it is so frustrating when this happens; i know from personal experience what that is like and i feel for you. is there any way you can get in to see a neurologist or, better still, a good, TOS-savvy PT or even a chiro who knows TOS before your surgeon is able to clear his or her schedule and examine you?

the good news is, your sx sound vascular to me, and as i'm sure you know, your chances of a successful outcome from the TOS surgery which you've had are much, much higher than they are for someone with a case of primarily neurogenic TOS or even neurovascular TOS. that is just the way it is.

and the fact that some of your worst sx are returning, indicating vascular compression (i think, anyway... obviously i'm not an MD) is occuring, does not necessarily mean that you need to have a complete scalenectomy (i.e., a "re-do") now, although it might...

but there are other things besides bony (or "osseous") structures in the thoracic outlet pressing up against things they shouldn't that can cause this type of severe compression of the vascular (veins and arteries) and nervous systems coursing through that tiny anatomic area in our bodies, micswims.

the scalene muscles are often the culprits. they are small, but extremely powerful respiratory muscles, and engage every single time you take a breath! and even though, obviously, both your anterior and middle scalene muscles had to be partially resected in order to remove that first thoracic rib with the preliminary TOS surgery, you may have PLENTY of scalenes left in there to wreak havoc, my friend. the supraclavicular and the pec minor muscles are the other typical suspects, just FYI... (as i'm sure ya know already!)

in my own case for example, the cut end of my anterior scalene muscle has decided for some reason that it would be a brilliant idea to reattach itself by scar matter to the subclavian vein as well as to the pleura (). it is now, as we speak, attempting to drag these "soft" structures up the cervical spine as it atrophies... (the middle scalene was surgically reattached by dr. annest, or it would likely be doing the same kind of nonsense, i have no doubt!) adhesions are the enemy of every TOS'er! so say i, anyhow... and you do NOT have to have had the surgery to have adhesions. that is the hell of it.

how delightful, right? causes me no end of problems with my left arm and hand (for that is my surgical side, micswims), and i don't even want to talk about the neck, shoulder and head pain. but i am working with a PT and an OT to address those sx, as at the present time i am not able to consider having a re-do. however, vascular sx are NOTHING TO FOOL AROUND WITH and i would advise you to call someone ASAP. do it, do it now. please!!!

i will, no doubt, have to go ahead and get a complete L scalenectomy done in the near future in order to save my hand, which is much like my mind, quite wasted at this point (i have true neurogenic TOS). and you may be a candidate for more TOS surgery as well, that i cannot say and i don't want you to misunderstand me. (see above, make that call!)

we are none of us qualified to give out medical advice on this site. even if we had alphabet soup after our names, we could not dispense any meaningful consult in that department, because you need to see some docs face to face! and with the sx you are having, you are right to be alarmed, i would be too...

just saying, don't panic. hopefully, some excellent physical therapy, occupational therapy, bodywork (hellerwork, feldenkrais, alexander technique, muscle activation technique, etc.), the right meds, ice, ice, baby, diaphragmatic breathing, etc. could help abate your sx and calm things down considerably.

there are a few diagnostic tests out there which could tell your surgeon what he or she is going to want to know, too. so perhaps even if their schedule is looking booked, ask about what testing is going to be needed, see if you can get that done in the interim and you will be ahead of the game. also ask for an rx to get into PT right away but be very, very careful that it is someone who knows NOT TO HURT YOU and has the right protocol for a TOS'er. nothing should increase your sx or cause you more pain or discomfort. ultrasound only and hydrocollators may even be the order of the day with someone like you; i simply do not know. but you do need help.

i know it's hard to ask for that help, but ask you must! HELP! it is out there. what part of the country are you in? maybe we can help you find someone! ya never know, kid, ya just never know... we may be good for something yet!

we can talk more about PT if you decide to join us. i hope that you do! we need you here. there is a pretty recent thread in the "drs and PT's" sticky up top which you may find informative; it was written by a poster named 'johannakat'...

also, if you play around with the 'search' function in the upper righthand portion of your screen you can enter key words and call up threads on almost any topic you can think of re TOS, including PT, the type of bodywork you're into, meds, vascular sx, etc. if you'd like to try that, or you can use the 'advanced search' aspect by entering a particular poster's name, too.

if you don't happen to have a good neurologist, or a good PM (pain management) doc, i would strongly urge you to seek out those two types of specialists immediately if not sooner! just be sure that each has a decent track record of treating TOS cases before signing on with their practice. TOS is still a controversial area of medicine (i have a way of stating the obvious, so bear with me for a moment...), and even in cases like yours and mine, where the sx are objective and visible it is still possible in this day and age to end up with a doc who will ignore your most telling sx and call a duck an ostrich! (and act rather like the latter, i might add... )



alison