[rogergayla21]

i am so glad to have found this site. i have had a NCS and EMG as well as a simple xray and the preliminary diagnosis is TOS. I am scheduled for an MRI on Feb 6th and hope to get a defenitive diagnosis. So far it appears I have a Cervical rib and my symptoms are getting worse. My main question is if they decide to do the surgery, how long can I expect to be out of work? I am a sofware trainer, so no heavy lifting needed. thanks in advance for your answers.

Roger

[tshadow]

Have your doctors not given you any idea of when you in your particular case and given your job description, should return to work? I will be honest with you below, and this is not meant to be sarcastic or mean, just the plain truth here, ok?

How could we on the Net tell you such a personal, fact based decision, without knowing your work habits, expectations, your health, or how you developed TOS? I mean, we can GUESS for you, and maybe some can say when they returned to work, but again, that would be a real CRAP-shoot. Emphasis on CRAP.

Every single TOSer is actually an individual and I've seen everything from people feeling good enough to go out to dinner after a few days, to taking months to get over the surgery. Have you discussed with your doc HOW they are going to go in, and what the various risks are? (My surgery went just fine - no complications from the surgery itself.)

I developed my neurogenic TOS from the computer. Hours of overwork, bad ergonomics, but also something in my body which didn't like the constant repetitive movements. People who get TOS are UNIQUE and this is a rare injury.

I live in horrific pain. I have NO life. I worked another year after this started - I modified some things, but basically still tried to bill 70 hours per week for my law firm. When I say horrific pain, I can say that there have been many times I have contemplated suicide - how to do it, where, what I need, all of the details, only for the reason that the pain goes higher and higher, never ends, I go to sleep with it, I dream in it, I wake with it.

There is no cure or treatment left for me. The docs can't help me. I've seen 30 docs now.

IF I were to have a surgery that helped it enough so that I could return to work, WHY would I ever return to computer work in the same exact fashion as I got ill from? A big part of healing would be understanding HOW you got sick, and finding a totally different kind of job that would not trigger this all over again. This is YOUR LIFE now, not just your income and status. I know, because I made the mistake of working for another year (because I didn't know I had TOS, I had a bad hand ortho guy telling me it was just over use), and then I developed RSD, fibromyalgia and now autonomic neuropathy. (Please read up on all of these, you need to know what you are risking or facing, and how serious this condition is in relation to any other injury. I have heard attorneys and doctors say, "TOS - oh that guy's life is over, there's nothing that can be done...Whether we agree with that is another matter, but this is the WORST of the work injuries and despised by the insurance adjusters as the highest costing injury.)

I've had neuro TOS or brachial plexus neuritis since 2002, stopped working 2003, lost my house by the beach, lost a $100K plus income with promises of much more rather quickly if I could have hung in there, so I am no slacker or lazy or malcontent. I was a winner, a fighter, ambitious and capable of other jobs than my one as an attorney and Pro Tem judge. (I actually wanted to run for political offices when I hit 50.)

So I warn you that your question implies that you have not fully grasped the invasive and potentially live-ruining aspects of TOS, extra rib or not - IF you are lucky enough to have a good outcome from your surgery, be ever so careful as to what you do to your body afterwards.

I had some benefits from surgery. However, 1 1/2 years, despite being bedridden now, and fighting for my health with all of my power, all of the symptoms pre-surgery are now back, plus more of "autonomic neuropathy." Read up on that one, as basically you feel like you can't breathe, your digestion stops working, etc. This is very scary stuff.

So to your question - returning to work after surgery is a LOT more than just a question of how many weeks, etc. Your main goal should be figuring out how you developed TOS, listening to your body after surgery, finding proper Edgelow or Butler PT, and what modifications you will need to do after surgery to your working situation. Many people voluntarily stop working altogether, or, find work that is not using a computer or upper body in a repetitive way.

I hope you take this warning with the good intent with which it is imparted. Please, please after surgery, be careful. What you do could affect your life, literally, for the rest of it, and all aspects of it.

There is at least one person here who thought she was cured from her TOS, but after a long driving trip, she triggered the TOS injury all over again. Maybe she will post also.

I don't know what pain level you live with so far, but my guess is you aren't too far into TOS, and don't forget that you can trigger RSD and fibromyalgia and goodness knows what kinds of rheumatological diseases by pushing yourself after this major surgery.

Good luck Roger and please, continue to visit here, learn here, read all you can about this rare and complicated and very misunderstood condition, and share you concerns. We do care very much.

[watsonsh]

Hi Roger,

That is such a tough question. People heal (not from the TOS) but just from surgery at different rates. Pain control and swelling will be issues as well as how they go in to take out the extra rib.

I went back to work within a week only because I had to but really only sat there each day until I could go home and rest. I rested in my office per se. But I was so not ready to be back.

I would say give yourself a couple of weeks and make sure you have a good PT that understands TOS. Bad PTs can screw up a good surgery.

Good luck and

P.S. Are you in So Cal? If so PM me I have a good PT.

[rogergayla21]

TShadow,

Thank you for your reply, I took it with the intent I believe it was written. I know you can't give any answers without knowing me or my condition better, but I probably asked the wrong question. I was trying to judge something that as you implied is different for every person. I am not ready to give up working, yet. I have two teenage daughters and a lot of college to pay for in the next 10 years.

I have been trying to get a diagnosis for a couple years now, but as you know it is a hard problem to "nail down". I have an MRI scheduled soon and hope they can give me some answers after that, but who knows. I have been in constant pain for the past year, give or take and it is steadily increasing.

Thank you for your "in the face" reply and I plan to frequent this board as to learn more about this horrible problem.

[rogergayla21]

Shelley,
Thank you for your reply as well. I like your answer better as I an a "glass half full" kind of guy.

[tshadow]

Roger,

When I first researched TOS in 2002, no one had a list of testing for it, and the internet articles gave very inaccurate information. Just in that time, the articles have changed, and I know this as I have a file and shockingly the top US government sites have changed their statements in significant ways. So TOS knowledge and opinions are changing at an alarming, but perhaps more informed, rate.

I have a 20 and 24 year old - both girls also. So that you understand my financial picture when I first got symptoms, at the point I got sick, I had just sold my home in Orange County and was going to buy a newer, larger one by the beach. I was also just about to lease a brand new jaguar convertible - my girls already had their car funds set (by me) and they did end up with their cars, only not the ones we had planned. We already had a brand new Lexus SUV. Financially, I was on the rise, and in my law firm, I was definitely on an equity ownership path about to be realized. I never did lease the jaguar - something instinctually told me not to. I did not buy a new house - I rented one by the beach and only recently lost it, having to move to my weekend place here in Palm Springs, and using almost all of my substantial savings to weather this illness, pay for out-of-pocket expenses, meds, non-covered visits to TOS experts, and be able to fight the insurance co.s for the policies and benefits I had in place before I got sick. (The insurance co.s like to cut things off, and then I have to hire law firms to threaten them, then they start things back up, but during that time, I would've been homeless and without any funds to fight them if not for that substantial savings fund.)

The oldest daughter I was able to put through her double major university degree with no cost to her, no monies owed. She went off to school just as I was starting to get the symptoms. At the time, the ortho hand expert (and I got the BEST doc in Orange County) said I was just suffering some overuse...no need to stop working or worry...what bad advice that was. I lost precious time and got terrible medical advice from him. Now, my oldest is trying to figure out how to do a master's degree.

The younger understood my limitations, since I had to stop working when my hand blew up red like a lobster and I couldn't dress or shower anymore. She has chosen to start with a community college, which kills me, despite having an established college account. She is trying to refrain from using it, yet, as she plans to get her PHD.

She actually wants to get a health science (research) degree so that she can help to find a cure for my injury. I think she is an angel from heaven...I surely don't want her to alter her career plans for me, but she really seems excited about the health field and her goals, so I am excited for her.

My girls watched me grow from being supermom, super attorney, super judge and all around go-getter, to being bedridden. It's affected them both enormously, despite my counseling for them. (I've disclosed before that I've spent a total of probably $20K for both of them to have years of counseling for this.)

I will post my usual (macro'd) post about the testing for TOS. Unfortunately, there is not a one-shot test that will show TOS. It would be so much easier if so. But the issues of physical therapy are important, as is one's choice of doctor, etc. I had "bad" docs first who although they said they "knew TOS", I now know did not. For me, going to Denver was great as it finally gave me a definitive diagnoses, neuro TOS, (or brachial plexus neuritis), RSD, fibromyalgia, and one doctor believes I have a rheumatological disorder which has not been identified because as he puts it, "there are hundreds of rheumatological diseases which haven't got a name, there are not tests for them yet, and they go unidentified yet you suffer from one."

I don't think heavy lifting was the cause of my illness. I actually think that using a mouse, repeatedly, caused micro damage that ultimately caused the big damage that I deal with now.

I also would really wish that I had the health to research and analyze this situation as I normally would have. But also the statistics on repetitive strain injuries / TOS / nerve damage as a result of computer use, both on leisure and work time, just aren't available yet. None of the main health organizations (CDC, NINDS, OSHA) publish yet appropriate statistics (that I have found) on this subject, for me to start any kind of research on it. My guess is that the current ergonomics / keyboard / mouse (with the exception of voice software used exclusively from day one) are the culprit for a new generation of nerve injuries that are not yet understood. My youngest daughter believes this also.

In law, we have products liability. I wonder when and what will happen when and if my theory proves correct.

What is your background in computer use - how many years? Did you work on one for more than 8 hours in a day? How long have you had symptoms, and what are your primary symptoms? Do you yet require any medications?

It is true that with a cervical rib (that is not the norm) your possibility for recovery is higher, from my reading. Also, it seems so far (again from reading) that men seem to recover to a higher degree than women.

You don't mention work comp, but even if one has a cervical rib, unless you have another reason (like an auto accident) where one can definitely point to causation, then work is likely the cause. I always suggest that people get a free consult from a work comp attorney who has expertise in repetitive strain injuries to the upper body (computer industry experience) to analyze whether you have a claim for potential permanent disability and future medical as well as legally holding one's position under current employment law.

Best of luck to you on your healing path.

[tshadow]

Roger, in case you haven't seen this already.

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

[KLS2007]

Tshadow, you've definitely got me thinking about all this & I too would love to see some good statistics on repetitive motion injuries. I first developed carpal tunnel syndrome in the late 1980's as well as the radial & ulnar nerves. I had 3 surgeries on the carpal tunnel and one each on the other nerves and ended up with a 35% disability in my right hand. Back then there was a lot less information on repetitive motion injuries and thanks to the help of a great attorney and a great surgeon I was able to get worker's comp to pay for the medical care that I needed. Up until September/October 2007 I was symptom-free as long as I didn't overdo anything and only used computers on a limited basis & of course I was a fanatic about ergonomics. In 2005 I was laid off from my job and due to my financial situation I was forced to take a job that required 8 hours of computer work daily. Now I sit here in terrible pain dealing with WC again and getting nowhere with my medical treatment (that's another story!) and have often thought that something needs to be done about repetitive motion injuries. I personally know a lot of people with carpal tunnel syndrome (and probably have other undiagnosed RMI's as well) and yet nothing seems to be done about preventing them.

[rogergayla21]

TShadow,

I spent 20 years in the Air Force, mostly doing minor maintenace on life saving equipment, kind of assembly line tear down, inspect and rebuild. After retirement I have spent three years behind a keyboard for give or take 8 hours a day.

I am going to look into how my ergonomics at work can improve and make some changes. i am on a couple pain relievers mobic, motrin and also a muscle relaxer for bad days.

The great news is after retiring from the AF my medical bills are 100% covered, so money for testing and any subsequent treatment won't drain the bank.

I will make sure to follow all the advice here closley and ask you all plenty of questions along the way.

I will add everyone here to my prayer list.

[rogergayla21]

KLS,

i would love to pick your brain for some ergonomic ideas to help relieve some of my pain.