Hi, I've had TOS since 2003. I had my surgeries with Dr. Donahue in Boston. He did my surgeries when nobody else would. I'm still recovering from the surgeries and get disability. Right now I'm doing everything I can to "heal". I highly recommend him as a surgeon, he seems to take on the "difficult" cases that nobody else is willing to risk and he and his nurse are extremely nice! Plus, Boston is a beautiful city.

Surgically, it seems that you could still have a right side pectoralis minor release and anterior and middle scalenectomies. Plus you could also have scar tissue removed from the the bracial plexus/nerve roots. So more surgery seems like it definitely could be an option for you.

On the left side, the nerve pain sounds like it is likely damage to the Long Thoracic Nerve, but also because certain activities aggravate it, that you still have some compression going on, so surgically they could do some things to give you further relief/reduce compression.

The anterior scalene, middle scalene, and top rib form a triangle that the brachail plexus nerves run through. If the triangle is too small because the scalenes are tight, then the nerves are compressed and this causes the pain. Then, the nerves also run under the pec minor and that is another place of possible compression.

Here are some things that I think might help in the mean time to help with the pain or possibly instead of having more surgery:

1. This is the easiest. Get a 4" cervical collar (order off amazon) and wear it at night. It will help stretch out the scalenes and give you more room in your toracic outlet.

2. Take some aspercream and rub it on the sides and front of your neck at night. Then place a heating pad for a while under the cervical collar to further stretch/relax the scalenes. Also, hot bath with clove essential oil (antiinflamitory) and epsom salt followed by massaging mustard oil into the neck to relax the scalenes. Stretch your neck several times a day all the way around in a circle.

3. See if your doctor will prescribe you a TENS unit for home and also if your insurance will pay for it. I have an EMPI TENS unit. Daily use really helps with the nerve pain. Incidently, my nerve pain is worst in my left arm too. About 20 minutes a day really helps if I am disciplined enough to do this.

4. Exercise in a warm water pool - if you live near one, this is a lifesaver for me.

5. Muscle Relaxer Medications - I've taken Zanaflex but didn't like it that much. I now take Soma, 350 mg up to 4 times a day. This medicine is great, but doctors don't like to prescribe it because it is addictive and some people abuse it (by abuse I mean they take 8 pills along with a couple hydrocodone, crazy people that want to die) Flexeril is also a good one, but only at night because it makes you really sleepy, also it makes your memory not that great.... Skelaxin is a great one that I take up to a couple of times a day it, it doesn't mess with your brain at all (though I don't recommend taking it with gabapentin because it slurred my speech even though my mind was clear, people thought I was drunk a lot).

6. Nerve Pain Medicaiton - I've never had much luck with these. Gabapentin works the best as far as nerve pain goes, literally it made my nerve pain go away completely, but each time I took it I also gain 60 pounds, so I am not willing to take it. Perhaps you could try Lyria at a higher dose? Also, another option is Keppra - I had some success with this, but I was taking another med that didn't go well with it. I did lose weight on the Keppra though, so that was a plus for me. I see a neurologist for the nerve pain medication and the muscle relaxers.

7. Botox in the anterior and middle scalene and right pec minor - a non surgical option if you can find someone in your area that does the ultrasound guided botox. I would recommend this before deciding on surgery, because it gives you a good idea of what muscles are actually causing the TOS and what they should be removing during the surgery.

Also, I take Tylenol Arthritis 3 x daily along with Tramadol XR 200 mg, it seems to make this medication more effective.


Don't give up, there are many more options out there for you!!! Keep on fighting!!