Thanks for the Dr Donahue recommendations. I will be making an appointment with him. Would anyone happen to know if he will operate even if all imaging results are negative or will he operate if a physical exam shows positive for TOS? The reason I ask is because his next appointment is 3 months away and I wouldn't want to waste the visit if there wasn't the possibility of surgery since all my tests have been negative.

I've done PT for 6 weeks and this included intense TOS tissue work. Also seen an osteopath for a month. Nothing helped in 5 he slightest amount so I think the conservative route has been exhausted for me.

Your Questions
 

The neurosurgeon you just saw wants the MRI of the brachial plexus to rule out a Pancoast tumor (one possible cause of TOS); the CT scan of your neck I'm guessing will be used to rule out cervical spine issues as the cause of your sx. As every surgeon has his or her own specialized tests and favorite labs, etc., if you do go with Dr. Donahoe (which I think is a great choice!) you may want to ask what tests he will be ordering, and/or whether you should wait and have these tests done closer to your appointment with him. This way you can avoid duplication and the risk of Dr. D. not considering any test results you bring him because they're either dated or not done in a facility he uses.

I really feel for you with your sleep issues. How is your pain being managed? Do you have a pain specialist working with you yet? Long- and short-acting narcotic pain meds, an anti-convulsant med (for nerve pain) and/or an antidepressant, plus elavil for sleep, etc. could all be helpful in your case. If your pain is not being managed effectively it can seriously interfere with your ability both to fall asleep and to stay asleep. In fact, there have been studies that show that "normal" people who are exposed to sleep deprivation almost immediately start to suffer from FMS sx - including a lot of muscular aches and pains.

As far as your getting permanent relief from your neck pain, I wish I could tell you I have an answer but I don't. I've had constant neck pain for most of my adult life (which was misdx'd for decades). I do find that a cold pack on the upper part of my neck with a hot pack (moist heat) on my upper back helps. The right kind of PT can help and so can bodywork. In my case, though, it took almost 30 years to get a correct dx (neuro TOS), by which time the pain signal had become "hardwired" into my CNS (central sensitization). So even though I've had TOS surgery, it did not do much to alleviate my neck pain. Hopefully, that will not be the case with you. But certainly there are no guarantees that TOS surgery will completely "fix" your neck pain. And I don't think it's odd at all that you still have sx even when sleeping on your back. Keep chasing the right pillow for you, though. It's out there!

By the way, neither TOS nor pec minor syndrome is particularly rare. I would run from any doc who tells you this! What is rare is being able to find docs who truly understand the good, the bad and the ugly about the TOS monster.

You will be in excellent hands with Dr. D. However, you should be prepared that he's probably going to want to try less invasive measures with you before agreeing to perform surgery. Like botox injections into your anterior scalene and pec minor muscles. (A positive reaction to which can be an indicator for surgery and will also help to confirm your dx.)

He's also likely to want you in (skilled, TOS) PT for at least 6 months before you go up on his table. 6 weeks is not near enough time to write PT off just yet, in my opinion. And TOS surgery should always be your very last resort.

Most of the top TOS docs cite upwards of a 70% success rate in their surgical practice. Keep in mind that this stat can be way inflated depending on what type of TOS their surgical patients had. For example, if your TOS is vascular you have a much better shot at a successful surgery and a good recovery. If yours is a neuro case, the odds can go down considerably.

I understand how frustrated and impatient you are to start getting some real answers and an effective tx plan. Hang in there and get yourself a good pain management physician in the interim. You won't be sorry!