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New and questions about TOS, thanks.
Hello to all,
I’m here for info on Thoracic Outlet and I hope to get some feedback from those with personal experiences. I understand nobody can diagnose me over the internet, but I am VERY interested to see if my symptoms “closely relate”. I am a 36yo male, slender and tall with what some say is a droopy shoulder posture. I have been a runner for many years. I have had symptoms of numbness to the right small and ring finger, on and off for a year. It is seemingly positional such as sitting position and most aggravated by sitting at the computer utilizing a mouse. About 3-4 months ago the pain started to go up my arm, affecting the wrist and causing pain along with wrist “weakness” per say. I started with a strong pain in the upper forearm closely resembling tennis elbow. I suspected radial nerve issue or ulnar nerve entrapment. A few times particular I was riding the motorcycle on a long day trip (cruiser/touring style) when the pain became significant and all the way up my right arm in the triceps, into my shoulder, clavicle and right side of my neck. The pain seemed deep though, located right above my clavicle, under the neck muscle. This lasted for days on end after that long ride. My arm felt heavy and the pain was constant. This sent me to a Chiro for relief of right sided neck, shoulder, and arm pain. He cracked me twice, a few days apart from each other. I got very little relief and in fact on the second time I walked out of the there with a new pain to the left neck and a few days later began to experience heaviness to the left arm. Since then (3 months now) I have developed numbness, aches, and cramps to my left hand and fingers causing dexterity issues and “perceived weakness”. All the while the right arm continued with positional pain, numbness, and aches as well. I quit riding the motorcycle and stopped all upper arm exercises and the shoulder pain subsided, but the hand and wrist symptoms continue. The arm heaviness is there at times. The finger numbness comes and goes and can be exacerbated with certain shoulder stretching. What gets me the most is the left hand wrist and fingers that ache at times and feel “stiff” or a loss of dexterity per say. Others say I have no loss of strength. I have had a neck CT scan, MRIs of; Brain, Cervcial, Thoracic, Lumbar spine, all with contrast. EMG/NCV studies to all four limbs, blood work to include Lyme and other “stuff”. All the diagnostics are negative. No nerve entrapment etc. I was told I could take anti-depressant medication and see if this would help. I don’t feel I need that. I’m anxious because I cannot find a reason for my symptoms. I have started with a different Chiro and also one session of PT with someone who specializes in sports and active release. The session was ok, not awesome, but I will continue. Does this sound similar to TOS? Hand, wrist, finger numbness with aches and dexterity feelings? Pain up the arm and into my shoulder and right neck at times, almost feeling like it’s under my clavicle? Feeling like I have a pinched nerve, yet studies are normal? This is frustrating. Thanks to those who will respond. |
Sounds quite familiar..
Have you found our sticky threads yet, they are a good place to get a crash course on TOS and therapies. Stickies are at the upper section of the main TOS forum page - http://neurotalk.psychcentral.com/forum24.html Post #1 in this sticky (Our Useful Links - Websites, Articles & Polls) is a large collection of info links- great place to start.. On chiro & PTs - IMO - If they don't do a comprehensive assessment of muscles as well as bones and posture, or don't seem to listen carefully to what you are describing, I think I would excuse myself and leave that place.. If a chiro only wants to do a few adjustments only, with no muscle work I'd avoid those too. Often we need a well rounded treatment plan for muscles & alignment.. Here are some basic things you can try at home- http://neurotalk.psychcentral.com/album.php?albumid=422 |
Thank you for the reply. I am reading through the stickies now. Yes, the PT was very thorough and spent 45min with me, also doing muscle work and teaching various stretching for home exercises before returning again.
This whole thing is frustrating! Primarily because I feel I'm being looked at like I'm crazy because all my testing was "normal". Thus, I have no organic cause for my symptoms. I was banking on a carpal or ulnar nerve entrapment as a solid diagnosis, but no. Glad to read through these posts and see others out there... |
Hello and welcome! Your story is almost identical to mine. I had the exact same evolution, first hand, wrist pain, then it spread to the shoulder and left arm. I can also describe that tight sensation on the arms like a sweater with tight sleeves that was making me immobile and awkward.
Because I didn't know about TOS I went trough an unnecessary wrist surgery that obviously did not fix anything, got tested for MS and anything else under the sun. I would recommend that you see a TOS specialist, there is no point in wasting more time and money on unnecessary treatment/opinions. Can you tell which city you live in so that we can make a recommendation for a specialist? I have already had surgeries on both sides and recovering. |
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it looks like Dr Donahue in Boston is your best bet? Will research further and let you know
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Dr Robert Thompson
1 Barnes Jewish Hospital Plaza St Louis, MO 63110 http://surgerydept.wustl.edu/TOS_Meet_Staff.aspx I thought there was someone in Maryland ? and another in one of the southern states.. http://neurotalk.psychcentral.com/thread135.html What is your avg daily pain level? 0 none --10 + passing out from pain 5-6 interferes with sleep.. Have you had any sports injuries, hit,s falls or car accidents in the past? What type or work do you do desk work, repetitive, lifting /reaching or static postures? |
Hi Bobby,
You should like you fit in just fine...sadly. :grouphug: I wish I could say no, but you sound awful familiar. It does make you feel crazy when you *KNOW* something is wrong and all the tests come back normal. Jo mar has given you good advice. I agree with Nelly, find a specialist. Don't waste time with the "I don't know" and "that's odd" routine that the regular Drs give you. And to their defense TOS isn't typical. We are special...lol For me, it has taken a year of struggling to finally get to a Dr who acknowledges there is a problem and not just me inventing off the wall symptoms to get out of work. I honestly feel lucky that it hasn't taken longer. Some folks end up having multiple surgeries that don't do anything positive. Or they spend years in PT and go through a herd doctors before they find an answer. I wish you luck. Keep us updated. Daesin |
Donald L. Akers Jr., MD, FACS
Premier Surgical Associates 7557 Dannaher Way Suite 110 Powell, TN 37849 865) 938-8121 (Office) antikamars post- http://neurotalk.psychcentral.com/post912733-66.html |
Thanks to everyone so far for the responses. If I fit in, then so be it. I'm on the road to PT and anything else I can do to help remedy this. Yes, like most others I've gone through the brain racking of "what is this"? Most notably is the fact I've been unable to pinpoint this to a mononeuropathy like carpal tunnel, yet the right arm seemed to affect multiple nerves with pain all the way up to my clavicle and neck. So frustrating, but...I'm glad to finally hear from folks who are telling me they understand.
The pain comes and goes. I tend to suck it up and continue with stretches etc. I'm not too sure about the 1-10 pain scale. I've had worse pain maybe?? But nothing nagging like this, and never without an etiology. |
Don't get too gung ho on the stretches without talking to your Dr or PT.
PT for TOS is very specific. My PT does not want me to go into pain...just up to it. I have learned, and am reminded everyday that going past the line will kick you in the teeth. I swear sometimes the line moves! Talk to the PT about TOS...they can run some physical movement tests to get a better idea if this is the issue. Good Luck! |
Hi Bobby78,
my symptoms are quite similar to yours: shoulder/neck/arm/wrist pain, on and off weakness and loss of dexterity, finger numbness which gets worse with shoulder stretching etc. Like you, I have no diagnosis and all tests came back negative. I have seen more doctors than ever in my life, but none of them sees anything wrong. They all claim there is no loss of strength, even when I can barely hold a toothbrush. Had to give up running, riding bicycle, exercising, driving (except for appointments), reading and many other things. I think you found the right forum. Things I tried which did not help: medications, acupuncture, trigger point massage and active release, trigger point injections, strengthening and posture exercises, aggressive stretching. Things which are helping: gentle stretching, relaxation, breathing exercises. Staying away from computer and avoiding stress helps a lot too. |
After combing through the threads, this is making me a "Danny downer". There doesn't seem to be many positive outcomes, yet websites continually state PT will produce and great success and this is usually all that is needed.
I finished PT this morning (2nd visit) and can say I had some relief for a few hours only. Like Hiker mentioned, I get the right side pinky and ring finger numbness with positional stretching. The left hand has a stiffness to the pinky and ring finger, with on and off dull ache up the arm to the triceps area. Again, this all started on the right, strikingly worse with sitting at the computer or riding the motorcycle in a "static" position for hours. Now I can't even fathom riding and this is affecting me mentally. Does this get better with PT, anyone??? The surgery sounds a bit awful with heavy risks. I'll admit, I'm quite frustrated and saddened right now. |
...and by strikingly worse I mean pain all the way up my right arm into the right side of my neck and deep into the clavicular region.
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[Have you had any sports injuries, hit,s falls or car accidents in the past?
What type or work do you do desk work, repetitive, lifting /reaching or static postures? ] You might have missed these questions.. it might help us to know what might have caused your TOS symptoms.. some sort of injury or repetitive and or static postures over time? Remember many that do not happen to post on forums have a successful surgery & recovery, or they avoid surgery and really focus on therapies & self care. Muscle spasms and trigger points can cause many problems and pain, even referred pain that can mimic nerve pain... It often takes more than a few sets of sessions to see much improvement. It has to be the proper PT - no weights or strengthening til sx & pain is very low. And no increases in sx or pain levels , only then should more active PT be tried. Mine was so bad I could barely use my hands at all for a few weeks. It was all from extremely tight muscles, spasms and trigger points - repetitive assembly job with a mix of static postures & overhead reaching.. I learned about all sorts of self care and had various PTs - some good and some not as good...then found a really good multi modality chiro that helped so much quicker than the PT sessions...I did a lot of self care stuff at home it is something that takes a focused If you ever crashed the motor cycle - expert Chiropractic might be worth a look, especially if they do soft tissue work too.. low level laser is nice if they have it... zaps the pain pretty quickly.. |
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Work: I do sit at a computer but am also up and down constantly throughout the entire 8-10hr work day. I also spent all of 2010-2012 doing graduate school and sat at a desk hunched over many hours. No sports injuries per say: I did run into a screen door April 2013 causing neck pain for a few weeks. Only “injury” I can think of. Lol Sequence of pain: May 2013 – I changed my handlebars on my motorcycle to “ape hanger” style (tall handlebars, arms extended out, hands at or above shoulder level). This caused the beginning of my right wrist pain. Located on the ulnar side. This is also when I began to have numbness to the right small and ring finger after being at work using the mouse for long periods of time. It would come and go. August 2013 – Got rid of the ape hangers, started riding a new cruiser style bike with regular handlebars. Started riding long days and miles = static position December 2013 – bought a second motorcycle with “ape hangers” again. Only ride around town though February 2014 – continued with right wrist pain on and off with right pinky and ring finger numbness. I noticed a def change with occasional right sided neck pain after riding the “ape hanger” bike. One day particular I was on the highway for awhile and my neck was killing me from the wind pressure. July 2014 – continued to battle nagging right wrist pain here and there, no strength loss. Pinky and ring fingers still numb with work and sometimes riding. Very positional with shoulder movements to make it worse. Bad posture at work. Would still come and go. By now I’m also riding the other bike with “ape hangers” more and adopted a riding position of arms out at shoulder height, neck flexed forward to fight the wind pressure, and often times my shoulders are hunched up. So I look hunched over with shoulders up in order to fight the wind. September 2014 – By now I’ve been having occasional right wrist “weakness” with extension, some pain to the forearm made worse with wrist extension. I would come home from work and wrist would feel limp. I started thinking I had tennis elbow or radial nerve injury. I wore a tennis elbow strap which made this worse. October 2014 – This is when my symptoms took a MAJOR turn. I was out riding on the cruiser style motorcycle (normal riding position, mimicked like sitting at desk). I rode for 400 miles that day. On the way home my right arm was hurting so bad and the pain had creeped all the way up to the right side of my neck. I kept thinking I had a shoulder injury because the pain was there also. I clearly remember the pain felt like it was deep and just above my clavicle. I rode another long trip at the end of October which did me in. My pain was all the way up my right arm into my shoulder and neck. This landed me at a Chiro for the first time. Now I’m thinking, “great now I have a neck strain too??” The Chiro did nothing to help and was not the kind of Chiro I would return to. Rack’em and crack’em style. Business oriented for the masses. In fact I started having a pain to the left side of my neck and occasional tingling to my left arm. I freaked out and had CT scan of my neck done. It was negative. November 2014 – By now I’m having people at work constantly massage my right neck and shoulder because of the pain and cramps. I had been experiencing a strange sensation in the back of LEFT wrist now. This was new and scared me (it was spreading I thought) It was a burning sensation with stiffness with extension, just like the right one had started so long ago. Also, by now I had been experiencing some strange sensations to the left upper arm like a dull ache in the tricep area. My left arm felt heavy per say. Both arms would fatigue easy when lifting above my head. I noticed this because at work one day I was holding a phone up on speaker so we could all talk into it for a meeting and my left arm felt so crampy and I had to put it down. I was having numbness and tingling sensations at night with lots of pain to the right forearm. The right shoulder felt like a cramp underneath it or something. This was worse at night. I thought I was having a major disease by now. I went to my primary care and begged for a workup concerning for MS. He sent me to a neuro the next day… at my request, not his. I had 4 MRIs, blood work, EMG/NCV, and neuro exam….all normal, except for my odd sensations. I was dismissed with a prescription of Nortriptyline. Never got it filled because I feel there IS something wrong. Medication is not the answer I was looking for. December – present; I have had on and off arm pain, aches, dullness, and tingling. The right side is worse and mostly positional. Working at the desk using a mouse makes the entire arm go numb, tingly, and painful at the forearm elbow area. If I work too long in the same position it will go to my right neck. The left hand is affected with stiff fingers and dull ache at times to the triceps area. The left thumb and index finger feel stiff and achy with numbness and tingling too. Sometimes this extends into my radial wrist. Summary of current situation: Right side (dominant side and original problem limb) – • Numbness to small and ring finger, positional with certain movements, mainly the shoulder • Numbness to back of hand involving index finger webbing • Wrist extension pain and or weakness • Ache in the thumb and index finger • Pain in the forearm just below the elbow • Pain in the shoulder and right lateral neck, mostly after long static position sitting • Pain like its “under my clavicle” or something…strange description I guess Left side (more recently involved) • Pain/ache/stiffness to small and ring finger • Burning sensation, numbness, crampy feel to back of hand involving the thumb and index finger • Cramps and aches to the palm and fingers with fine motor movements such as shelling peanuts or using a knife to cut up chicken or steak • Wrist extension stiffness that comes and goes • Dull ace to the triceps area, worse if I life my arm above shoulder height How do I feel? Like I have carpal tunnel, radial nerve, and also ulnar nerve involvement all at once, that comes and goes involving a difference of the 3 nerves. I think the motorcycle with ape hangers was a contributor riding in shoulder up, head forward, hunched up position…all while being tense to fight the wind. I also think work, stress, and posture while sitting at my desk doesn’t help. I often find myself hunched over staring into the computer screen with shoulders hunched forward. Before this…I was very active and have no medical history other than mild anxiety. No medication use. I drink beer and do not smoke. Basic dude per say. Thanks for reading. |
Definitely need to make as many ergonomic adjustments to work station if possible and the motorcycles. Cut way down on any aggravating activities...the possibility of long term /chronic pain is not worth the risk of making things worse..
My symptoms kept moving and changing at first , so i had dx of wrist strain, cubital tunnel, De Quervain's, neck /shoulder strain... docs nor I knew of TOS back then...I learned about it before they mentioned it.. and the advanced PTs knew more about it than the drs I went to. Luckily I was able to start healing with good care and didn't need to seek a TOS specialist. If you plan to keep working try to find ways to remind yourself to take stretch breaks and maintain posture awareness.. Often I would work and go home and collapse in my shiatsu recliner with ice packs on my forearms and far infrared heating pad on my back- then turn on the massage function after that.. Did you try these at all yet? http://neurotalk.psychcentral.com/pi...pictureid=5399 http://neurotalk.psychcentral.com/pi...pictureid=5400 foam roll - or large towel rolled up lay lengthwise down spine- rest arms at side.. If you can't do that - then just corpse pose on floor many times a day.. |
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I was very active prior to developing symptoms, so I certainly sympathize with what you are going through. I am one of the people that has had a positive outcome with PT. Symptoms began 9/2011 and finally diagnosed 5/2012 w/ neurogenic and arterial TOS. Had a brief stint of PT after diagnosis and then stopped. I did get some relief, but had issues with insurance (I switched insurance as soon as possible). I then saw Dr. Donahue 7/2013, had botox 10/2013, and have been in PT since. I have not had surgery. Mine is certainly a "positive" outcome so far. I'm slowly but surely getting back my active lifestyle. I'm hoping to do a Tough Mudder later this year if all continues to go well. It's key to find a good PT. Minimizing stress is important as well. Wish you the best- never give up! |
TOS recovery
Hey,
I am happy to go into more detail about my experiences if you want, but I just wanted to say that I had my 1st rib removed on the left side in December of 2012 and on the right side in August of 2014, and I have no troubling, lingering side effects. I am able to do CrossFit workouts and Olympic Lifting 5-6 days a week, and I was not active at all - like ZERO active points - before my first surgery in 2012, so it's not strictly a result of my fitness level pre-surgery. The actual surgery is tough for a little bit, but after my second one, I was walking 2+ miles a day (VERY SLOWLY) while I was still in the hospital - the nurses kept laughing at me dragging my IV pole back and forth in the halls. I was back at CrossFit (lifting amazingly light weights) by 6 weeks or so, and now, six months later, I can do pull-ups and push-ups and lift more weight than I ever had before surgery. I certainly understand that some people have far less positive experiences than I have had, but I can remember feeling really overwhelmed and stressed because everything I read online seemed so negative. I hope it brings you some comfort to know that not every experience is bad - I am super happy I had it done. I even have some neat scars to show off now. Elizabeth, 29, Texas (Left 1st rib resection, December 2012 - age 27; Right 1st rib resection August 2014, age 29) |
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I"m contemplating surgery and it would be helpful to know how your case compares to my own. So, I have a few questions. Any info would be greatly appreciated...and of course, only whatever you feel comfortable sharing. * What type of TOS did you have? nTOS, aTOS, vTOS or some combination of them? * Do you know the cause of your TOS? mv accident? posture/repetitive work? predisposition w/ bony abnormality? * I know you mentioned rib-removal, but can you provide more info on the procedure that was done? transaxillary? supraclavicular? partial or full scalenectomy? neurolysis? pec minor release as well? * What were your main symptoms prior to surgery? And, what symptoms still linger post-surgery? * Who was your surgeon? Of course, always on the look-out for surgeons w/ positive outcomes.... Sort of a lot of questions...but any info would be a great help!! Many thanks in advance.... |
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This is awesome. This is the kind of stuff I never see on this site! |
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