|
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. |
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:D |
here's our thread of full symptoms listed {at the time of posting}
http://neurotalk.psychcentral.com/showthread.php?t=5618 |
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. |
Bump for PRN request
|
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 |
We need more Top 5 symptoms listed here too.
Will as many as possible add to this list? |
Bump up for Tracey
|
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 |
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 |
Bumped and for updates.
If anyone wants to do an update on any symptoms please do so. |
Quote:
ouch Laura:eek: |
I guess my top 5 are back with a vengeance.
Pain and numbness in right hand. Epsecially between ring and pinky fingers. Tingling, numbness in right forearm. Burning Pain. Tired, heavy, weak, feeling in upper right arm. This is combined with an intense aching pain. Trouble reaching and coordination with right arm. Things started getting weird several days ago. Have had pain and discomfort post rib resection of 2 years ago. Basically dealt with it by ignoring it. The last couple weeks I've been getting intense headaches like I've never had before. These were at the base of my neck and head. Started having extreme tightness and shoulder pain and back around the shoulder blade about a week ago. Now the last few days I've been having random twitching of my middle finger on my right hand. Never had the headaches or twitching before. |
update on my symptoms:
Ok so 4 and a half years in and things have changed a lot for me (poss due to change of jobs - left office job which aggravated tos more).....or just due to length of time suffering with this for - i understand things can change overtime anyway! Crampy/sharp pains in the innerforearm dull pain at base of skull very bad headaches - mostly over left eye little finger shakes and swells slightly - changes colour, purple cold hand sensitivity to the wrist on the front of hand - sometimes have sensation that there is something on front of wrist when there isnt pain in shoulder blade becoming less of a feature recently rest of my back seems to be getting worn down by years of this - not sure what state i'll be in 10+ years..... botox helping - lots of the symptoms simmered down - slowly came back after 3-4 months post botox - 2nd round of botox next week. |
See, this is how I KNOW that neuro TOS exists, because our Top 5 (or more) are the same, and the causation seems to be the same.
This site is so helpful to share this information, and we've done this, no doctors have done this for us. The Net medical sites have changed substantially since I first got TOS in 2002. Neuro TOS is growing, growing, growing...and our information is being read and included in their conclusions. |
Bump up for new folks. Love to all.
|
hi all im new to forum my name is cindy
my symtoms are pain in arms , shoulders ,hands , neck holding arms out or above my head [they get heavy fast] weakness/fatigue with light uses in arms , hands burning sensations in arms, hands, neck spasms [ feels like hands n arms are locking up ] swelling in arm muscles after doing very very little lose my breath when putting arms above my head crackling ,crunching, snapping noises in neck chronic sinuse n ear stuffiness/infection one side only ring/pinky finger sometime thumb get a painfull pulling sensation all of the above mentioned things happen when brushing/washing hair ,showering , brushing teeth , cooking , holding a cup a coffee or plate , putting a jacket on , writing , sometimes just sitting wrong , reaching + more i have also been told i have radiculopathy and i had neck surgey in 2008 on c 5-6 because of a chronic large osteophyte n hurniation with nerve root compression, my surgery did nothing to help symtoms |
Hi Cindybells,
I made a copy of your post and placed it in a new thread so others can say Hello :) follow this link to it- http://neurotalk.psychcentral.com/sh...d.php?t=122902 Your symptoms sound very familiar...:grouphug: |
bump up for new readers
|
Quote:
|
For me it was the muscle tightness and then the spasms caused pulling on my c spine vertebra - that caused the vertebral artery symptoms.
a chart about it on this page- http://www.tos-syndrome.com/old1/newpage12.htm |
my top 5..
1-nerve pull sensation at base of neck where cervical rib is
2-ache/pain down arms 3-ache/pain up neck into ear & jaw 4-stabbing pain in shoulderblades 5-restricted ability to move arms overhead |
Quote:
|
nausea is a weird one
i didnt experience that until this weekend but ti was bad |
I guess I'll give it a whirl:
1) constant burning pain in shoulder 2) pain when holding arms out or up. hand cramps up (claw) when lifting arm over head. 3) stabbing pain in shoulder blade 4) general pain all over my shoulder and upper arm 5) slowness or loss of dexterity in right hand, feeling of swelling in hand. only five? I could go on and on... :) |
O boy this sounds fermilyour
|
Quote:
|
Quote:
|
TOS is a dx of elimination. I was told there is no "tell tale sx" specific to just TOS. That's why it's so hard to get dx'd.
Yesterday some idiot neurologist told me that TOS doesn't cause PAIN!!!!! :rolleyes: I told that it does cause pain and there are alot of us with TOS who know this to be true. I'm so tired of "doctors" who think they are God and who don't have the knowledge they think they have. |
TOS causes pain so high that some of us have considered suicide. We talk to eachother and comfort eachother because some of the neuros are nuts. I was in a hospital for TIA watch and the neuro put her dirt shoes on my bed, shook it as I screamed, and told me, "well, the only thing you can do is go to Germany and get a Ketamine "wash" of my spine.
There are TOSers here who can tell you whether Germany was worth the cost!!! Watch your blood sugar. NOW i am on oxygen, as my blood oxygen during the night dropped dangerously low. The injury is the most painful and misunderstood condition, and the CDC doesn't even have a head count! ONE BLESSING, it is cyclical, and if you get to know what works for you, and what doesn't, you can keep trying. Get a work com attorney and ask your doctor for home health aide. I thought I was going to die a month ago, and my nurses helped me back to life. Bless you all. |
Quote:
|
My top 5
1. Left hand pain/weakness
2. left shoulder/scapula pain 3. ringing ear 4. left sided infections of head, breast 5. chronic neck pain |
Ringing ear
Quote:
I also have ringing ear. Very odd symptom an no doc woul believe it to be tos related. Take care Isa |
Main symptoms
New to the site. Sorry in advance for misspellings or bold letters. Me and typing don't mix anymore.
I have had problems with raising arms since 1991 but only recently (5y ago) I started going to the doctor for bilateral hand pain. So these are my top 5 per say: Hand pain - the more I use them the more they hurt. arm pain - not as often as hand pain and does not last as long as hand pain. neck pain - back of neck will hurt, tingle sometimes. headaches - at least 2 migraines a month. Thanks for letting me post! |
As far as I know, symptoms are different for everyone. There is no definitive test that can say you have TOS and no definitive "symptom" either.
For me: 5. numb pinkies / half of ring finger 4. pressure/pain in forearms and inner side of elbow 3. immediate loss of blood flow when arms are bent or overhead 2. extreme nerve screaming in entire arms (i work real hard to avoid this) 1. finding oneself, without even thinking about it anymore, avoiding most activities in life |
Quote:
|
TOS caused after trauma - fell on my face from back of motorbike @30 mph.
Poor posture from earlier must have been a factor as well. 1. Right side upper back/trap burning pain extending down to shoulder blade, becomes unbearable (8/10) 2. Burning pain & numbness in both hands (6/10) also vibrating spasms near wrists (tap my wrists & its like an electric shock) 3. Pain in arms/ and inner side of arms beside elbows as if muscle spasm (5/10) 4. Chest pain on left side near the armpit and besides it on the front (6/10) 5. Headaches/migraine style when sitting in bad posture (8-9/10) 6. Numbness & pain in feet/ vibratory sensations in both legs (left worse than right) 10 - being the max in terms of pain. |
| All times are GMT -5. The time now is 07:18 PM. |
Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise v2.7.1 (Lite) -
vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.