[Dena]

Hello All

I am very new here, and to TOS as well. I am not yet diagnosed. I would like to tell my story, because I am scared and feeling very alone right now. IF you'd like to read it, I welcome comments, opinions, suggestions and your experience.

Here goes...

Years ago I was a high school cheerleader and pom-pom girl...this was 1990 so picture big bangs, frosted lipstick and jelly bracelets.

I was performing a routine to the classic tune of "Can't Touch This" by MC Hammer when one of my bitchin' moves knocks my arm out of socket. That is the kind of injury that you can't help from just poppin it right back in. I kept cheering cuz we were winning, I was co-captain after all.

Fast forward to the turning of a new millenium. The whole family gets in a 45mph car accident....our Tahoe versus the 1997 Nissan Sentra. I had moderate neck and shoulder pain for 10 days after that.

Between 2000 and 2007, I had what I call "episodes" of shoulder and neck pain. Sometimes, I'd sleep wrong and my hand and/or arm would be numb upon waking. These episodes typically lasted a week to ten days, with moderate pain until I went to the Chiropractor. His adjustments helped tons. So much so, that I never went to him for his recommended follow-ups. I only took the time to go to him when the pain got bad. He consistantly suggested that I make weekly (or more) visits to correct the issue with my neck and posture.

Now comes the divorce. My husband of 12 years leaves, all kinds of bad things happen to my family; financially, emotionally and otherwise. Before the demise of my marriage I was self-employed, able to contribute to the finances of our upper middle class suburban home in various sales jobs and MLM success.

After he left, not only was I depressed, but my three children and I were completely destitute. In a matter of 6 months, we lost the house, the car, and our dignity.

After trying car sales and making no money (can anyone say recession?), just over two months ago I took a job as a waitress working third shift (9pm to 7am) at a diner style restaurant called Steak-n-Shake. That's when things went from bad to great to worse.

The "great" was that I loved the job. I loved interacting with people, helping them and being a good waitress. I took pride in my work, cleaning and stocking and waiting on people, repetitive motions on that shoulder and neck. I made pretty DAMN good money too. Not rich-type money, but a decent take home to survive. Then the numbness started.

The "worse" was that after about a week of serving glass after glass of tea, cokes, coffee, shakes, chili, burgers, etc...I started to frequently awake with the fingers in my left hand tingling painfully and "asleep". I figured I was sleeping on my bad left shoulder and tried to ignore it. Another month into it, I was taking as many hours as I could, working 10 days in a row frequently. The money was needed and earned doing something I loved, but the numbness was creeping up my left arm, and sometimes woke me in the night.

Now, for the past five days...I wake up, and my whole left arm is numb, except for the burning pain in my inside forearm. From time to time, the right hand has numb fingers as well, but never as bad as my left.

So I Google "numb fingers pain" and wind up on some forum (don't remember which) where a poster suggests TOS to an inquiring mind. I look it up, and read the smptoms, my jaw dropping. The poster was supposedly a doctor at one of those "ask a doctor" sites and he recommends that I list my symptoms to ensure a proper diagnosis. So I have. I've listed them below because I want to know if my symptoms are similar to what you all feel...and how on earth we are supposed to deal with the pain (exercise? I really hate exercising). Again, your comments are welcome.

• Extreme Pain and severe numbness in L arm when laying down
• Whole arm aches with activity (like typing, serving, etc)
• Left shoulder frequently cracks
• Left shoulder markedly lower than right one
• Consistant pain localizes more intensly at the wrist, elbow, shoulders and finger joints (in that order)
• Entire hand, wrist and arm ache and are numb up to the elbow. SEVERE pain in the inner forearm, makes me cry sometimes
• Mild to moderate upper back/lower neck pain
• Weakness and shaking when handling even very light items
• Continual swollen feeling to the left fingers
• Compensating by slouching and over using right arm/hand

What I have tried (five days into the extreme pain):

• Heating Pad (helps)
• Posture (don't know if it helps yet)
• Muscle Rub (feels good, very short term)
• sleeping sitting upright
• trying to stand and sit with a better posture

800mg Ibuprofen (barely touches it)

MRI Results:

• C Spine: No Nerve Impingment
• Shoulder: Tendonitis (Supraspinatus Tendon)

Thanks for reading. Glad to meet all of you,

Dena

[Dena]

btw, my first othopedic consult is tomorrow morning. wish me luck

[Jomar]

Hello Dena,
I copied your intro to a new thread here- so we can all say " HELLO".
Sometimes we forget to look in the intro thread

I'll reply more later but wanted to get this posted for you.

Here's a post of saved info-a symptoms thread at the bottom
http://neurotalk.psychcentral.com/post87845-21.html

[kellysf]

Welcome, Dena.

Sure sounds TOSy. Sometimes orthopedics don't go in for TOS much. At least you'll have some info, though.

You're a great writer. I can see Holly Hunter playing you in the movie.

Kelly

[billy027]

Hi Dena,

I'm new to this board but it is a great place for advice and help.

I am thankful for it. You can get many good Dr. recommendations here also.

Bill

[finz]

Hey Dena.........welcome to the club !

Even "knowing" my dx of TOS from a worker's comp doctor, I went through 2 NP's and 7 MD's before I found someone who understood TOS.

I hope your ortho guy is one of the ones with a clue. If not, check the MD list at the top of the forum. It is worth traveling to find a doc who understands TOS.

It definitely sounds like something is crimping that nerve.....the question is....where is the compression ? At the spine ? I know your MRI shows no impingement, but so does mine in a neutral position. It's when I turn to the left that my arthritic vertabrae rubs the nerve. Is yours in the brachial plexus ? You need a specific MRI of the BP to check this. Or is yours at your shoulder ?

I'm not suggesting that you should know those answers....thats what we need your docs to figure out.

Have they x-rayed to see if a cervical rib is aggravating the situation ? Poor posture, being overweight and/or large chested, and of course, those repetetive motions can all predispose us to TOS

Best of luck getting a correct dx and finding a treatment that works for you.

[Dena]

Originally Posted by finz

Hey Dena.........welcome to the club !

Even "knowing" my dx of TOS from a worker's comp doctor, I went through 2 NP's and 7 MD's before I found someone who understood TOS.

I hope your ortho guy is one of the ones with a clue. If not, check the MD list at the top of the forum. It is worth traveling to find a doc who understands TOS.

It definitely sounds like something is crimping that nerve.....the question is....where is the compression ? At the spine ? I know your MRI shows no impingement, but so does mine in a neutral position. It's when I turn to the left that my arthritic vertabrae rubs the nerve. Is yours in the brachial plexus ? You need a specific MRI of the BP to check this. Or is yours at your shoulder ?

I'm not suggesting that you should know those answers....thats what we need your docs to figure out.

Have they x-rayed to see if a cervical rib is aggravating the situation ? Poor posture, being overweight and/or large chested, and of course, those repetetive motions can all predispose us to TOS

Best of luck getting a correct dx and finding a treatment that works for you.

Thanks for the welcome to all who responded.

I told my boyfriend about the forum and what I read about the difficulty for some to get taken seriously, properly diagnosed, treated...and to me (at the moment) able to help with the horrific pain. He suggested I stop reading, lol, he felt like I was setting myself up for it in a "you get what you expect" way. After all, we don't even know it is TOS.
Last night was the worst night yet. So I cant type for long. I want to answer finz's questions, and when I get back from the ortho today, I will try to fill everyone in.

You need a specific MRI of the BP to check this. Or is yours at your shoulder ?

I'm not sure, but will request that the ortho consider another MRI. The onset of symptoms was focused at the "ball socket" of my shoulder. I agree about the pinch being position related, since the pain/numbness definately is increased or decreased depending on my position. I had no symptoms at all during mr MRI, so however I was laying must have been just right to release the nerve. Funny, I kept trying to duplicate my MRI position as I attempted sleep last night, lol.

Have they x-rayed to see if a cervical rib is aggravating the situation ?

No, I will also mention this to the ortho today. I suppose I should read a little more about the relation relation between this rib and our symptoms. I guess I assumed my ribs were fine.

Poor posture, being overweight and/or large chested, and of course, those repetetive motions can all predispose us to TOS

I am ALL of these.

Any suggestions for pain relief? Last night I cried myself to very fitful sleep.

[Dena]

Or so says the Orthopedic doc who spent literally 3 minutes in the exam room, and wasnt even aware of the neck MRI I had.
He states that TOS causes pain in only one position. That if I am having pain in multiple positions, it CAN NOT be TOS. I don't wanna come across like I think I am smarter than this doctor, but c'mon, he didn't take even 10 minutes to listen, read my list of symptoms ro review both MRI's I had done yesterday. Am I supposed to believe he knows diddly squat about TOS? I very well might NOT have TOS....but I would have felt a lot more confident in his statement ruling it out, if he'd at least done the very basics of his job.

He wrote me a prescription for Medrol (prednisone...doc said cortisone?) and I had to BEG him for some sort of pain relief. I began to cry out of frustration and the fear of the pain to come.

He gave me Darvocet.

(Last night, I took one of my friend's Percocets and it barely touched the pain.) I am so scared to try to sleep tonight.
He also referred me for an EMG and NCS.
Hurting now, have to go. ty for listening.

[DDayMBB]

Dena... I am not a doctor, howevr been through quite a few exams and around the block a few times and unfortunately sounds dam close to the TOS monster! Here are a few things to read over....

What are the signs and symptoms of thoracic outlet syndrome?

It is important to understand that presenting with the symptoms listed below in no way indicates a definitive diagnosis for thoracic outlet syndrome. Professionals understand the importance of coupling diagnostic testing skills with the patient’s report of what hurts and what doesn’t seem to be working properly. Don’t self diagnose! Neurologic and vascular symptoms can be indicative of more serious conditions.
Vascular symptoms include:

1. Swelling or puffiness in the arm or hand
2. Bluish discoloration of the hand
3. Feeling of heaviness in the arm or hand
4. Pulsating lump above the clavicle
5. Deep, boring toothache-like pain in the neck and shoulder region which seems to increase at night
6. Easily fatigued arms and hands
7. Superficial vein distention in the hand

Neurologic Symptomsinclude:

1. Parasthesia along the inside forearm and the palm (C8, T1 dermatome)
2. Muscle weakness and atrophy of the gripping muscles (long finger flexors) and small muscles of the hand (thenar and intrinsics)
3. Difficulty with fine motor tasks of the hand
4. Cramps of the muscles on the inner forearm (long finger flexors)
5. Pain in the arm and hand
6. Tingling and numbness in the neck, shoulder region, arm and hand

The following is written by Dr. Sanders in Colorado, he is among one of many **EXPERT** specialists in the field of treating individuals with the beast TOS
Definition
Thoracic Outlet Syndrome (TOS) is pain, numbness, tingling, and/or weakness in the arm and hand due to pressure against the nerves or blood vessels that supply the arm. It is due to tight muscles, ligaments, bands, or bony abnormalities in the thoracic outlet area of the body, which lies just behind the collar bone. Pressure on the nerves is the problem more than 95% of the time, but occasionally the artery or vein is involved.
Common Symptoms
The most frequent complaints are numbness and tingling in the fingers; pain in the neck, shoulder, and arm; headaches in the back of the head; weakness of the arm and dropping things from the hand; worsening of the symptoms when elevating the arm to do such things as comb or blow dry one's hair or drive a car; and coldness and color changes in the hand. The symptoms are often worse at night or when using the arm for work or other activities. During the year 2005, we have become aware of a large number of patients who, in addition to these symptoms, also have pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade. Until recently it was thought that these later symptoms were also due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome.
Cause
TOS is most often produced by hyperextension neck injuries. Auto accidents that cause whiplash injuries, and repetitive stress in the workplace, are the two most common causes. Some of the occupations that we see causing TOS include, working on assembly lines, keyboards, or 10-key pads, as well as filing or stocking shelves overhead. In some people, symptoms develop spontaneously, without an obvious cause. An extra rib in the neck occurs in less than 1% of the population. People born with this rib, called a "cervical rib", are 10 times more likely to develop symptoms of TOS than other people. However, even in men and women with cervical ribs, it usually requires some type of neck injury to bring on the symptoms. Pectoralis minor syndrome appears in more than half of the patients who have TOS. It results from the same type of injuries that cause TOS.
Diagnosis
Physical examination is most helpful. Common findings are tenderness over the scalene muscles, located about one inch to the side of the wind pipe. Pressure on this spot causes pain or tingling down the arm. Rotating or tilting the head to one side causes pain in the opposite shoulder or arm. Elevating the arms in the "stick-em-up" position reproduces the symptoms of pain, numbness, and tingling in the arm and hand. There is often reduced sensation to very light touch in the involved hand (this can only be detected in people with involvement on one side).
In addition to these findings on physical examination of patients with TOS , patients with pectoralis minor syndrome have tenderness just below the collar bone about an inch or two inside the shoulder (biceps tendon). Pressure on this spot often causes pain and tingling down the arm.
Diagnostic tests, such as EMG's or NCV's, may show non-specific abnormalities, but in most people with TOS, these tests are normal. However, during 2005 we found a new nerve test which has been abnormal in the large majority of TOS and pectoralis minor syndrome patients. This test can be considered a variation of EMG/NCV measurements. It is a determination of the medial antebrachial cutaneous nerve (abbreviated MAC). It is one of the few objective tests that can support the diagnosis. We have completed a paper describing our experiences with this test in 41 patients and have submitted it to a medical journal for publication.
Neck or chest x-rays may show a cervical rib. Loss of the pulse at the wrist when elevating the arm or when turning the neck to the side (Adson's sign), has been thought by some to be an important diagnostic sign. However, we find it unreliable because many normal people also lose their pulse in the same positions, and the majority of people with TOS do not lose their pulse in these positions. Shrinkage of hand muscles (atrophy) occurs in about 1% of people with TOS, and these people will have nerve tests that show a typical pattern of ulnar nerve damage.
Other diagnostic tests that are helpful are a scalene muscle block for TOS and a pectoralis minor muscle block for the pectoralis minor syndrome. These are simple office tests that involve a 15 second injection of xylocaine into the anterior scalene or pectoralis minor muscle. The tests give strong support to the correct diagnosis if within a minute or two of the injection there is good relief of symptoms and improvement in physical exam findings.
Disease Process
Microscopic examination of scalene muscles from the necks of people with TOS demonstrates scar tissue throughout the muscle. Presumably, this was caused by a neck injury stretching these muscle fibers. The tight muscles then press against the nerves to the arm (brachial plexus) producing the hand and arm symptoms. Neck pain and headaches in the back of the head may be caused by the tightness in these muscles but also can be the result of stretching muscles and ligaments along the cervical spine of the neck in cases of whiplash injury.
Treatment
Physical Therapy
Treatment begins with physical therapy and neck stretching exercises. Abdominal breathing, posture correction, and nerve glides, carried out on a daily basis, are a part of the therapy program. Gentle, slow movements and exercises are stressed. Methods like Feldenkrais have helped many people with TOS. Modalities to avoid are those that emphasize strengthening exercises, heavy weights, and painful stretching. It is important to be examined and tested for other causes of these symptoms because other conditions can coexist with TOS, and these should be identified and treated separately. Some of these associated conditions include carpal tunnel syndrome, ulnar nerve entrapment at the elbow, shoulder tendinitis and impingement syndrome, fibromyalgia of the shoulder and neck muscles, and cervical disc disease. Surgery can be performed for TOS, but it should be regarded as a last resort. Non-surgical forms of treatment should always be tried first.
Surgical Treatment
Surgery for TOSis designed to take pressure off the nerves to the arm. This can be achieved by removing the muscles that surround the nerves (scalene muscles), by removing the first rib, or by doing both (removing muscles and first rib). Over the past 30 years we have employed each of these 3 operations in a quest for the safest and most effective procedure. All 3 procedures (transaxillary first rib resection, scalenectomy, and combined rib resection and scalenectomy) have limitations; there is no perfect operation. When we analyzed our results for the 1990's, it was observed that the failure rate for scalenectomy with rib resection or without rib resection was the same. This has led us to use scalenectomy without rib resection as our operation of choice. However, when during the operation we observe the nerves to the arm being pressed by the first rib, we will remove the rib during that operation. In the year 2004, during which time over 100 operations were performed, the first rib was removed in 7 patients.
Recurrent symptoms of pain, numbness and tingling is most often the result of scar tissue formation during the healing period. This occurs regardless of which operation is performed. Between in 2002 and 2004, we used a material like Saran wrap to cover the nerves to the arm to reduce scar tissue adhering to the nerves after surgery in 250 operations. This material was totally absorbed in the body in 4 weeks so there was no foreign body remaining. When we analyzed the results with this material, we found that although it did reduce the amount of scar tissue making reoperations for recurrence easier, it did not significantly reduce the incidence of recurrent symptoms. Therefore, beginning in 2005, we changed the material to a similar one that now stayed in the body for several months rather than just 4 weeks. We have now used this newer material in some 100 patients and are seeing fewer recurrences to date.
In 2005 we became acquainted with a condition that was described 60 years ago but which most of us had ignored, the pectoralis minor syndrome (described above under "cause" and "diagnosis"). Each patient we now see for TOS is also examined for this. We have been surprised to find that at least half the people who have TOS also have complaints and positive physical exam findings of pectoralis minor syndrome. If following a pectoralis minor block there is significant improvement within a few minutes, we have been performing a very simple operation called pectoralis minor tenotomy. This operation is performed through a 3 inch incision in the arm pit. The pectoralis minor muscle is easily found and cut at its attachment to the shoulder blade (at the coracoid process). One inch of the muscle is then removed to prevent it's reattachment to the top of the nerves going to the arm. The incision is closed with buried stitches. The operation usually takes less than 30 minutes and can be performed as an outpatient and recently we have found that this procedure can be performed under local anesthesia, but with an anesthesiologist in attendance so that patients are asleep for a short time but are awake within a few minutes of the end of the operation. The procedure carries almost no risk of injury.
In 2005 and 2006, we performed 130 pectoralis minor tenotomies as the only operation. 60 of these were performed in patients who previously had been operated upon by scalenectomy or first rib resection. They had experienced partial improvement in their symptoms from their operation but continued to complain of pain in the chest and pain over the shoulder blade.
Separately, 70 pectoralis tenotomies have been performed on patients who had not been operated upon previously. They had been seen because it was thought they had TOS. On exam, most of them did indeed have TOS, but also had findings of pectoralis minor syndrome. When their symptoms and findings on physical exam were dramatically improved by a pectoralis minor block, they were offered the simple operation of pectoralis minor tenotomy with the understanding that if they did not experience good relief of their symptoms they could return for the bigger operation of scalenectomy or first rib resection. To date, 6 patients have returned and received scalenectomies. The other 64 have had enough improvement that consideration of additional surgery has not been necessary.
Results of Treatment
Most people with TOS will improve with stretching and physical therapy. In our experience with over 5000 people with TOS, less than 30% had surgery. The improvement rate with surgery varies with the cause of the TOS. Auto injuries have a success rate of about 80% while repetitive stress at work has a success rate of 65-70%. Pectoralis minor tenotomy has only been performed for the past two years. The success rate to date is over 80%.
For more Information
More information regarding TOS is available in the book: THORACIC OUTLET SYNDROME: A COMMON SEQUELA OF NECK INJURIES. Written by Richard J. Sanders, M.D. and Craig E. Haug, M.D., the book was first published by J.B. Lippincott Co., Philadelphia, in 1991. Lippincott elected not to reprint the book when it sold out its first printing. However, the publisher has given permission to the author to reprint the book and it is now available by phoning his office, toll free, 1 888 756 6222. If you would like to discuss your TOS problem, feel free to call the author, Dr. Richard Sanders, M.D., in Denver at 303 388-6461, or call toll free, 1-888-756-6222.
Dr. Sanders is Board certified in both General Surgery and Vascular Surgery. In addition to his book on TOS, he has authored several articles in medical journals and many chapters in surgical textbooks on the subject of TOS. He has been treating patients with TOS for over 30 years. During this time he has seen over 5000 patients with TOS and performed over 2000 operations for this condition.
Last updated: April 2007

[Jomar]

that dr missed the boat I think-
there is no way they can tell without doing at the very least some positional /provocative testing as well as the pulse testing.
That dr does not know a thing, even less than my dr did!
at least she did a half hearted pulse check in one arm...
I wouldn't waste any time going back to that one.

Your best bet, if you don't have access to one on our dr list, is to do some searching and calling around in your area to find qualified/experts in assessment of possible myofascial or musculoskeletal injuries.
Sometimes PT places have a good idea of which drs that specialize in certain things and can give names.
Even an advanced PT or knowledgeable chiropractor might be of help with dx or tx.

this is interesting- Ultrasound Imaging of the Musculoskeletal System
http://www.radiologyinfo.org/en/info...sculous&bhcp=1

good medical based TOS info sites -
TOS info:
http://www.medifocushealth.com/RT017/index.php
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.doctorellis.com
http://www.cwce.com/feinbergarticles/tos.htm
http://www.tellmeabouttos.com
http://www.vascularinstitute.com/Resource_TOS.htm
http://drbrantigan.com/about/index.htm
http://www.ecentral.com/members/rsanders/
http://www.causeof.org/posture_tos.htm
http://intraspec.ca/tos.php

the bolded one has photos of the basic minimum testing positions
my DC & 2 adv PTs did all of these and more {tested for any C spine causes/ involvement}- none of my drs did except the one that did the single arm check.