So about a year ago I had my first rib removed because of TOS and have started to have some problems as of the last couple of months. Before surgery I had complete lose of feeling of my arm and for long periods of time, lose of blood flow and swelling and discoloration. Today while driving I have had my worst case of it again. I lost total feeling of my arm and had some swelling and discoloration and lost feeling for hours and still have not gotten feeling back completely. I am wondering if anyone else has had this problem because I am starting to worry about what I should do. I don't think that my problems should be that bog of a deal and am wondering if anyone else has had problems. I need to make an appointment with my doctor that did the surgery but untill then could anyone help me out that would be great because I am starting to worry!

Hello and welcome,
Sometimes the sx will come back due to scar tissue causing problems or if you returned to the same habits and activites that may have caused TOS to occur.

Have you had any TOS PT or posture therapies?
Or have you been trying any self care to help stop the return of symptoms?

here are the links to our dr list & some PTs also our useful links for TOS
http://neurotalk.psychcentral.com/showthread.php?t=135
http://neurotalk.psychcentral.com/showthread.php?t=84

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

Thank you for the 2 posts so far they were very nice to read. I am still experiencing some of the problems as of right now but not as bad. I had someone ask me what area of the country I am in and I love in Iowa. My doctor is Dr Sharp at the University of Iowa. This is all just very odd to me to being having these problems again. The activity that caused TOS was swimming and I have now cut back a ton since I have now graduated from college and am no longer swimming for Iowa State. Also once they did my surgery they found out that my first and second ribs were fused together and to do the surgery they broke them apart and then removed my first rib. I am just wondering abot everything and a little worried at this point. Thanks for the messages and please keep responding because I like to read them.

w/o reading carefully above me, I would point out that it takes 18mo/2yrs for the scar tissue to completely form, or solidify or whatever it does, and that many failures come on in that 18-24 mo window.

There are things that can be done. My doctor once mentioned some sort of internal drug that helps to dissolve scar tissue, but i don't remember what it is called. Also, there is the possibility of a redo surgery which may or may not be helpful depnding on how prone to scar tissue you are. You rdoctor will eb a good guide, here.

good luck to you and sorry your symtoms are reappearing. I just had surgery myself, and I am not looking forward to this long time period to kow if it has really helped.

Johanna

I just thought I would give you and update! I called my doctor today and I am going tomorrow because my right hand is much colder than my left and his Nurse Sandy said that was not a good thing and wanted to see me as soon as possible!

thanks for the update...

what is your name, by the way? or should we just call you mac?...

i sent you a couple of PM's, mac! check your private messages (it's in the upper righthand corner underneath the welcome, login, last visited date/time stuff - see it?)

glub glub glub





alison

i vote for mac.

just my 2 cents. nothing terribly constructive to add.

seriously tho Mac..... take it easy, and I hope that you feel better soon.

I am very sorry that it has been so long since my last post. But since my last post I have had yet another MRI on my neck and a neurosurgean has told me that he sees nothing wrong with my neck and that he sees nothing that should be contributing to my problems and symtoms that I am experiences. I went to this doctor because my doctor wanted to double check my neck area and if there was anything causing this problem. Well there was nothing and now November 1st I am going back to Iowa City to see Dr. Sharp and hopefully he will be able to tell me something because I really just starting to feel like no one knows what is wrong with me. Go figure that seems to be a trend, no one ever knows. I am hoping that at some point I will be able to be active again because as of right now I am not being premitted to do anything.

Mac, are either of these Dr's vascular specialists? sounds like there may be a vein/artery that gets 'kinked'? or a clot?

good luck to you - hope someone discovers what this is!

Anne