Discussions By Condition: Arm Conditions

Thoracic Outlet Syndrome

Posted In: Arm Conditions 10 Replies
  • Posted By: Anonymous
  • August 19, 2006
  • 04:32 AM

Here's my history:

- car crash in January 05 - pain in neck, back, shoulder and primarily left arm with cold and numbness into my ring and pinky finger. MRI showed small protrusion at c5-c6; EMG/NCV = cubital tunnel syndrome.

- Symptoms got worse with PT, Chiropractic and massage; no range of motion in neck without pain, dropping things and clumsiness with my left hand; pinky and ring fingers turn ice cold for no apparent reason;

- 1yr later, after seeing 3 PT's, 2 chiros, Physiatrist, 2 Neuros, 1 ortho spine specialist, plus 3 EMG/NCV's which the latest indicated carpal and cubital tunnel, I realized my complaints were falling on deaf ears and I kept getting handed pain meds & told I had whiplash.

- Flare up in neck caused me to get another MRI: herniations at c3-c4 and c5-c6 and degeneration set in on all levels of the cervical spine, with bulges and dessication; Also L4-L5 herniation. Still no big deal to these doctors, "everybody's discs degenerate at some point and time" - I was 35 years old and I was later told I have the neck of a 60 year old. Eventually, all symoptoms proceeded to travel into my right arm and now with chest pains.

- 1 1/2 years later, Finally found an orthopedic Surgeon in the Philadelphia area who knows what TOS is and accepts the fact that it exists and I have been diagnosed with Double Crush Syndrome (TOS & Ulnar Nerve Entrapment).
Needless to say, its an uphill battle from not being recognized early on. Surgery is in my future for at least the ulnar nerve issue at the elbows.

- I drive with my hands at 5 & 7, otherwise they go numb from being out and elevated on steering wheel, pushing shopping carts hurts, talking on the phone annoys my arms, holding my 2 month old (11lbs) is a strenuous effort and arms give out, sleeping is disturbed nightly from the most uncomfortable, nagging pain and weird feeling in my arms; when I do sleep, its with about 5 strategically positioned pillows...I can go on and on...but TOS exists, it hurts and more doctors need to at least attempt to recognize the classic symptoms early on.

whats the purpose of this post??? Just letting everyone else know with similar symptoms that they aren't crazy and the pain will be back after the narcotics wear off because the injury is still there.

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10 Replies:

  • pretty erie post. I could have have wrote 90% of it myself minus having an accident. Going on 2 yrs. with symptoms, ortho just keeps passing buck. Don't know where to turn. Nerologist says nothing wrong just live with it! Ha! Ortho keeps sending me to diffrent pt on hunches. mri on neck revealed nothing, in constant pain and know what you mean about falling on deaf ears. Seeing pt now for possible t.o.s. haven't seen enough to know if working. getting ultra sound and laser treatment on shoulders. been twice, not sure if helping, not sure not helping. Any sugestions to speed up treatment due to advanced knowledge would be ever so helpful.
    Anonymous 42789 Replies
    • September 3, 2006
    • 00:15 AM
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  • They ain't kidding when they say live with it. At PT you'll hear, sit up straight, shoulders back, don't lean your head forward etc. All well and good, but you're probably out of posture because good posture hurts.Anyway, to help answer your question about treatment... keep looking for a doctor who acknowledges TOS and try to learn and manage it. I was on my third bout of PT and OT a few weeks ago and the goal at one time was to help get me back to work (Im a police officer) to the goal now being to help me manage the pain and do the basic day to day things. You are like the rest of us and learning more than the doctors we see by reading about TOS online from other victims (patients). We all can't be crazy if we have the same symptoms and I can assure you we didn't all sit together one night and make this thing up. It is what it is but many doctors egos refuse to let them adapt to change and new ideas. I think handing out pain meds to make the patient think the injury is gone is a thing of the past.Manage your health care and find some new doctors. Good Luck.
    Anonymous 42789 Replies
    • September 4, 2006
    • 03:58 AM
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  • jrm133-just an update to let you know things are not improving. seeking new dr.s that are willing to find problem vs. chase symtoms. Not sure what I have anymore. going for mra, simimlar to mri i think. pain meds don't seem to be of much use. might take the edge off. still can't sleep. nothing seems to help. Hows it going on your end? By the way, I run an excavator about 60 hrs./week and seems to be the least painful thing I can do right now. Lucky me!!
    Anonymous 42789 Replies
    • September 24, 2006
    • 00:28 AM
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  • Eds315cl - - -Ive been advised not to do anything repetitive with my arms and hands especially above mid chest level, and work in temperatures of at least 60 degrees or higher. As I write this post, my shirt is actually burning my neck and trap area from the nerve issue (today is one of those flare up days); I have a pain that goes from the inside of my upper arm through my armpit into my chest and my forearms and fingers are "buzzing" with a heaviness. Today is a bad day. Good Luck, Im on month 21 since the injury and it worse than the day I was hit. Im scheduled for surgery in November...they will be doing the nerve release at the left elbow to fix that part of the problem. Keep me posted on your condition.
    Anonymous 42789 Replies
    • September 24, 2006
    • 04:15 AM
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  • Oh my goodness. I'm up right now researching because I'm having such bad pain tonight that I cannot sleep. I have avoided doing much internet research because it actually hurts to do so. But I've positioned myself as best I can and am digging in trying to understand what the heck is going on with me. I reported the pain at work to my supervisor a month ago and was assigned a Dr. Anderson at US Works on Folsom Blvd. and boy was this guy an idiot. At first I felt relieved when he quickly had me do three simple tasks and reported that I just had the beginnings of carpel tunnel and ordered 6 visits of physical therapy. I was relieved that I'd be well soon. Well a month later - I'm awaiting a competent doctor by my employer's workers' comp insurance and have been out of physical therapy since last Monday & it started up strong again yesterday and is even worse tonight. My fingers have been numb since I reported this to my employer, yet I am released for full duty. I hurt so bad sometimes I fear that something may be permanent and I get so angry that nobody is giving me competent medical help.After reading just a couple articles tonight and your posts, I feel so relieved. I feel like nobody believes me!! I'm printing these articles up and I'm going to let them all know, I've diagnosed myself WITHOUT ANY MEDICAL TRAINING. If I don't get an assigned doctor soon, I can maybe just pay out of pocket to get my diagnosis??Does anyone know if I'll be able to be reimbursed later through workers' comp benefits?How long should I waite for relief? And continue to work and make my symptoms worse. I can't believe this is happening. Thank you all for taking the time to share.DON'T EVER GO TO DR. ANDERSON, USHEALTHWORKS CLINIC - FOLSOM BLVD., CALIFORNIA. HE'S NOT MEDICINE, HE'S WORK COMP DETECTIVE. STILL NEED TO GET HIS LICENSE TO REPORT HIM TO THE BOARD. He's really made this process more painful!!
    Anonymous 42789 Replies
    • October 22, 2006
    • 06:56 AM
    • 0
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  • Hi I like you am 35 yrs old. When I was eighteen I was in a rollover on the hwy and sustained severe whiplash with chronic neck, shoulder, arm and back pain...Permanently on narcotics, I endured 7 years of physio, 13 specialists the whole shabang. Fast forward to Feb 24 2006. I was rearended at a red light at 50 km so needless to say initially they thought I fractured my neck so I had a CT scan which showed old scarring, arthritis ect. My arm continued to bother me since that accident. The last three months my hand and arm goes almost completely numb, but oddly the pain in my first four fingers and my arm can be so bad I am ill! So I shake it off until this past weekend I couldnt even bend my fingers, my hand was the size of a balloon and ice cold. I drop things, cant grasp much and its just horrible! I went to the ER where the doc figures I have some nerve entrapment issue in my C5-6 and may require surgery and this could be permanent. My family doctor is extremely concerned at the change in my arm and has put me off indefinitely. It sounds like what you have and I am so scared! It sounds very permanent, the surgical options are scary and what if I am left this way???? Also nights are the worst!! Any advice? rellik70@hotmail.com
    Anonymous 42789 Replies
    • November 15, 2006
    • 02:12 PM
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  • Back in 1997, I was involved in a car accident. A few months later I was diagnosed with TOS. The surgery that was performed was a left upper cervial rib resection. Nerves had become trapped in my neck by a cervical rib, which in women, would have been an extra set of ribs had it formed all the way. Since the surgery, the symptoms improved. Good luck.
    GRLNSCRFAN 1 Replies
    • November 19, 2006
    • 08:20 AM
    • 0
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  • zj3gfHi guysI feel your pain. only since you understand mine. I feel like for once someone else is speaking my language.I was diagnosed with TOS year 2000. and i was treated for about 6 months. before I knew what happened, workers comp stopped my treatments and I was force to get a lawyer.2 years later (2002). from this doctor to that I was diagnosed with 21 different symptoms. Excluding all the psych symptoms.in pain and depressed, by year 2006 they used my depression to call it a, are you ready, (chemical in balancement ) Ie. my mind is making it up.Help!@*%@*!!@@???!!#@***I am so mad I feel like pooling my hair out one by one, problem is i can't hold the hand up long enough, with out it going nasty on me.I have been called a woman, who is hysteric about little pain, that her mind makes up, caused by the depression. it just so happens i get my sharp pains after doing repetitive work, you know like reaching, grabbing, bending the head. ...... Hello!!! tingling+numbness+heaviness+ coldness = lack of blood flow!is that so hard to understand. ever since this last diagnosis all my benefits were stopped. No money, no doctors, no medication which doesnt work any ways. just a bunch of stress and anger.2007 in a month I finally get my day in Court. I am using the little time i can use my hands to use the computer to research all I can. any kind of hints or recommendations would be great. Help!!I am hoping that, the pain from the neck area has moved down to my chest.it's either that or I am going to die from something else.As for you Guys.Do not trust the Doctors and lawyers. ask for a TOS specialist. I should have done that, but I thought doctors would know more than I.You have to be on it and push for the right doctor. or you will end up like me.the bad newsUnfortunately the pain never goes away. But amazingly you get use to it. while you are in pain the sun keeps coming up and the moon keeps going down and pretty soon, your restless nights turn in to years.the worst thing you can do is to give up. trust me it is easier to leave than to die. Don't fight with TOS, understand it, learn to leave with it. it doesnt mean you are giving in to it nor giving your abilities up.Now a days when I don't have the symptoms, I am all in aahh. looking to see what i did to stop it. instead off looking to see what started it.a human body is an amazing thing. It has to survive broken or not.fortunately my first doctor showed me diagram by diagram as to what was happening with my body and my arms. it help me understand it. My house is set up according to it. and so is my life.I have lost some friends, and i am insecure to be seen when i get the shocks or the spasms or the other symptoms. I stayed home for about 3 years. and I can't do what my family and friends can do.I have lost everything I have worked my entire life for. I used to plan for years a head, but now I plan for today. tomorrow is another day.thank goodness for familymy arms are acting up.if you have any questions maybe I can helppeace You all and may your nerve stop getting blocked.ps. this letter took about and hour got to go ouch
    Anonymous 42789 Replies
    • February 9, 2007
    • 05:14 AM
    • 0
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  • There is hope!My story is much like all the ones listed here. Through a variety of injuries (including a horse fall, several car accidents) I was left with neck, shoulder, arm and finger pain, with the tell-tale tingles and numbness in my fingers. My arms would get to ache so much they were like dead weight. I had to stop playing guitar, and it was very hard to make a living as an IT guy when my fingers didn't want to move on the keyboard.I went through physio, several chiros, and a surgery. No improvement. Often, physio made things much worse.In February of 2007 I tried Laser Therapy from Meditech. In five treatments my arms were symptom free, and I could hold my 6 month old daughter in one arm and toss her in the air. I am on no medication.So I figured ... this stuff works! I convinced my grandmother, who has suffered with arthritis for 50 years, to try laser therapy. She was in so much pain, even with a full regimen of drugs, that she could bare grip her pants to dress herself. She was unable to hold a broom, and certainly could not hold her great-grandkids.After 6 treatments over 3 weeks (interrupted by the loss of my grandfather - therefore lots of hugging and handshakes and no treatment for a week) she has been shoveling snow, driving freely, and - most importantly - holding her grandkids.My condition lasted nearly 20 years. My grandmother over 50 years. Both were healed quickly.There are several companies that offer laser therapy, but I can only attest to the one I used. Meditech (www.meditech-bioflex.com) has a clinic and produces the equipment for clinics around the world.I really hope that some of all of you can find some relief from this awful pain!Ryan
    RKFcomputers 1 Replies Flag this Response
  • I have TOS and had surgery. I am much better. You can get lots of info at a new site for us TOSers. atosa.org
    Anonymous 42789 Replies
    • December 22, 2007
    • 04:57 PM
    • 0
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