How were you diagnosed?
 

I've read most of the TOS postings and know that quite a few people have negative EMGs, etc. How did you get an official diagnosis?

My WC Dr. just called & told me my EMG was negative. I don't see how that is possible since my pinkie & ring finger are numbish & shake constantly. Then again, the technician who did the EMG was very snotty about it being a work injury - apparently she thought TOS was entirely congenital. :rolleyes: No idea where I should go from here. The p/t says I have TOS.

He's sending me back to work Monday. My husband thinks I should just quit.

i don't think we ever actually get diagnosed with TOS.

i first heard about it, actually right when i got it, which was by a physical therapist who said that is what she thought it was. her remedy: improve posture.

i was in the workers comp system and they refused to pay her so i stopped going to her.

i ended up just quitting because it was just a temporary job out of college.

i recommend that NO ONE use the workers comp system. if you have your own insurance, you will be more likely to be heard (not that you will be heard though) about your TOS.

i had one doctor flat out tell me that he is very reluctant to operate on workers comp cases. non workers comp cases (as mine finally was), he was ready to cut me right there!

by the way, my understanding is that TOS does not show up on EMG. my EMG is perfect. even when i was compeltely debilitated, it was perfect.

Thank you!

How debilitated were/are you?

I lived in Mpls many years ago- it was a lovely city.

TOS & WC is a very tricky thing..hard enough to get good & timely treatment with pvt ins... wc is a real pain.. mainly because it is so hard to dx & prove.

If you go forward with a wc injury claim...
Have you sought out a very good WC atty to represent you?

If your symptoms & pain levels are low/moderate or intermittent and you can afford to get by with 1 income for an extended amount of time, by all means quit, just to save your sanity.
Your new job will be focusing on your health & healing.

I did the wc thing, up to a point, but wasn't majorly disabled for the long term, like some that have posted in the past. I was recovering being off work & doing much self care & chiropractic & adv PT, which I found on my own, not thru the wc system.
I was only majorly disabled for a couple months - barely could brush my teeth, & trouble with other bathroom things:o
Barely could cook or clean...
I did get some decent PT so luckily those worst things resolved, but was still limited as to uses/time.

EMG pretty much just rules out that there is definite nerve damage already happening when it is positive.


What type of job do you do?

i compeltely rested after quitting my job and went in to a non computer work job. it has bought me time but slowly it is all returning. i limit this and i limit that. i am getting to the point where there is nothing left to cut out of my life and it is all catching up with me. i am trying to solve this once and for all.

considering surgery but want to exhaust all options before doing so. i cannot find a pt that knows about tos (well, they all say they do but they only make me worse).

every doc i have been too as told me there is no such thing as conservative treatment that will actually work. BUT, the websites say there is. in fact, some say most people are cured by conservative treatment.

my next stop is my personal trainer to help me with posture. i have been to every health care type of person imagininable.

Jo Mar - I work on a computer reading applications & Dr records. It's a lot of screen changing & typing. Sitting in my ergonomic chair, using my ergonomic keyboard, wearing a posture brace & wanting to cry because it hurts & my fingers quit working after a while Granted, it's only 4 hours a day (voluntary reduction in hours on my part) and I work from home. So no driving.

We would be fine on one income. My husband wants me to contact an attorney so I'll do that Monday. It would be so much easier to just quit but it ticks me off that my employer would then be off the hook.

Now my husband has to open my pop bottles.

With really good care, lots of self care & lots of luck it just might get better for you too. So don't give up.

WC hoops/rules/red tape will tend to slow down/drag out the healing process, it might be even harder to prove a clear cause since you work at home...


esp if you do go the wc route, sometimes they do searches for names or dates or specific injuries.... usually more so for the more costly claims.

You can check our Work comp forum for stories & tips. It will help you decide if it is worth it or not.
http://neurotalk.psychcentral.com/forum30.html

It may help to make a list of pros & cons doing wc vs pvt ins?

Yikes! Yes, please remove that info. I've been complaining of hand numbness & pain for years with this company so there is a clear paper trail. It's only been the last couple years that I've worked from home - previous to that I worked in the office.

Actually, now that I think about it, I've gone downhill since rotator cuff/SLAP tear surgery in 2010. Lack of conditioning, maybe? I used to work out with weight machines 2 to 3 times a week before injuring my shoulder.

Thank you for your replies, JoMar. This site has been a godsend.

Holles,

Are you in a state with good work comp laws? Correction, Are you in a state with work comp laws that just suck instead of really suck?

If you go the work comp route, file a claim and get a doctor to put you out of work. You need to stop this now and you need to start healing. Working more on the computer is not going to be worth it.

Heybro,

I live in NE & would have to say it's a business friendly state. Also, can't find any p/t or dr recommendations anywhere.

Already filed a claim & was off work for a couple weeks. The PA (not a Dr.) clearly doesn't know what to do next so he sent me back to work. I imagine he's getting pressure from the w/c insurer AND my employer (no one wants to do my work).

Planning on calling him tomorrow to say it's painful, give me a referral.

Be sure to request someone expert, skilled & advanced or you may just get a so so PT.:(
They don't have to know about TOS specifically, but as long as they know the body well, and communicate with you as to how the sessions are going, and NOT making your worse, they should be of help.

TOS also makes for referred pain/symptoms & delayed pain/symptoms, so PT has to be adapted if pain increases later on after the session or even the next day. It often takes awhile for us to connect the dots unless someone has mentioned it so we know what to be aware of.

And the focus should be more the whole body & posture not just where the pain is. (natural alignment not forced /military postures)

referred and delayed, oh my gosh, it is like talking to a long lost friend.

no one understands THAT! they put your arm this way and ask if it hurts. i'm like "ask me in five hours!"

and one day i came home and was in fcuk siht pain and i was like "what did i do different!" and then i realized i had used a phone earlier. UGH.

Holles - i sent you a private message.

heybro...you got it down right. I love some of your comments. Your right, I will be in pain and ask myself what I did to cause it, and sure enough it was something from earlier in the day.

Or the day before...

YUP! Exactly!

And whenever I try something NEW, I go really slow and sure enough, BAM, I'll get hit real hard just from that new thing I tried.

YOU GUYS ARE COOL!

Glad I found some long lost friends here!

So Frustrated!
 

I will never understand Doctors. My own physician previously said he thought it may be fibromyalgia, so I asked for a referral to a rheumatologist. They won't see me. But they will refer me to a pain specialist. WTH? I don't want pain treatment, I want to know what is wrong with my arms & shoulders!

These visits are thru my own insurance, not work comp.

I have a visit to a spine specialist scheduled for this Thurs so maybe I can get an answer then. Again, this isn't thru work comp. I've given up on that system - they are way more interested in me going away & leaving them alone to count their money than figuring anything out. Although they are sending me to a hand specialist (!!!) & then meeting with their medical director. Probably to shut me up. Sheesh.

yes, doctors do not understand TOS so they begin to say that it is in your head. pain management is code for "there is nothing wrong with you, we think you are making it up"

you need to see someone that knows about TOS. actually knows. go to a vascular surgeon that has done it or a physical therapist that has actually done it. there is a PT list on here called NEW PT list.

They think I'm making it up? Why in the world would I do that?

Sadly, my state isn't represented on the new PT list thread.

Well, the hand Dr. said a percentage of people have normal EMG with carpal tunnel and he gave me a cortisone shot. He doesn't believe in TOS. The shot actually helped my hand. Unfortunately he also poked around above my collar bone & set off the spasms again. Horrific headache & heavy arms that night & the next day.

The Spine Dr. said I have cervical degenerative discs, which I already knew, and said I should go to a neurologist.

What do you guys think? Would a neurologist get an MRI of the braxial plexus area?

i dont understand how a doctor couldn't believe in tos

what if you bombed a vascular test, would he still not believe in it?!!!

I am assuming you are in Nebraska near Omaha.

What kind of Dr. was the Spine Dr.? Neurosurgeon? I think Neurologist when I think Spine Dr. There are some Neurologists with knowledge of TOS, but not many. Vascular Surgeons have the most experience with TOS. Unfortunately there is no definitive imaging for TOS, it is mostly a clinical diagnosis.

You may want to check out this Physiatrist in regards to diagnosing TOS and possibly getting some further direction.

http://www.nebraskaspinecenter.com/o...x?ID=8&Section

He did his residency at Washington University Medical Center - Barnes Jewish Hospital, home of Dr. Thompson's Thoracic Outlet Syndrome Center.

I also found great benefit from massage once I found a therapist with TOS experience - http://www.bestomahamassage.com/moinca.shtml

Hopefully, you can get better without surgery. If you require surgery, you may have to travel out of state for an expert TOS surgeon.

Holles,

I agree with Marc. The physiatrist is probably the best route to go. I've been dealing with TOS and/or spine issues for nearly a decade now. In my own experience, I've found neurologists and neurosurgeons to be dismissive towards TOS even after having a very successful outcome from surgery. I think it has more to do with what they've seen during the course of their career than an outright dismissal of TOS. I had a neurologist once tell me that he liked the interesting cases (MS, Parkinsons, epilepsy).

In my experience, the physiatrists were the most open to TOS. You may need to see more than one physiatrist before you land with a good one.

Regarding testing for TOS, again, Marc is correct. It is mostly a clinical diagnosis so don't get frustrated that nothing shows up.

Thank you Sheri & Marc!

The spine guy was Dr. Longley from the NE spine institute, an ortho. Must be one of those Dr.s who think if they can't operate on it, it doesn't exist. He did give me an rx for therapy with the note of "TOS". Online, his dx was degenerative disc disease.

I will call both your suggestions, Marc. You are amazing.

Some Orthopedic surgeons do spinal fusions, but I wouldn't call them spine doctors (no offense to Orthos). Neurologists are spine doctors and Neurosurgeons are spine/brain surgeons. I wouldn't let an Ortho touch my spine or my thoracic outlet...but that's just me. ;)

Hi Holles, I actually found out I had TOS after blood clots formed in my chest and arm turned blue and swollen. The Vascular surgeon I met at the hospital though, confirmed his suspicions of TOS on the CT scan. He could see the area in the scalene triangle was too small. If you have not had CT scan may be worth the shot, since no tests will actually show compression. I know its not a common test and take a TOS savvy dr to see. Not really sure. So sorry for your pain and frustration! Lauren

Holles Don't give up. I was diagnosed after a clot in my subclavian vein moved to my lung. The first vascular surgeon I went to see said I had TOS but didnt do much in the way of test's for a more formal dx with all the facts. Check the doctors list above to find a Dr close to you. You might find that a neurologist useful also to check on the nerves as well. Good luck. Your not alone there are many of us who have been on the TOS round about.

TOS is a group of symptoms, but I'll bump up my writing on "testing" which is the best I can do, not being a doctor.

I have been fighting work comp for 9 years, but I just won a 100 percent case. I strongly recommend finding how to a get a copy of Dragon voice software, but you need to see an attorney and as TOS progresses, you need an advocate. Your doctor (if work comp) can write you prescriptions to get home aid health, if you get to the point that you can't drive, get groceries, dress, change your bed, etc.

Hopefully you will not get that bad.

Well, now work comp has told me that, since no one can find anything wrong, they don't feel my pain is work related. Really. I have an appointment with a physiatrist next month (the earliest I could get in) on my own insurance.

Another question for you experts out there - when showering a couple days ago, I reached down & back to wash my leg & the left shoulder girdle went "clunk" and moved. Has that happened to anyone else? So weird. Hurt like heck, too.

Supposed to be going back to work Weds but guess I'll have to quit. No point in injuring myself further.

I am facing similar issues with workmans comp. Except I had a wc surgery for frozen shoulder, torn labrum, rotator cuff tear, and had my bursa removed to make space. After the surgery, my hand was tingly... for almost a year now. Had emg, shows slow response annd also muscle atrophy in hand. Pain has extended to my arm and shoulder. Shooting pain and numbness down arm. WC says it is not related. Getting treatment through my own insurance but will soon be MMI through comp. I want my case to remain open because the TOS is related, just have not found any documentation showing that this could be from the surgery or pain pump.

Andrea - I swear I've seen documentation about problems caused by the positioning of the arm when getting rotator cuff surgery.

Work Comp insurers have no conscience.

Andrea,

I can relate to the torn labrum and obviously TOS. I tore my labrum 4 years ago and developed TOS from that same injury. For me, TOS was suspected right away (within 2 months) due to the significant swelling, coldness, etc. that I was experiencing. You might need to see an experienced TOS surgeon outside the wc system to get the diagnosis and see if they can say it's related. I don't have experience with wc so I can't offer more help with that.

My psysiologist said "you had a pain pump didn't you" and then suspected TOS. I have been monitored for a brachial plexus injury over the past 6 months since surgery. Of course not thru WC because they said it is unrelated. I guess some brachial plexus injuries spotaneously heal... although the numbness/tingling in my thumb and first two fingers has dissapated. I have no strength in my ring or pinky. My arm is tired from everything and feels like it is too heavy. Laundry, driving, writing, typing. Ridiculous. I have private insurance and it is not an issue of getting care. I have worked thru my entire injury except when I was off for surgery. My employer is selfish and allowed me to work when I had a no use of arm restriction. Just more worried if I were to receive more restrictions/time off whatever would I be protected?

Andrea: http://www.pitt.edu/~position/complications.htm

Nerve damage can result if your surgeon didn't position your arms correctly during surgery.

And now I'm wondering if my problems are due to a 2010 rotator cuff/ Slap repair & very aggressive physical therapy. The P/T would put my arm over my head & push hard on the shoulder joint. It was "make me cry" painful.

My therapy was the same. 5x a week for 10 weeks. Before surgery I had a much more normal physical therapy experience. Thanks for the info:) What is your treatment like now?

I was originally told I had a frozen shoulder b/c of the shoulder pain and decreased range of motion. Had all kinds of x-rays, MRIs that were negative. I saw a neurologist because I started having numbness in my hands/arms. Because of my symptoms he was pretty sure I have TOS. My EMG/NCS were negative, but I had a doppler study that shows that my pulse diminishes when I hold my arm in different positions. Not sure how 100% conclusive this is for TOS, but it isn't normal

My mri was negative until I had the dye injected with it (arthrogram I think). My emg shows slowed nerves done 3x (every few moths) and I just had the vascular doppler study showing no pulse in either arm in certain positions. The weakness in my 4th and 5th finger is what my doctor was concerned about. Has not improved. He is supposed to contact me tomorrow to go over doppler study.