[paperbag]

I am 38, male, live in Chicago Illinois. I was just diagnosed with TOS last week.
The first symptom I can remember was a lightning bolt like pain going down my arm when throwing a baseball, around age 18. Had trouble raising my arms above my head, because they would go numb. But at that time, I was very active, lifted weights, was very physically fit, so TOS was not affecting me.

I became housebound at age 18 due to depression. Around the time I was 23, I was using the computer about 10 hours a day in a recliner chair that put me in a hunched position. I could feel intense pain in my anterior left shoulder the second I sat down, yet I continued to sit in that chair for 10 hours a day, because I was mostly still housebound, and had no human contact other than my computer. I would sit at the computer with my left arm behind my back to stretch the anterior left shoulder to relieve the pain.

Around 25 I started to go to college, and got some physical therapy. That pattern would repeat itself over and over. I kept getting referred to physical therapy, and they would tell me the same thing. My scapular stabilizers were weak. My chest muscles were too tight. They would give me exercises to do to strengthen my lower trapezius and serratus anterior muscles, and I could never do them, because the pain in my left shoulder would get unbearable.

At age 28 I finally had an acromioplasty. The pain in my anterior left shoulder went away. However, it simply moved to the inferior angle of my left scapula (the bottom pointy tip of my left shoulder blade).

So then again on the roller coaster of physical therapy for my left scapula. I have been given the same exercises over and over, tried physical therapy. I couldn't do any of the exercises because it would cause too much pain in my left scapula.

Finally, my primary care doctor too pity on me this summer and gave me a referral to an orthopedic surgeon. She diagnosed me as having TOS. She gave me a referral to physical therapy (of course), but also a referral to a physiatrist to do ultrasound-guided steroid injections for the brachial nerves. She also prescribed me a medrol dose pack to take during physical therapy. She said if none of that worked, I could try surgery, but she did not do that type of surgery. She said it would have to be a thoracic surgeon, which she is not.

Right now, I'm housebound again due to depression. I plan to start physical therapy as soon as possible. I know they won't let me progress to surgery unless I jump through the physical therapy hoop. Also, I think the ultrasound guided steroid injection might help, as I had another nerve condition last year (meralgia paresthetica), and had an ultrasound guided steroid injection for that, and it really helped. But I only had meralgia paresthetica for 2 months, so I could see how something less drastic than surgery could heal it. With my TOS, I think I've had it for years, and don't know if a steroid injection around the inflamed nerves would help at this point. It might. I just have a gut feeling that the only "cure" is surgery.

I just started reading this forum today, referred by a friend from the meralgia paresthetica forum on this board. I am glad to see there are surgical success stories.

Anyway, I've written a lot. I'm wonder, is there anything I can do for myself now while I'm housbound? Now that I know that I have TOS, are there any stretches or exercises I can try to do for the next few weeks until I am no longer housebound and can go to true physical therapy? I still sit at my laptop pretty much all day everyday, because I have sort of a part time job working for a friend who does web design. I try to make sure my posture is good when working at the computer, but it's hard.

Anyway, I live in a suburb of Chicago. If anyone wants to contact me by pm, or just reply to this post, please do. I am so alone, and really need support. I know that I was greatly helped by another person on the meralgia paresthetica forum when I was going through that illness in December/January. Support from another person who has the same pain that we do is so essential to me.

I am glad to have found this board. I hope someone doesn't mind reading through my long post. Sorry, I just have so much pent up sadness, it all comes out.

[Jomar]

If PT mainly focused on strengthening that might be part of the problem - but for now these things linked below might be very helpful to start letting the shoulders drop back using gravity and not muscles.-
http://neurotalk.psychcentral.com/album.php?albumid=422

perhaps expert chiropractic care might be worth checking into.
One that uses pain relieving modalities along with adjusting..

[paperbag]

Yes, I find that PT always focused on strengthening, almost like they did not want to work, to do any stretches where they have to work to assist you. They just wanted me to keep doing strengthening exercises while they did something else...like eat pizza, or sign their mortgage papers (not kidding). It is so hard to find a good PT. But the assisted stretching exercises seemed to help the most. I think it's called passive range of motion? Where the PT moves your arms around and stretches them? That's the best for me, the few times I've been lucky and a PT did it.

Those pictures you posted are pretty interesting. I have a half foam roller. I don't have a rubber exercise ball to lay back on, but I do have an exercise bench, and I can lay on that and let my arms hang down to the side. Do you think it's worth buying one of those big rubber exercise balls to lay on?

I tried chiropractic at a chiropractic teaching college for almost a full year, all of 2013, and it did nothing for me.

[Jomar]

oh and look at our sticky threads too, so much saved info there..
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread84.html


anything that works for you to lay on and doesn't make symptoms worse ...
rolled towels /blanket etc...

try to be as ergonomic as you can if you must work on laptop.. do you have external keyboard/mouse for more flexible arm positions?
we just got a nice adjustable laptop stand for on coffee table so we don't have to hunch over so much..

[Eight]

Um, not sure where to start. Don't use the computer ten hours per day because you don't have to and that will make things worse.


Try stretching your pec minor, like in a doorframe.

Work on strengthening your rhomboids and lower trap. Do wall push-ups for this, something like 10 reps and ten sets per day.

Get that big ball and dangle your arms off it, that stretch will feel good.

Walk, a lot. It improves circulation. Outside during the day to help with the depression, even if it's just around the block to start with.

You need a vascular surgeon or thoracic surgeon.

See about getting botox injections in the pec minor and anterior scalene muscles.

[Jomar]

I would only go to advanced /expert PTs /DCs... not rookies..or DCs in training they just don't have the overall knowledge that is needed.
Some are truly healers and some just do the cracking..

My chiro used PT modalities & had extra training in many things.. (ultrasound, low level laser, IF stim, nimmo, etc) as well as adjustments and the c1/c2 upper cervical adjustment, also called atlas /axis, and elbow, shoulder, wrist etc...
I did a lot of things on my own as well as some regular PT (work comp) and then found an advanced PT that dropped my top ribs down when they had got stuck up due to severe spasms.
Also self trigger point w/ tennis ball
Sharon Butler - gentle stretches & fascia information - www.selfcare4rsi.com
overall posture work- Alexander etc..

[paperbag]

Hi,
Ok, I did order a rubber exercise ball, like in the picture that Jo*mar posted.
It was $25 from Amazon. I should get it tomorrow.

Are you sure wall push-ups are ok? I thought those would strengthen/tighten the pectoralis minor? Any kind of pushing exercises, actually, I thought would be not recommended?

I did look at the selfcare4rsi page, but her book costs $97. There's no preview or anything, so I don't know if it's worth it. $97 is a lot of money for me. I would gladly pay it to ease my TOS, but that website looks....not very professional.

I understand the concept of botox injections, paralyzing the muscle, preventing it from tightening around the brachial plexus. Is that a new treatment? Is it controversial? Do you think most doctors would know of it?

There is so much information in here it's a bit overwhelming. I have an appointment to start PT, but not until December.
You are right about the quality of PTs or chiropractors mattering a whole lot. I went to a chiropractic teaching college pretty much the whole year of 2013, and had no improvement. I didn't have any insurance, so I had to go to the free student clinic. The students were sort of on to the fact that I had symptoms of TOS, but they just didn't have enough knowledge. I have medicare/medicaid now so it makes finding a PT easier.

[kellysf]

Welcome, Paperbag,

I would echo what Eight said. Try, really try, to limit your computer time. I know it's hard, especially when works requires it. It's especially hard if you're already feeling isolated. But I've found it to be the worst thing for me.

Take care,
Kelly

[Jomar]

Sharon Butler has many articles worth reading on her site, you don't really need to buy anything. Her RSI book is in most libraries, and it does explain about the role of fascia & injuries , and why very gentle stretching is best for damaged tissues.

But I did need more expert hands on therapy by the time I got so injured that I couldn't work and my fine finger coordination totally stopped for a few weeks..

Wall push ups didn't help for me.. high door way work not good for me.
low arms behind and doorway was OK for me..

I guess it is try something and see if it helps or , makes worse, then take the helpful stuff and drop the not helpful fast..
That's how most of us figure some of it out.. try a little bit and see how it goes for you..

One main thing is do not push thru pain , stop before any pain starts, like baby steps..

* But trigger point work can/will be painful, that is one case where to fully release the knot you have to press right on the sore spot..

[Sea Pines 50]

There is a DC in Chicago who has a specific TOS protocol and claims to have had great success with his txs. His name is James (I think) STOXEN. If I were in your area, I would beat a path to his door! The man is very knowledgable about TOS.

Use the forum search function (see the top right section of the page) to pull up posts and threads about this guy. One has a link to a video presentation he gave, which contains a lot of info about this theories and practices in txing TOS patients. Mind you, he is not the greatest public speaker I've ever heard, but the content of his presentation is very interesting.

You may not need a PT if you do go to Dr. Stoxen, as he uses many modalities that a good TOS PT would employ. If you decide to stick with PT, though, be aware that you'll really need to find one who is very experienced with TOS. The "normal" PT approach of "no pain, no gain" - we call it "shake & bake" PT - not only won't work for a TOSer, it can be very harmful. TOS-savvy PTs can be difficult to locate, but they're out there.

Start reading through some of the links Jo has provided for you. Knowledge is power! And please keep an open mind with respect to nonsurgical, noninvasive TOS remedies. Don't get your heart or mind set on having TOS surgery before you have explored more options and done the work. Surgery can leave you worse off than you were before. It's risky on multiple levels, and is not a "cure," by any means. You'd still have to do extensive and specialized PT post-operatively, if a good recovery is in your sights. Many of us develop breathing and stretching programs to do at home after we've gotten what we could out of PT. It's a lifelong thang!

Dr. Stoxen has successfully txed hundreds of TOSers, and not one of them has required TOS surgery to-date. Check him out for us, will you? No hidden agenda here, but I know that several of us would be very interested in following your progress with this guy. If you have good results, well be prepared for a lot of out-of-town house guests (JK!).

Keep posting and letting us know how you're doing, OK? If you have questions or concerns as you go along, please don't hesitate to ask! We are here to help.

Hope you are feeling better.

Alison