did not show a tear but pain continued despite cortisone injections and physical therapy. He eventually scoped my shoulder and did indeed find a medium size full thickness tear and repaired it while he was in there. He also did an acromioplasty and debrided a tendon and diagnosed me with impingement syndrome. After the surgery the pain to the front of the shoulder disappeared but unfortunately I developed persistent, chronic pain to the back of the shoulder. I went to physical therapy religiously and had many, many more steroid injections but was unable to lift my arm above waist level.
So my doctor said "frozen shouler" and did a second surgery to remove build up of scar tissue. (sorry to go on and on) anyway, after second surgery I again had persistent pain to back of shoulder but I switched pt's and did manage to regain full range of motion. However, I also developed a tremor to my right hand, tingling and numbness to the right hand, mottling to the right arm, my left hand is almost always colder than the right and my physical therapist said that i have a winged scapula and that my arm doesn't glide right and also had large fibrous bands to the back of shoulder. I also have extreme weakness to right arm, lifting it up and/or holding it up, even to type this causes extreme discomfort.... (again I apologize for the length of this post ) I have recently started seeing a chiropractor who took x-rays of my neck and he says i have extreme forward head posture, my pain management doc thinks i may also have cervical radiculopathy and I think I may have tos with rsd or maybe just tos? anyway, I have read quite a bit about this syndrome but would really appreciate hearing from people who have first hand knowledge. Your thoughts, responses will be greatly appreciated and thank you in advance for your time and consideration. jenny

[DiMarie]

Hi Jenny,
Nice to say welcome to the orum, but sorry it is for investagating TOS.
This is a link I often refer for symptoms that are covered for TOS.
http://www.nismat.org/ptcor/thoracic_outlet/

Thoracic outlet is the area behind the collar bone and in front of the first rib that the vascular bundle, and the brachial nerve bundle of the cervical nerves C5/6/7/8 &T/1. They are one long cell that travel three feet to the finger tips, branching off into the major nerves of the arm and hand.

The picture shows the site, this lies behind the collar bone, if your press behind the collar bone about midway from the center to shouldre, press inward preety good it should be tender.

Also, if you raise your arms like your are being robbed, up and back, AND I MEAN BRING THEM BACK. Raise so elbows are at the shoulder height hands open face forward, (Feel in in the center in the back of you are doing it right),
Now hold them up for three minutes close and open the hands, waht do you feel and where? Stop when you have to, it there is pain, heaviness, symptoms or too much fatigue.

We want to feel better so we tend to let our arms come forward doing this, but to close the outlet to compress if the nerves are being compressed, you need to get back and feel like the wings are going to each other not rounding your shoulders so it feels better.
Others will be along to put some thoughts in also.
The one important thing to diagnosisng is to understand, many doctors can say they think you may have TOS, but they have likey never seen a case or know how to treat it.
Find a TOS specialist. They will take about 2-3 hours to review records, reproducing testing, order test that you may need to assist in diagx..ie) rule out other syndromes.
Dianne



What causes the neurovascular compression?Compression occurs when the size and shape of the thoracic outlet is altered. The outlet can be altered by exercise, trauma, pregnancy, a congenital anomaly, an exostosis, postural weakness or changes.
Below is a list of the component syndromes which comprise thoracic outlet syndrome along with a brief description of each. Refer to the scheme for questions about the gross anatomy of the region.

Anterior scalene tightness
Compression of the interscalene space between the anterior and middle scalene muscles-probably from nerve root irritation, spondylosis or facet joint inflammation leading to muscle spasm.
Costoclavicular approximation
Compression in the space between the clavicle, the first rib and the muscular and ligamentous structures in the area-probably from postural deficiencies or carrying heavy objects.
Pectoralis minor tightness
Compression beneath the tendon of the pectoralis minor under the coracoid process-may result from repetitive movements of the arms above the head (shoulder elevation and hyperabduction).

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What sort of activities can cause these compression syndromes?Thoracic outlet syndrome has been described as occurring in a diverse population. It is most often the result of poor or strenuous posture but can also result from trauma or constant muscle tension in the shoulder girdle.
Static postures such as those sustained by assembly line workers, cash register operators, students of, for example, those who do needle work often result in a drooping shoulder and forward head posture. This position of the shoulders and head is also indicative of poor upper body posture. Middle aged and elderly women who suffer from osteoporosis often display this type of posture as a result of increased thoracic spinal kyphosis.

Carrying heavy loads, briefcases and shoulder bags can also lead to neurovascular compression. Humans are not well adapted as beasts of burden and heavy loads hung form the shoulders and arms can stress the supporting structures of the shoulder girdle which is basically suspended by the clavicle and all of the component ligaments and muscles.

Occupations which require repetitive over head arm movements can also produce symptoms of compression . Electricians, painters and plasterers may develop hyperabduction syndrome. Compression of the neurovascular structures also occurs in athletes who repetitively hyperabduct their arms. Swimmers, volleyball players, tennis players and baseball pitchers may suffer compression of the neurovascular structures as well. However, compression of these structures may be caused by stretching or microtrauma (small tears in muscle tissue) to the muscles which support the scapula.



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Are there other causes of thoracic outlet syndrome?Some people are born with an extra rib right above the first rib. Since this intersection of nerves, vessels, muscles, bones and ligaments is already quite involved one can imagine what the presence of an extra rib in the region might do. A fibrous band extends from this cervical rib to the first rib causing an extra bend in the lower part of the brachial plexus which may produce a compression in this region.


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How is thoracic outlet syndrome treated?The first step to beginning any treatment begins with a trip to the doctor. Make a list of all of the symptoms which seem to be present even if the sensations are vague. Make a note of what activities and positions produce or alleviate the symptoms and the time of day when symptoms are worst. Also, note when the symptoms first appeared. This list is important and should also include any questions one may have.
Due to overlapping in terms of symptoms it’s difficult to make a definitive diagnosis; this is why a list is so important. Certain diagnostic tests have been designed which are very useful for examination. These tests involve maneuvers of the arms and head and can help the practitioner by providing information as to the cause of the symptoms and help in designing an approach to treatment. These tests, accompanied by a thorough history help in ruling out other causes which may produce similar symptoms. These include Pancoast tumor, neurofibromas, cervical spondylosis, cervical disk herniation, carpal tunnel syndrome and cubital tunnel syndrome. Don’t forget to ask your practitioner about these conditions as well.

Here are a few more commonly applied provocation tests used in the diagnosis of thoracic outlet syndrome. These tests may or may not momentarily reproduce symptoms but as was mentioned earlier are important in ruling out other causes which may produce similar symptoms.
EAST Test or "Hands-up" Test
The patient brings their arms up as shown with elbows slightly behind the head. The patient then opens and closes their hands slowly for 3 minutes. A positive test is indicated by pain, heaviness or profound arm weakness or numbness and tingling of the hand.

[Sea Pines 50]

i see that you hail from IL. you might want to use the 'advanced search' function (right underneath the search bar in the upper righthand portion of your screen, which you're probably familiar with already since you've been on the RSD forum, jenny...) to look for threads by a fellow poster from that state named beth. beth is extremely knowledgeable, carries (unfortunately!) both the TOS and the RSD dx's and she may very well be able to recommend a good TOS savvy neuro for you, or a PM doc.

either one will know the appropriate diagnostic tests to run in order to start the process of "ruling out" some of these other disorders you've mentioned. (in addition to reinterpreting the test results and surgical reports, etc., you've already got in hand, that is. no need to reinvent the wheel, if they are current enough!)

i would start there. maybe send beth a PM and ask her for a referral to a decent TOS doc in IL. but do NOT try to dx yourself, jenny. TOS is extremely difficult to dx. try not to be too hard on your doc(s) either, for that reason. it is not an orthopedic problem, for one thing... and like di says, most doctors go their entire practice in medicine without seeing a single case of TOS, let alone tx'ing one. and then there's the so-called medical "controversy" surrounding TOS and, to some extent RSD, for that matter. you've got to watch out for the 'non-believer' docs. they suck.

i will say, from what you've shared with us that TOS does sound like a distinct possibility. and i am very sorry to say that, believe me. whether the torn rotator cuff, impingement syndrome, cervical ridiculopathy, frozen shoulder, RSD, etc. are co-morbid dx's or misdiagnoses, of course i cannot say. we are none of us doctors here and we cannot give you medical advice.

just the benefit of our experience and some of that painful indeed. many of us come here having had unnecessary cervical spine fusions, carpal- and/or cubital-tunnel releases, etc. only to find TOS was the culprit all the while and that we now need tx for that monster. but it is also NOT uncommon for a TOS'er to suffer from what is known as double- or even triple-crush... or to have BOTH cervical syndrome and TOS. or be a double winner like beth and to have both TOS and RSD. and the hitz just keep right on comin'...

i'm sure you know to use the stickys up top to access links to medical literature, info re drs and PT's, etc., and the search bar to enter just about any key word you can think of re TOS to find old(er) threads and posts that way.

if a trip to denver is a possiblity for you, i would definitely recommend that. you could cut through a lot of nonsense by simply flying to what we refer to here as "TOS mecca" and grabbing a consult with any one of the 3 TOS specialists practicing in that fine city: annest, brantigan and sanders. or, hell, see all three of them while you're at it!

johannakat's recent thread entitled "how i chose my surgeon" (i'm NOT sugggesting you need more surgery, please don't get the wrong idea, jenny - i'm just pointing you to ms. smartypants' thread) is chocabloc full of info on the terrible trio in the mile-high city. it's up in the DR's and PT sticky or use the advanced search to find it...

i'm so sorry for what you've had to go through to-date to find some answers. speaking from personal experience i can sure relate to your story, as i'm sure a lot of us here can, jenny. if TOS is what has been causing your pain and other sx all this time, the fact that it has been aggravated by all of this frustration and getting the wrong type of medical tx based on inaccurate dx's is just so... well, unnecessary to my mind. i really, really hope that is something which will change in the near future as public awareness is raised. because we have enough to deal with just trying to get better! am i right? i'm right, aren't i? who's with me here?!?!?!?!

welcome home, jenny. pull up a chair. i have a feeling you've already earned your seat.

alison
"Be Brave"

[ihtos]

Welcome Jennyk,
You will find alot of great info from the folks here. My TOS started out with the pain in the back of my shoulders. Muscle spasms in my traps, and then my arm went numb. It's been numb for 18 months now.

I also get burning nerve pain with this. Sometimes its my forearm, or my ribs, or an area near my armpit. My pinky & ring finger are numb. I have tendonitis in both arms, shoulder impingement, and some cervical disc degeneration. Alot of these can mimic each other. Get all the tests you can, rule out everthing else. And by all means see a TOS specialist. Good Luck!! Ihtos

[hairdresser]

Hi Jenny; and welcome to the forum. This forum is filled with kind hearts, wisdom and knowledge.

[LinJane]

Hi JennySorry you are here but welcome.

DiMarieI'm sure others agree, but just looking at the picture of the guy with his arms over his head hurts me!! I watch tv shows or commericals and when people are doing certain movements I can't watch! Am I the only one?

Linda