Hi, Sorry for the reason you are here, but glad you found the site. It is by far the most information and support for TOSers' you can find!

I'm sure others will come along with more info, but I will tell you what I can, hope it helps.

1. Chronic headaches are a common symptom. If you feel along the top of your shoulder blade (trapezius muscle) and along the c-spine, you will likely find small hard knots under the skin that are incredibly painful when pressed on. These are trigger points, chronic spasms caused by irritation and inflammation. The spasms place tension on the underlying nerves, incuding not only the brachial plexus nerve roots but also the nerves that originate from the cervical plexus. So many of us have ringing in the ears, jaw and face pain, blurred vision, etc.

Massage can release the trigger points temporarily, trigger point injections will give longer relief, but they seem to be a fact of life with TOS for many. Practicing correct posture (head back over shoulders, shoulders straight, not rounded, shoulder blades "pinched" towards each other), purposefully taking time-outs to relax during the day, massages, and learning to avoid activities that cause headache ( and triggerpoint) flare-ups can help reduce the frquency and make things more manageable.

2. Possibly optic nerve is being irritated/compressed, maybe due to trigger points (#1)? How is your vision being affected? In my case it was focus - small print became blurry, and it gets much worse as the day goes on. Prior to TOS my vision was 20/30, no problems at all. If trigger point injections don't do anything for the vision, a scalene block might show if the scalenes are responsible?

3. Can't help with this.

4. It took me about 5-6 weeks to start feeling like I was ready to function on most levels again, driving, doing errands, light housework - my "normal" routine. Most surgeons I have spoken with or whose articles I have read seem to agree it takes about a full year for full recovery to take place - for all the healing that needs to occur inside the body, especially the nerves.

5. You will find a wide variety of opinions on this. Many Drs don't believe in neurogenic TOS still to this day, unless there are positive EMG findings, and possibly hand atrophy. There are others who see a great many cases of neurogenic TOS and have a good understanding of it. It helps if you can see one of these Drs. I have seen many different stats given as well. My feeling is that if conservative treatment options have been given honest attempts without signs of progress, or with progressive worsening of sx, then the sooner you free the trapped nerves, the better the outcome is likely to be. Of course, I would want to find a surgeon who was experienced, highly recommended, and whose approach I felt comfortable with. I do know of some people who have fully recovered. One works as a massage therapist. The only activities she avoids are painting overhead and carrying heavy suitcases. There are no guarantees though - some see 50%-80% improvement, some see little or none, some are worse. So much is dependent on the individual - the cause of the TOS, co-existing health problems, how long they've had TOS, how their body makes "scar tissue", depression, etc.

I do think the more physically fit you are, the better your recovery may be - and because you have been so physically active this may be in your favor. I would urge you not to do any weight training or any exercises that strengthens the pecs or other chest muscles, if you're still able to do any. The muscles that need strengthened are the scapular stabilizers, the rhomboids and other back muscles that are no longer doing their work to keep the head and shoulders in proper position. The pecs are doing the job instead, and are overworked and tight. If your PT can work on loosening the pecs it would be helpful as this is often a major problem area.

I was told post-op to just feed, dress and groom myself for the next 4-6 weeks, that's it. I could try driving around the block at 3 weeks, to see how comfortable I felt when I stepped on the brakes - was definitely still a little tender under the arm!

Hope you get the answers you need! Post-op PT is a BIG part of recovery, sounds like you might have that piece covered.

Nice to meet you,
beth