what percentage of TOS people are working ?
 

Friends,

I am suffering from bi -lateral ntos .I left my IT job and now doing masters to take a teaching job just because of tos issues.
I would like to understand in general how many of us on this group are still working full time?
My symptoms are slightely increased due to attending classes and now have a swelling/lump on left supraclavicular region.One spine doctor said its trapezius muscle swelling but I think its scelene muscle and is due to my cervicothoracic joint inflammation.
I am quite new into this and really afraid by considering my efforts to do masters shouldn't go waste if I will not be able to work in future.

Please give some ideas.


Ramdas

I had TOS surgery in 1991 and have been on disability ever since.

I was able to work with TOS for 11 years, then it got worse, my arteries became compressed, I had to have surgeries and haven't worked in more than a year. I'm getting disability...it went back starting the day I stopped going to work.

I had a neuropsych eval that documented the amount of pain that I am in very well which helped my disability case.

If I had stopped working when I was 23 and got TOS, I would only have received SSI, at $733 a month for disability. Because I worked I get SSDI, which is much better for many reasons and is based off my earnings, if you have a spouse their income doesn't count against your disability payment when you get SSDI rather than SSI, etc...

If you get student loans and later get disabled and are disabled for more than 5 years your student loans can be forgiven if you have a doctor fill out a form.

Generally, I feel glad that I worked in spite of the pain for all those years...I'm a few classes off from my master's and feel like "what's the point?" though, but maybe next year....unfortunately, my TOS has gotten worse in the past couple of weeks with the weather getting cold again.

Eight,
My symptoms are minimum but aggregate with computer usage and gets lot of chest, supraclavicular pain.
Do you mean to say you worked 11 yrs on computer even after TOS?
This motivates me to join the work again.We in India don't have any form of disability benefit , we only pay taxes.
Thanks to my spouse since she works which helped to keep money flow for medicals and monthly expenses.But I am just 32 yrs and cannot stay away from work for future expenses and have a kid too.Its horrible feeling when I think of dark future .

I am 39 and have been dealing with TOS since my early twenties though I didn't get a diagnosis until last year. I have been told I am a complicated case. I have been on disability for over a year now following my robotic rib resection which did little to help my symptoms. I have yet to proceed with surgery on my other side because I don't know who or what to believe anymore. Prior to my condition exploding, I was a technical leader for one of the largest tech companies on the planet. Long hours of computer use was the norm. Now I can't spend 15 minutes with my arms pronated before my arm/hand/shoulder symptoms rage. My hobbies included working out and playing guitar. The trifecta of repetitive stress activities. Now that I have gone through the surgery and have seen few if any improvements, I question whether my situation would be different had I been diagnosed 15 years earlier. My personal opinion is that continuing repetitive stress activities has the potential to take an acute problem and make it chronic/permanent. I am in the US and I do understand your situation living in India. I have visited Bangalore for work and had hoped to get back before all of this blew up. Regardless of where you live, my advice to those reading this post is to start collecting your medical records early on in the process. What seems trivial today may be critically important in the future depending how your TOS story unfolds. Buy a large binder and some tab dividers so that you can organize everything. This will be a 100% necessity if you are trying to navigate the mind numbing social security system in the US. Every time you see a doctor, a specialist, go for a test, etc., get a copy of the records and add it to the binder. If you have a specific discussion or event that you may need to recall at a later date, write it down and add it to the binder. I have a 4" binder that is almost full and that only covers the last 4 years of my life. I don't want to paint a picture of gloom and doom as everyone's TOS story is different. In my field, we say "security is a journey, not a destination". The same applies to here. TOS is a journey, not a destination.

Thanks tpula.
What kind of tos you have ? Any troma history or only computer work?
So whats your advise on my masters ? Shall I continue it by taking precautions because I definitely don't have that pain level now since am not touching computer now.

I have signs and symptoms of all three forms though my official diagnosis is bilateral venous TOS. No trauma just a history of strange muscle issues even as a child. My TOS surgeon told me that a lot of my problems are likely vascular in nature. Circulation issues can cause unhappy nerves. Unhappy nerves cause unhappy muscles. Basically a vicious cycle that I have never been able to escape. Of course the same surgeon told me he could offer a predictive outcome and near 100% chance of success from the rib resection surgery so I don't really know who or what to believe at this point.

You are talking to someone who is a big fan of continued learning. My TOS symptoms exploded shortly after finishing my masters degree. Who's to say which of my three activities (computer, guitar, working out) flipped the switch. I would suspect a combination of the three. I would like to finish what I started by completing my PhD or DIT but I know the amount of computer use required so that plan is on indefinite hold. You know your body better than anyone. If computer use exacerbates your problems, then your body is trying to tell you something. The human body was designed for hunting and gathering, not sitting in a static position for hours on end. If you need to be on a computer, make sure that your setup is 100% ergonomic and be sure to take frequent breaks. You want to make sure that you take steps to manage your posture especially in the neck region. It's called Thoracic Outlet Syndrome but the major structures involved start in the neck. You should investigate all non-surgical avenues before entertaining any type of surgery. PT and massage made my problems worse but they may help in your situation. Everyone is wired differently. I am currently working with an upper cervical chiropractor who practices QSM3 and Atlas Orthogonal. They aren't frauds like the traditional snap crackle pop chiros out there. One of my problems post-op is numbness and pressure in my forehead as well as foggy brain that goes in and out. I am still in the honeymoon phase with this practitioner to see whether the adjustments help in the long run.

I've had TOS for >15 yrs and have worked nearly all of it. I work on computer all day. I also have CRPS in right (dom) arm. It is not easy by any means. I've had to take some breaks, but this is mostly b/c of CRPS flairs. I've wanted to keep working not just for the money, but also b/c I'm of generation that equates working with worth.

My right arm is purely decorative - I just use it to fill out my clothing. Now that my symptoms are becoming bilateral, I am more nervous though. It was easier when I had a good arm to stand on (HA!), but if the left one goes out, I've got nothing. If given the choice of dealing with not working or losing use of my one good arm, I'll learn to like daytime TV :)

As for whether to continue schooling, I'd say yes - though you might need to lengthen the time it takes you. I got masters in 3 years instead of 2 so I didn't have to do as much course work. What I've learned is essential for my health is good posture and proper ergo. The posture has to come from proper muscle balancing, not just forcing your shoulders back and head this way or that. Get to know a good physio and can teach you the right exercises. Stay with him/her for a long enough time to know if what was prescribed is working and then you can continue on your own, just getting a check in as needed. Also, buy the best ergo stuff, even if you have to skimp elsewhere.

Good luck.

Thanks Shagychic.I appreciate your response and you really motivated me to work.
I found a better option to work as corporate trainer for technology trainings to various corporate companies and this will have less computer work.I will go ahead and try this.Let see how this goes and again I will work only 8-10 days in a month and Will get enough money to make my expenses.

I'm working full time. It's a huge struggle. I have a desk job, in something similar to IT. Right side ntos. I just had a rib removed on the 4th.

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