Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 02-23-2009, 09:38 PM #1
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52 yr old female. i was diagnosed w/ tos 2 yrs following bilateral mild carpal tunnel. i have been in 3 major car wrecks and had 4 major falls. doctors disagree on diagnosis. i was scheduled for right rib resection w/ sympathectomy w/ dr urschell and i got other opinions that i don't have tos or it is quite a minor case. i had no warm fuzzy feeling and cancelled. i manage quite well with no surgery. now i also have a healing break in left humerus and a labrum partially torn. the left side feels much better than the right. i have had 3 whiplashes, 2 rib contusions, a rotated pelvis, cartilege damage in right thumb, left elbow broken, left pinky broken, and the left humorus was actually broken twice. also hysterectomy (total) and mild osteopenia. i also have sprained the right ankle about a dozen times and broken it once.
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Old 04-13-2009, 09:56 AM #2
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Hi all, my name is Michael and im 20 and was diagnosed with bilateral TOS at age 18 from a lifting injury/aggravations.. i just tried to post a new thread on my recovery, but ill repost it here incase it doesn't go through.. hope some of this info helps yall, it has helped me a TON..



Hi all, just want to share some things that helped me after being diagnosed with TOS -- whether i REALLY had or not, im not 100% but several therapists/orthos claimed it as well as an ultrasound confirming certain arteries losing blood flow when i raised my arms).. i also was misdiagnosed with having bilateral cubital tunnel syndrome and even got an ulnar nerve transposition in my left arm, which did little to help..

i went to PT for 2 years, had 1 surgery, masage therapy, as well as some other treatments which all helped to an extent, but ill share what REALLY has helped..

one other thing, i was lifting a ton before i really became unable to do things because of severe pain/numbness/weakness in pretty much all upper extremities, especially on the left.. however, as I stopped lifting (having to) and i got in worse and worse shape, my condition worsened contrary to what many as well as myself would believe.. i believe this is because of postural reasons(???) as most PT/recovery treatments influence strengthening to keep the postures/nerves/etc supported

anyway, i was introduced to something called Active Release Techniques (active release dot com) (aka ART) from a friend who receives it weekly (he is a D-1 athlete) for various injuries.. i really wasnt too optimistic of it working as nothing as, but this chiropractor who is certified in ART did more for me in TEN MINUTES (i swear to God, 10minutes) than 2 years of PT/Massage/surgery/etc.

what he did was relax (i guess is the word?) my scalenes with his hand(above the collar bone), altered my head/neck in several set directions each time, then glided the median/ulnar/radial nerves through with 3 different movements(they wouldnt glide without him relaxing the scalenes) and then did a number of "techniques" on my SCM/neck/subscap/forearm/wrist/and some other upper extremities which seems to keep the nerves freed up everywhere they pass through and eliminates scar tissue which can pinch/trap them.. i visited back every other day (or maybe every 2 others, i forget) for about 7-8 days, each time feeling significantly better and the nerves gliding with less and less of him altering soft-tissue/muscles.. i now go back every other week for this injury among others..

anyway along with ART, i learned several other things to do/not do to alleviate pain/nerve irritation..

-IF you get ART like i did/am, STOP doing those PT nerve stretches that invlove HOLDING the stretch for a number of seconds.. just simply emulate the 3 stretches the ART chiropractor/trainer/etc uses (they are pretty similar to the PT ones) but do NOT hold them-maybe for a second or 3, just do the movements.. i realized holding them for 10+seconds or so provided instant relief, but long-term irritation.. just doing them for 1-3 secs provided the same relief without really overdoing and damaging the nerve.. however ART did NOT completely fix my problem but these things have helped a TON along with it..

-muscle stretching.. you guys know all these.. dont overdo them though.. scalenes/scm/deltoids/tris/traps/forearms/lats/lat-tri attachment/subscap,chest etc.. stretching is very important, especially before/after strengthening

-next.. STRENGTHENING is KEY.. i went to john hopkins and they told me NOT to strengthen, their top vascular surgeon told me this.. she claimed my build was too small in comparison to my scalenese or something and that i should never ever do chest(bench press,etc) again.. this couldnt be more off.. every single time i work out, i feel ultimately more improved over the next couple of days after soreness subsides.. you def want to start out slow (and dont start to strengthen till a few weeks after your initial ART appointments so the nerves can heal a bit/reduce irritation).. strengthening of chest/delts/upper and lower back/tris have helped so much.. your posture is so much better when you sit in a chair or sleep or anything, i no longer get that instant muscle tightness/pain and nerve irritation when in certain postures like i did before (as well as the 24/7 shoulder/hand/arm/even facial pain i had before ART/strengthening/etc)

i really dont know why all these docs say not to strengthen, like i said the vascular at hopkins as well as DR. Richard Sanders (who i saw mentioned on here, who i talked to on the phone) were completely against any strengtherning - though PT DID influence it

-sleeping.. never ever sleep on your stomach, you all probably know this already.. i also got into a habit before i improved of using a neck pillow or no pillow because it was less painful.. again if you choose my route and get ART/strengthen/etc.. continue to sleep on your back, but with a neutral pillow as a neckpillow/no pillow tightened my SCM/neck very bad.. you also dont want to use too high of a pillow.. your neck should be neutral.. i recently started to sleep on my side sometimes again for the first time in like 2 years and i find it helpful to hug a pillow, it also will prevent (or it does for me) rolling onto your stomach

again, im not 100%, but i am 90000000x better than i was just a few months ago from everything i have posted.. i no longer have numbness/weakness/tingling, no constant pain in shoulders/upper extremities.. my traps are no longer completely knotted/tighted up.. my face/ears no longer feel beyond tight/knotted up.. headaches/lack of sleep/increased symptoms at night - significantly reduced.. chest feels loose, everything is just night and day

Im not trying to advertise ART, I just felt so hopeless/depressed and i know what some of you are going through.. many i am 100% sure have it 10x worse than I did but really if you are desperate, take my advice..

my email is ** if ya's have any questions.. if you want you can post this on another message board... just trying to help

thanks
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Old 05-23-2009, 11:52 AM #3
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Wink Recovering from rib resection

I see that your post here is a few months old, but thought I'd comment anyway about your concerns of recovery from rib resection surgery - just in case you're still battling with the idea. I was REALLY nervous about this too while facing surgery with a small business, side job, five kids, and a household to run. I actually planned for a few months of recovery, flew my mother down from Washington to help out, and basically "signed out" of life for a few months.

My surgery was on May 1st. First week was hell and jam-packed with pain medication. Second week was 100% better but still recovering and having a lot of pain. Third week I started feeling human again and even wanted to drive, type, and work a little. Now I'm trying to hold myself down to not overdo it, but I can't believe how quickly I'm recovering. Hoping the nagging (but relatively minor) pains, etc. won't last forever, but overall I'm very pleased. The venous and arterial blood flow is restored, so my surgery was a success as far as I'm concerned.

I know that every person's situation, diagnosis, prognosis, and recovery process is completely different, but hopefully my input will help you out. Good luck with whatever you decide. Hang in there!


Quote:
Originally Posted by rbn4jsus View Post
Hello,
Reading several posts on this forum has been helpful and concerning. I am a 40 yo generally healthy woman with bilateral cervical ribs. Symptoms in my neck began 20 years ago, chronically 5 years ago after a car accident.

I've done everything in the book to manage the discomfort. Both my kids have c-ribs too. They've each had one rib recestion due to arm pain with excellent results. My main symptom is neck muscles locking up randomly-spasms, upper back, some slight arm discomfort. TOS study showed vascular impingement. I consulted surgeon who did my kids' resections last week-he thinks he can help me. i am unsure. I am not a teenager to heal as quick as they did, and my symptoms are not the same as theirs. Doc thinks he ccan help-after reading here today...yikes.
I'll be checking back for any new updates. glad to know I'm not the only one

*I'll copy this to the main TOS forum also*Jo

Last edited by o2bponca; 05-23-2009 at 11:54 AM. Reason: spelling error
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Old 03-02-2014, 07:44 AM #4
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Default Update-5 years later...

Interesting to read that I wrote my kids resections were a success. Five years later, my daughters resected rib has totally grown back and symptoms have returned. My son and daughter are both limited in their employment choices due to lifting/repetitive movement restrictions. I had resection almost 5 yr ago with returning symptoms within a year, breast reduction for neck/head/back/arm pain, symptoms improved for only months with return of pain. I continue to juggle life and do what I can to minimize pain and flareups. I also continue to seek answers to my pain issues, as do both my grown children.

Quote:
Originally Posted by rbn4jsus View Post
Hello,
Reading several posts on this forum has been helpful and concerning. I am a 40 yo generally healthy woman with bilateral cervical ribs. Symptoms in my neck began 20 years ago, chronically 5 years ago after a car accident.

I've done everything in the book to manage the discomfort. Both my kids have c-ribs too. They've each had one rib recestion due to arm pain with excellent results. My main symptom is neck muscles locking up randomly-spasms, upper back, some slight arm discomfort. TOS study showed vascular impingement. I consulted surgeon who did my kids' resections last week-he thinks he can help me. i am unsure. I am not a teenager to heal as quick as they did, and my symptoms are not the same as theirs. Doc thinks he ccan help-after reading here today...yikes.
I'll be checking back for any new updates. glad to know I'm not the only one

*I'll copy this to the main TOS forum also*Jo
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Old 05-06-2009, 08:11 PM #5
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Hi. I am new to the site,. I have had two surgeries for arterial tos. I am now in severe pain w/ loss of sensation and grip. I have to sleep w/ arm on pillow. Is anyone else having this problem?
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Old 05-12-2009, 10:51 AM #6
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Default Post-op symptoms

Quote:
Originally Posted by nurseinpain View Post
Hi. I am new to the site,. I have had two surgeries for arterial tos. I am now in severe pain w/ loss of sensation and grip. I have to sleep w/ arm on pillow. Is anyone else having this problem?
Did you have surgery on both sides or on one side twice? Did you have any neurogenic problems before (like the loss of sensation and grip) surgery? How long ago was your surgery/surgeries?

I just had my rib resection/scalenectomy 10 days ago and now have numbness on the back of my upper arm (like it's been sitting on ice for an hour) that wasn't there before. Doc says its from stretching the nerve during incision and getting access to ribs at surgery. Should get better within a month or two.

It's a trade-off because the alternative without surgery was no blood flow and risk of clots, etc. Thankfully, that seems to be restored!

Would love to compare notes with you.

Carrie
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Old 05-22-2009, 09:24 PM #7
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Hello all,
My wife has been browsing your forums for quite some time now and i decided its time for intros.

32 yr old male
injured in Sept of 2008 on the job
on W/C
Dx'ed with TOS in left shoulder


We live in AK, so there are very few doctors whom will deal with my diagnosis. I was very lucky to have found my current doctor. I have been doing Phys. Ther. since Sept. 2008. I feel the treatment plan has floundered. There is only one Dr in AK whom will operate. I am at the end of my rope ( ) and it seems from the reading i have been doing that i can expect to wait quite abit longer. Once again i can't say enuff of how much it has helped knowing i am not crazy and that i am not the only one in the world with this problem.
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Old 09-21-2009, 03:27 AM #8
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Post new to site w/ tos

Hi to everyone,
I'm F/47, dx tos late jan 09, had rib removed May 7th.
otobponca, I'm so glad to hear your postive results from your surgery!
Mine have not been so successful. I was in the hospital for 5 days went home, noticed my incicsion was not looking happy, went back to doc only to be put back in hospital for another 4 day to get rid of the infection! I still have much swelling, pain and numbness all the way down my arm and my fingers. I still have "pins and needles" and stingers. Now since the surgery, I've a deep cough (which we all know the painful results of those ) and the feeling of an ice pick(or a hot iron) shoved through my chest and out my shoulder blade! My pm says it's just the nerves settling down and it may take a while 6 mo to a year!The surgeon I had, stopped seeing me at the end of May. I told him of my issues and was told that I must be crazy, cuz non of his other patients had those problems
I have nothing left to say to him. I also now have no insurance, no medical or ssi allowed b/c I have a retirement fund, no sdi, no w/c and waiting for an answer from ssdi. I hear it could take years! they'll have to look for me living under a bridge or something by that time
Thanks for listening, I don't know what else to do. PT is too expensive, thinking about maybe finding a good chiro or pt or doc to date, know of any single
Kathy

ps: is there another thread for TOS or is this the one?
thanks
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Old 09-21-2009, 03:34 AM #9
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Quote:
Originally Posted by kfarneti View Post
...ps: is there another thread for TOS or is this the one? thanks
You found the thread where our new members in the TOS thread introduce themselves.

Most people move down below here to post their questions.
Here's the link and you'll find "New Thread" towards the mid top, on the left... where you can open a new thread to discuss your concerns.
http://neurotalk.psychcentral.com/forum24.html
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Old 09-21-2009, 11:50 AM #10
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kfarneti
I'll copy your post and make it a new thread on the main TOS forum for you.
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