Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Old 01-06-2008, 11:05 AM #1
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TOP 5 SYMPTOMS – New Symptoms In Bold Italics

1. Constant pain in R forearm, hand, shoulder, side of neck and shoulder blade.
HAND SIZE WENT FROM 8 TO 8 1/2 TO SIZE 11 IN RING SIZE.

2. Feeling of swelling in R arm, especially hand. Feeling of swelling in both hands, forearms, neck, cheeks, ears and ear areas, back of head, shoulders (all of this bilat, less when in bed propped with multiple pillows and more when any physical movement.

3. Tired. Extreme fatigue daily, requiring daily multiple naps, interspersed with nights of inability to sleep due to 8-10 pain, sleep is usually only several hours at most due to pain.

4. Inability to use R hand / arm normally. Right hand trembles, loss of use almost completely after initial exertion. Left hand has some use, but with extended exertion also loss of use.

5. Head aches, especially related to the neck muscles and behind the right eye. Headaches are still daily, disabling, and include several migraines per month, and include pain to the jaw, (bilat), behind the eyes, up the side of the face, and ears.
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Old 01-06-2008, 10:30 PM #2
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I suppose the Top 5 symptoms could be either the first 5 symptoms that you had, or the most troublesome 5, or the 5 that affect your life the most.

I'm thinking back to the beginning - mine started out as various RSI, neck & shoulder pains and injuries...symptoms moved around a lot so was very hard for Drs to pin a name on it.

1- loss of fine coordination in fingers and hands- sharp cramps in the back of hands with use, then extreme weakness and loss of use for a short time. could not even make fingers pick up a pin

2- extreme tightness and internal "buzzing" in forearm muscles, then became a deep ache, then some hypersensitivity

3- deep ache & burning pain across the C/T vertebra junction and into neck and shoulders

4- ulnar nerve symptoms in the elbow with numb pinkie & ring fingers and some hypersensitivity

5- One of the more unusual bunch of symptoms for me was the Vertebral Artery stuff and the triggerpoint referred pain stuff-

I'm listing all of them because they are so odd - I didn't tie them in with my RSI injury until I had read about TOS and saw this chart -
http://tos-syndrome.com/newpage12.htm
and this one
http://www.pressurepointer.com/pain_reference_chart.htm

the symptoms-
Vision changes {comes and goes}= Double/blurry, light sensitive, more floaters, very watery
Dizziness / lightheaded
Headaches at back of head
Memory/ brain fog
Concentration problems
Stuffy ears and sinus
Weak voice – cracks and scratchy throat
Trouble swallowing

these all fluctuated with the severity of my pain and other symptoms

Ok, I know I cheated by adding things together
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Old 01-06-2008, 10:40 PM #3
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here's our thread of full symptoms listed {at the time of posting}
http://neurotalk.psychcentral.com/showthread.php?t=5618
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Old 01-07-2008, 01:35 AM #4
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Yes, I saw that link, but Missa wanted some "tell-tale" signs or symptoms of TOS, and I remember we all did a rather long thread that listed our Top 5 symptoms. I think it gets confusing for newcomers to the site when we talk about more unusual symptoms, when they're still on first page so to speak...

I bet the Top 5 is on the other board.

Anyways, this gives Missa something to work with I think.
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Old 02-01-2008, 10:52 AM #5
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Bump for PRN request
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Old 02-01-2008, 10:53 AM #6
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TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS to rule these out, then you might have missed an obvious tumor, etc., but it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI. MS and other illnesses can mimic TOS and are somewhat easily ruled out.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or structural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages. Do not be surprised if these come out normal, but you might still have neurological TOS.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but most do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything – Dr. Togut explains that it is not the correct testing for TOS type nerve damage, but especially for work comp cases it is required. Many of us will have signs of carpal tunnel, elbow or shoulder damage. This does not mean you should rush to an orthopedic surgery however. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves IV and possibly cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it CTs? I always get this one wrong.) By Dr. Collins of UCLA shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $12,000 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors who say they know TOS can NOT diagnose TOS, and I went through over 10+ orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight. You should have a pain management doctor as part of your team. Usually these are anesthesiologists who have terminal or hospice care as their background. They are the ones who have the malpractice coverage to handle the opiate prescriptions, the expertise to do implant surgeries for pain, as well as trigger point, botox and other modalities for pain. Many of us are on the highest pain medications possible as the TOS pain for many can be unexpectedly high. These docs also treat RSD, fibromyalgia and other nerve damage that can stem from TOS.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. There is also the Sharon Butler system. You can get both via mail, for your own home use.

Try to stop using the computer and at any cost, PLEASE get voice software. Dragon naturally speaking is what I use. Just the pose at the computer, called “the gargoyle” pose, can trigger neurogenic TOS and RSD symptoms to flare.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, because if you look at how you spend your time, this is where / what you probably do the most if you are working full-time, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. And do NOT take anyone’s advice on this, ONLY an experienced, good, work comp attorney who has handled repetitive strain injuries to the upper body should be sought and the consult should absolutely cost nothing – FREE. No matter what, please get to an attorney to know your rights, and also, to know what you are RESPONSIBLE for also! There are time-sensitive forms, etc. You should get and keep a copy of every medical report and test result and give these to each new doctor that you see. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

Copyright 2003 - 2008
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Old 02-01-2008, 02:28 PM #7
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We need more Top 5 symptoms listed here too.

Will as many as possible add to this list?
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Old 04-22-2008, 05:57 PM #8
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Bump up for Tracey
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Old 04-23-2008, 02:49 PM #9
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hello!

the first 5 syptoms
i had (3 and a half years ago!) were:

deep aching pain in shoulder blade area (constant pain which made me cry!)

pains in hand (thumb joint would also seaze up and i couldnt move it!)

weakness in arm

weakness in neck (head felt too heavy!)



my worst 5 now (in no particular order as they all equally suck!) are:

extreme coldness in hand/shoulder down to elbow (very unpleasant and getting worse)

numb little finger (feels detached from the rest of me)

weakness in right arm (getting worse!)

pain across the right collar bone - hurts up towards my chin sometimes. (pec minor syndrome??)

crunchy-ness in neck!

xx
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Old 04-24-2008, 06:33 AM #10
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Top 5.. where do I begin.


Deep aching, horrible pain in arms from shoulders down to wrists to fingers
Neck pain, neck feels too weak to hold head up.Collarbones on fire and pain around front of throat up to bottom lip and up to ears. I used to describe the pain as if diggers where going up and down arms. Hands/fingers now won't staighten and little finger hurts alot.

Nausea

Sensation loss

Sleeplessness/lethargy/fatigue

Anything that requires arm/hand action...easily fatigued and increase in pain


I will stop there. My pain was initially helped a little by lying flat then only a little..now sadly I cannot lie flat due to Phrenic nerve issues but I do find myself trying to get lower to help pain. Sitting up is not nice.


Hello and best wishes to everyone.
Take care
Hx
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