Did u just have a rib resection??
U r at the beach already?
O my

i'm sorry the shoulder specialist didn't have better news for you, but glad you have his attention now and that he wants to delve further into things for you. does he know your whole TOS history? forgive me for asking, i just want to make sure they are not treating the TOS as somehow wholly separate from your shoulder injury... something tells me (and we all know, i ain't no doc!) that would be a mistake.

perhaps it is different in your country, and i certainly hope so. over here in the US, i can share with you that i have been to more hand surgeons, for example, than i want to tell you, to see about my poor atrophied hand. (well, today i know that it is the true neuro TOS causing that atrophy, but back then i did not...) not a single one of these highly specialized docs ever mentioned TOS as a possible cause of my longstanding nerve compression to me, barb. while they may have glanced at the EMG/NCV's i thought to bring with me to the consult(s), i don't believe any of them were comfortable looking any higher than my wrist, clinically! well, they did talk about releasing the cubital tunnel, so i guess in surgery (had i let them cut me!) they would have had to venture at least as high as the elbow... but since none could pinpoint exactly where the ulnar nerve was being compressed (elbow? nope! must be "somewhere" in the forearm...) we were not comfortable allowing any hand surgeon to butcher my arm up on a scavenger hunt "in the hope" that he could find something. yikes!!!

it's been my experience that doctors in general - and surgeons, in particular, have gotten so overspecialized in any given area that, unless your specific array of sx and pain complaints happens to fall neatly within the given box they are thinking inside of... well, sad to say but they are likely to either dismiss you out of hand as someone they can't possibly help, or to focus so narrowly on just a very tiny portion of your sx that do somehow pertain to their specialty - ignoring the rest - as to give you shoddy tx in the process.

the big picture is often missed by treating patients this way. again, this is only my experience, barbara and i know nothing of your situation... hopefully your shoulder specialist is fully versed in TOS and has all the information on your case pertaining to that syndrome as well, and understands fully how TOS could certainly impact on the health of the ligaments and tendons in your shoulder - or at the very least, is open-minded enough to learn about it.

i do get that it must be frustrating for these guys to have young patients coming back with "relapsed" surgeries like this... or even needing surgeries in the first place! something else is afoot that they haven't a clue how to sort out quite yet, methinks... you don't want to unwittingly end up anybody's guinea pig, though, barbara.

are there other options to regain ligament health besides more surgery? just thinking out loud here. you poor girl, you must be a bit frustrated... but it's good that your doc ordered the MR arthrography (sp?). hopefully, that is a more sophisticated imaging test and will be able to tell him much more clearly where the problem lies. keeps more options open that way. i'd get another doc to look at it too, which may be what you're already planning to do...

my money's on the cheese! just say you want to go back and live at the spa with the old-world remedies, refuse to come home til they make you all better!!!! OK, i took a group vote on this barb....

:mf:: partytime2:

don't unpack just yet!

if mark were here, he could say all of this in bad german to ya: hang in there, cowgirl, you've worked too hard for this all to be taken away from you now. it's just a momentary blip on the radar screen, maybe a sign to slow down and stay put if you can? it's a long, slow rehab for shoulder stuff, that much i do know, barb. so do go easy, make those top docs and PT's work hard, though, to help you to get better. we share your frustrations and your joys, right here. know you are doing the work... and then some! but it ain't over til it's over, so we never give up. your body wants to heal and the trick is to find a way to give it the right signals to get it back on the correct path so that it can do just that, right? human anatomy is an amazing, amazing machine.

ah! i am rambling here and haven't even had my morning coffee. your spirit is inspiring as always. we all learn from your experiences, dear barbara. let us know when you are able to get the test done and then what it shows, as it should be most interesting.

but be sure to also ask herr doctor in the meantime if there is anything in particular that he wants you to STOP doing, in terms of your ROM, PT exercises, all the tools in your toolbox that i know you have been fine-tuning these last few weeks especially and all along the process, breathing exercises, relaxation stuff, etc. SO important not to falter in your hard-fought routines now, just because some hot-shot surgeon saw something on a picture that he didn't like! am i right? as we said in the '60's... KEEP THE FAITH... and ROCK ON, ROCK STEADY...

hmmmmm. maybe if i drank the coffee BEFORE i started writing these posts they wouldn't end up so damned long. what do you guys think? i know you probably make fun of me behind my back! and i dont even have dragon naturally speaking - OMG - just imagine if i ever did get that software, none of you peeps would ever, ever be safe AGAIN. it would truly be over. just stick a fork in me, i'm done over.

did i mention i have ADD? yep, a whole dang strang of alphabet soup dx's... that's me!!! and, no one to talk to, really (ah! therein lies the rub!) - so the forum getz it!!!!

alison
"Be Brave"

beach= supreme relaxation

hubby is responsible for all the kids at this time which makes it MUCH easier.

that sand...molds to your shape and is SOOOOOO commfy to lay on.

warm sun= better than heating pad...since all over body experience.

so YES, i am at the beach!!!!

AlisonYou make me laugh! I enjoy reading your posts.

today I am having a bad day. Indavertently hitting keys while typing. Causing alot of backspacing. Hands very jumpy. Don't know why

JohannaEnjoy the beach. Labor Day here in NJ is one of the last opportunities for the beach. We have been spending time in pool and hot tub though which is great.

How frustrating your situation must be I've heard of meds causing problems with the achilles tendons but I don't know the specifics. I hope you get some answers soon. As long as you are going to have an MRA, why not ask them if they do or if they CAN do the protocol that either Dr Collins or Dr Werden does.

Here is the link for Werden at Raytel in SF, Ca.
http://www.tosmri.com/

Today I would like to nominate JohannaKat as the poster child for TOS rib resection surgery. Not only is she brave enough to have her 2nd surgery so closely following the first, but reports of grocery shopping and beach going during the first week post surgery! Not to mention her ability and capacity to stay in touch (by typing??). I've been such a fraidy cat to have the surgery myself, but after hearing your story Jokat I think I will sign up for mine tomorrow! Hope you continue to make such excellent progress!

I need another mri Marc...DH who I have sort of said get involoved or else....I can't live like this....song and dance..in a less fantastic tos sort of dance...

So he feels mri to see he thinks it is all in my neck at c3,4.5. I am in agreement since my surgery things have changed huge...more pain and more issues....so my last mri pre surgery was showing bulging disks in c 2 3 4 but

'I' think it is from my injury and the muscles and tendons are pulling my joints and my neck to such a degree...{lost so much weight had to go for a new bra fitting and the girl said my back and low right shoulder look like a scoliosis person's does and lost a cup size.... booo hoooo the girls are almost GONE}

anyhoooo sorry guys.....

I am thinking tos and disc issues are my problem....all the headaches and the neck issues are due to a combination of all of the issues put together.

who am I to diagnose myself......anyhow just a few thoughts as I sit here pondering my life and whrer it is going and what I am doing.....like nothing tired of no life, tired of no social life, tired of not even wanting to call my best friends.....tired of wanting to do things and not being able. Want to exercise want to hike, want to CLEAN want to have fun....can someone remind me how the hell we do this in this condition....

feeling horrid feeling down feeling like this is not worth the effort.

rant over
Victoira

God, Victoria, I feel the same way. Is it normal to lose weight from having TOS or a side effect of meds? I'm not complaining but I've lost over 20 lbs and people are starting to ask what has happened. I also needed new bras (also, sorry guys). But also no matter what I do my straps fall down. I'm sick of picking them up! I told my husband we have to make an effort to go out and do things. It's too easy to stay home. My kids are old enough, little one has built in babysitters. I look forward to laying in bed too much. I want to go out to dinner or a concert.

Kids are talking about making reservations for Disney and I don't even care. It's my favorite place and I can't find the excitement. Some day I will just make the reservations and be done with it.

but then that IS why I am HERE!!

I find for the strap issue....the girl at this exclusive bra store I went to...like 100- 250 dollar bras slightly over my disability budget esp. if the girls keep changing size..... so back to strap issue she did the cross over strip and with the right one really loose and the left one normal no slipage!!!!!!!!!!!! Worked well so I will do it with the TWO bra's I now have!!

Hope this helps!!

love an hugs,
Victoria

i don't mean to sound an alarm unnecessarily here, but my first reading of your post was that this could be putting you back to square ONE if you are not careful!!!

don't forget, the scalene muscles, although they are small, are quite powerful enough to not only cause the cervical discs to bulge but to completely reverse the normal cervical lordosis. mine, in fact, has become kyphotic at this late stage... and this is all a part of my TOS. nothing more, nothing less.

i went to a prominent PM doc last summer, who specializes in the tx of RSD and FMS among other things, and has quite an impressive academic background to boot. one of the first questions he asked me was "have they ruled out cervical issues"? this, after showing him my end-stage hand atrophy and the rib-resection surgical report from my top TOS doc in denver (!) among other TOS-related medical records i had brought with me, including MRI/MRA's he didn't bother to view... i was so taken aback that i was speechless (yes, moi, shut up kidz!)!

when dr. annest opened me up, he found my scalenes to be very enlarged, and not only cervical bands indenting my C-8/T-1 nerves in a very unusual formation, but to make matters worse, a big old honkin' extra cervical artery transversing my BP, complicating things further. that "dent" had been there at that point for over 30 years in my T-1 nerve, thanks to all those "non-believing" cervical docs! damn near lost all function in my left hand. grrrrr

and here i had been to countless "top" L.A. docs for over 30 years seeking relief for my severe 'neck pain' before finally getting the TOS dx from dr. ahn and heading to denver shortly after that...

just how OUT did this PM doc want the "cervical issues" to be ruled, i wonder? yes, i have bulging cervical discs (several of them), yes i have complete reversal of the normal cervical lordosis, and yes i even have foraminal stenosis. but NONE of this ever even remotely explained the amount of PAIN i "claimed" to be in, according to the high-profile surgeons and PM docs i saw over those decades it took me to find my way to dr. ahn's office. the neurovascular injury was IN the BP, people! NOT in the cervical spine, nor in the cervical facet joints or whatever!!! thank god none of those surgeons i saw were ever willing to operate on me; "too many levels of involvement," they would say, or "no clear place to go in and guarantee you any kind of relief..." (read: or to make ME look good with a successful outcome!)

nor did it begin to cover WHY my hand was wasting away as the years rolled by... that, my very conservative neurologist said, was due to "ulnar neuropathy" of some sort. very vague, so unhelpful - a completely separate dx - which they never, ever put together with the neck pain. i was told that i must have really whacked my funny bone to have done so much damage to that ulnar nerve. seems like i would have REMEMBERED doing something like that to myself, but nooooooooooo.

TOS can and does mimic so many other disorders, victoria as you are so painfully aware. i think you hit it right on the head when you questioned the wisdom of trying to dx yourself... and with all due respect to your DH i'm sure you would not want to put him in that position, either.

a normal cervical MRI of your cervical spine is not going to show you very much at all, as you well know, if indeed your neck sx are coming from your TOS. what you would need is something like what is offered at: www.tosmri.com. or dr. jordan here in L.A. does a duplex color ultrasound which johanna has posted about which you might find useful, in connection with some of the blocks he performs and so forth.

sorry, but this very issue is what led my own docs so far down the garden path for a quarter of a F'ing century, no less!, that i just hate to see anyone else lose valuable time and money chasing paper dragons when there really is no need. there are some fairly reliable clinical tests to rule out cervical ridiculopathy which perhaps could validate what i'm trying to articulate here (and not very gracefully, i might add...). dr. werner talks about this on his site, too, if i'm not mistaken...

hey, maybe when you come down to L.A. we could explore this together! i need some pretty new pix myself!

alison
"Be Brave"