btw, my first othopedic consult is tomorrow morning. wish me luck
:)

Guess I have to introduce myself...
 

... in order for anyone to read/reply to my posts? Not too familiar with the protocol on forums, sorry if I offended by posting "out of turn".

I'm a professional pianist, injured in a car accident three years ago. Had ulnar nerve transposition and arthroscopic shoulder surgery two years ago. The shoulder pain never went away. Elbow pain has returned worse than before.

My doc now thinks I have TOS, and from what I've read it seems like a good diagnosis.

So, my question - if you have nerve entrapment in more than one place, can you need to get the nerve decompressed in both places at once? Should you?

thanks

been away for a spell
 

So I want to re-introduce myself. Hello! I'm threading the waters of TOS/ RSI and the workers' comp system in California. I really love this forum. Its a wonderful resource. I am trying to expand the resources in the cyberworld (:p), I have started a blog addressing questions I've encountered along the way. If anyone is interested, please check it out!! :D http://rsi-wc-california.blogspot.com/

Thanks guys! :grouphug:

Hanging in there w/ TOS
 

I was diagnosed 12/06. Had 1st rib resection on right in 06/07 and on left 12/07. Don't know where I got this blessed thing-mva 12/03, rounded shoulders, fell out of tree 4/06. Have done lots of PT and exercises at home. Ice is the best besides the pain meds which I have weaned off so as not to get addicted (addiction in family). Seeing Dr. Ahn in LA and hopefully another block next Tuesday will reveal why the pain in my left is getting worse again!

I am very impressed with all of the things some of you have gone through and still have a positive attitude!! Gives me a reason to quit whining!!!:wink:

TOS since 1994
 

Hi everyone- I can't believe I just found this site after all this time. I'm suffering in the middle of a flair..
B/L TOS/Brachial and Cervical Plexopathy since 1994.RSD, Fibromyalgia.
From MVA in 1994, was , hit on passengers side while I was the driver and suffered a torsion (burner injury). I get into trouble with things I know I can't be doing..lifting a 40 lb 4 year old, vacuuming, etc.
Iv'e been suffering with exhausting pain...I have a great PT who has helped me tremendously....My family has no understanding of this disorder.So glad to have found this site!!! Thanks:)

TOS survivor!
 

Good day all.I have right sided TOS and had surgery for it in Dec 2007.All went not to bad.Rt.lung was not fully functional after surgery.Had to do the breathing exercises for couple of weeks. Came back thank goodness.
Work tried to force me back before I was seen by my surgeon for follow up.I waited for my surgeon and lets say.....the return to work has been worse than being freshly post op! Surgeon wanted result of a certain exam before seeing me for follow up but work said did not matter and took my pay from me for 3 weeks! Doc note said to remian off work but they say they do not accept doctors notes!!The fight goes on about that.
As for post op...was very painful for about 3 weeks.Just to lift my arm made me feel sick .Just got some of my range of motion back.Arm still weak to the point I cannot lift much. I am an xray tech/mammographer so all my hours are filled with lots of lifting.My neck feels very tight on rt side.incision under arm healed nicely...still numb though and sore at some points.Hand still goes blue when used. NO one at my work even knows what TOS is let alone what a rib resection involves ,so kind of get feeling they think I am lying.
Hope you all are doing fine.I hear you and feel your pain!

Glad To Have Found You All!
 

When BT went down I was devastated! Finally life has settled down enough to find you all! Was sad to see the above "in memory". I remember her well!

We have moved back from Vermont to Colorado, And am beginning new life.

Love you all, Dawn

Thanks for the wealth of info you have!
 

I have been a member for a few months. But decided I'd better intoduce myself. My name is Terri , I'm from a suburb of Dallas, TX. Dr. Urschel is my doctor and by the way the only doctor in TX. I'm having surgery on March 25th. They are doing a rib resection on the right side. And then in 8 weeks we will be doing the left side.

I look forword to getting to know everyone by joining in on some of the other discussions.

It's nice to have others that understand my pain. :Wave-Hello:

I am a 24 year old band teacher diagnosed with TOS back in February. My symptoms began as right wrist pain about 4 years ago and since then have spread to many more. I have been to several docs and am in my 2nd round of PT right now. I am scheduled for surgery in less than 2 weeks now with Dr. Sanders. He's currently planning on doing a bilateral pec minor release. Recently after stretching my pec muscles I get this burning sensation around my collarbone....like a sunburn feeling. Is that common with TOS/pec minor syndrome or do I need to begin investigating RSD?

new to this--got any ideas?
 

Hello out there,
I was born with a cervicle rib and for years I have had problems--tendonitis, carpal tunnel, de quervain, oa. Now doctor's are looking at fybro. Not working at the moment 2 years. Need to know where to go from here. I'm kind of thinking I should be looking at SSI. Does this make sense? I've been to chiorpractors, orthopedic(sp), rhumatoid dr's, and general practioner, nathural path also, for each new thing that pops up or really bothers. Any ideas?

Please feel free to also post in our main TOS forum here -
http://neurotalk.psychcentral.com/forum24.html

Especially if you have questions, sometimes we miss noticing the intros here.
sorry about that. :grouphug:

Suffered w/TOS for 15 yrs.
 

After being diagnosed 15 yrs ago w/TOS my pain mgt. Dr. gave up because my employer (AT&T) would deny her treatment recommendations. After yrs of going from Dr. to Dr., meds, PT, etc. I found a neurosurgeon in Santa Monica who has developed MRI Neurography which he used to finally be able to tell where and how my nerves were being compressed. He did surgery in my thoracic area, minimally invasive. He also did surgery in my buttock area because my sciatic nerve was being compressed by the periformis muscle. He was a God send. I am 5 wks post op. I feel that I am on my way to full recovery. I feel I have gotten my life back. :)

This has been a strange road...
 

Hi I'm Galen,
I'm new here so I thought I should introduce myself. I'm 24 and male which seems a bit out of the ordinary for TOS. As a result, I can't get any sort of real diagnosis for my problem. Oddly enough, I was in really good shape when this all began about a year ago. I've gone from my primary care physician to neurologist to an orthopedist to PT to recently being told to go to a rheumatologist.

My problems started with poor posture at work/slouching. I started developing numbness in my pinky and ring fingers due to ulnar nerve compression from resting my elbows on the desk. As soon as I FIXED my desk ergonomics all hell broke loose. Long story short, my scalene muscles are now like iron and when I wake up in the morning if feels like I just did a back workout at the gym the day before. My biggest symptom is that my fingertips now have decreased blood flow. They get really wrinkly in water and cold. I have to be careful with what physical activity I do.

Hopefully I'm able to get some relief along with everyone else on here. Cheers! :Wave-Hello:

H! from new member
 

Hi! I was on the other forums a few years ago as I developed TOS on the right side due to a car accident. I eventually had surgery and my 1st rib turned out to be abnormal. All nervous and vascular symptoms disappeared (or greatly diminished) since surgery; however, I'm back on the forums as I've likely sustained an injury to my left brachial plexus in a fall 3 months ago. Besides neurologic symptoms, I am now experiencing vascular compromise problems. Due to the swelling, the doctors are finally ordering imaging of the shoulder and brachial plexus.

A bit about myself: I live in Washington and have a 2-year-old son. He's a good kid!

hi
 

Hi
After visiting the forum for a while, thought I should actually finally join.

I'm based in the UK and started getting symptoms at Easter. Fairly rapidly progressed and by June my left hand was clawed, no grip, severe pain and no pulse - and couldn't turn my head to the right without getting dizzy. After 2 months of not getting anywhere with the joys of NHS - public health care in UK - no picking who you go and see - I finally had an angiogram which showed that when I raised my arm or turned my head, I occluded my subclavian artery.

Had my first rib resection just over three months ago and the first few weeks were tough - finding the forum and reading other people's experiences really helped me realise I wasn't the only person who found it hard...and now I'm improving all the time. Long way to go but I'm back working 3/4 time, swimming and starting to get back to normal.

This is a great resource - and such a supportive community. Thank you.

You are all a God send!
 

I am so glad I found this forum. I don't know anybody (except for my vascular surgeon) who has ever even heard of TOS. Like many of you, it has taken several months to get to this diagnosis.

Had a whiplash injury from the right rear that snapped my head to the front left. Hadn't associated it with the pain, weakness, and numbness I started to have in my left arm, shoulder, and neck until surgeon discussed the possible causes of TOS with me. Ding! - Lightbulb!

Also, I'm a transcriptionist and make a living at my computer - so I'm sure that doesn't help.

My S/S are: left arm heaviness, aching, and numbness/tingling (especially of last 3 fingers); frequent headaches; NO pulse or blood pressure with arm abducted or head turned; constant pain at front and back supraclavicular area and left side of neck; even more pain when I try to lift anything or use my arm in an unnatural or "tweaked" position (even pushing myself up out of a chair is painful now); white to bluish discoloration and swelling of arm/hand; veins showing up all up and down left arm, but not right.

Have also had some other symptoms recently that may or may not be related: left ankle pain and swelling; transient hypertension and tachycardia ; bilateral supraclavicular swelling; similar TOS symptoms starting on the right side.

X-ray, MRI, and CT show nothing except loss of lordotic curvature (of neck), but docs can't deny the loss of pulse with arm abduction and so were willing to continue testing. Angiogram on Nov. 19th showed complete subclavian arterial and venous occlusion with nerve impingement between clavicle and first rib with arm abduction. Doc recommended first rib resection, but is referring me to a doc with more experience.

I'm scared and nervous to have this surgery because I'm a very busy wife, mother (x5), and small business owner (x2). Everything I've read so far says the post-op for this surgery is horrendous and long and that the surgery itself is not always successful. I'd love to find an alternative but doc says vascular complications make surgery necessary and opting out could be life-threatening.

Thank you so much for all of the support you have shown in the short time I've been on this forum. I'll continue to search threads looking for info. Would love to hear from anybody with similar S/S, diagnosis, prognosis, etc. Also, if anybody knows of an in-person support group in Southern California (Riverside or San Diego counties specifically), I'd love to get information on that.

Thanks again!

Carrie

New here considering rib resection TOS
 

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

the chicken one
 

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.

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

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?:confused:

Post-op symptoms
 

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

Newbie
 

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 ( :icon_frown: ) 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.

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!

Hi All
 

I've had symptoms since I was 18. Misdiagnosed for the first 3-4 years, I had 2 needless surgeries before my 1st rib resection in '02. Still struggling daily though. . .

new here
 

I am new here, but not new to tos. please excuse typing, i am in a wrist spllint.
I started with severe neck arm pain, was told I need neurosurgery. :eek: cervical stenosis, c-spine spomdylosis, ddd, diagnosed with tos by 5th neurosurgeon, 2 level fusion of c5-6 and c6- in july 07, it helped a lot becuz then i could not move at all for 7 months. it has slowly returned in this past year to the point that i am in trouble cuz there's no way i can work and i need to get divorce.....i also have bad low back probems constnt pain there, hips and legs, upper back.

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:eek:
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:mad:
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:winky:
Kathy

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

kfarneti
I'll copy your post and make it a new thread on the main TOS forum for you.

New to the forum...question for all
 

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks

Well, I'm back.

Was dx'd with TOS in 2006. Had a rib resection.
Never fully got rid of TOS symptoms in my opinion.
Just kind of dealt with it and got on with life. Now my symptoms seem to have returned with a vengeance.

Logged back in to look for some posts regarding people who've had relapses. It's depressing to see so many people suffering with what I do.

I've spent the last couple years ignoring my pain and discomfort and not letting on to people I was in pain.

Now it appears I've got to do something again.

Don't know who to approach. The surgeon who did the resection retired and moved. And I don't think my primary doc wants to deal with this again.

I think I'm home
 

think this is it. been >3yrs now since cycle flipped sideways. shoulder pushed up and spine over shoulder (helmet bouncing off road). funny bone hit for months. nervey up right cervical, down right thoracic, and out towards right shoulder. wasted. winging scapula. clunky neck. just such rubbish pain.

why is computing causing such problems?
why does using the arms?

i can't live like this. shoulder surgeon sending me for possible modified eden-lange or serratus anterior surgery. but i was just examined by a medic about 2 yrs ago and i had a MASSIVE reaction - whole nerves flared up (he was trying to figure out why the right side was more forward and down than the right). what to do? any recommendations? i am so scared. i was lying on the floor in agony for months and only recovered to how was before (rubbish if you try and do anything) over a year later.

what is wrong with me?! had axonopathic proximal plexus and spinal accessory nerve lesions finally in sept 09. had all of right cervical and thoracic spine denervated before then, because pain guy thought it was spinal. right, best go, arms hurting like ... anyone else have very tight thoracic spine and crushing pain around the chest (along with the rats eating your shoulders, heavy electric arms and cold hands, stabbing neck, aaargh!)

why me? my daughter is 7 (she was 3 when this happened) and all i ever wanted was to be a good mum and a hard worker. sorry, feeling down. pain consultant saying my doing computing for 22.5 hours a week is not 'an insurmountable' for me. wish he knew what this felt like when i type. can i show him anything? he probably just thinks i'm workshy (had 1, 2.5, 1, 2 days off sick in 4 years prior to accident, bar 4 days for missed miscarriage, have 1st from cambridge and a ph.d. and post-doc research), but my pain just becomes unbearable doing this or anything else like sewing, or hoovering, or keeping my neck and upper back rigid. i was/am a maths modeller / software engineer.

does this make sense to anyone? i feel so alone.

after doing an hour computing through the day yesterday i ended up where i spent most of 2007 (when i was forcing myself back into work). on the floor, on my front, with my hands and arms under my shoulders and thorax, with hot wheat pillows on my back and neck, a fentanyl lozenge in my mouth, and sobs of pain and frustration. i couldn't even collect my daughter from school 10 minutes away. her father had to, and he'd been up for work at 5am.

i feel so useless. unhappy smiley face.

New to thw Site, Not to TOS
 

:Trapeze 2::Trapeze 2:
Hi! My name is Tracie, I live in Santa Monica CA. I amfinally having surgery on my left side tomorrow.I can no longer deal with the chest pain....just found this forum by accident will checkin after surgery. I wasnot able to post a picture :(

Back to the TOS Problems
 

Had surgery for TOS Rib removal and muscles removed 16 years ago. This was from a card accident. Did ok after a while and 2 days ago some idiot rear ended us while we were stopped at the light. Here comes the paid shooting down the arm. Pain under the arm and hand killing me. Thought I finally was out of this. Don't know where to go or what to do at this point. We to urgent care they havn't a clue.....

Intro
 

Hi all,
I was hurt at work in 2007, diagnosed with TOS in 2008 have cervical ribs on both sides. I hit the jackpot and have venous and neurological TOS. Had TOS surgery, removal of 2nd rib surgeon couldn't reach 1st rib in Sept. 09. Relieved some symptoms, still have numbness, tingling, right sided weakness, someday's have blurry vision and migraines that continue off and on. Have major flareups that cause a lot of pain in shoulder, neck, and arm. Also have back pain and right leg pain. Had an ovarian venous thrombosis in February that doctors claim is unrelated to TOS. Workman's compensation in California is not good, everything gets denied therefore limited treatment in form of physical therapy, or chiropractor. Have had steriod injections for pain relief, no botox yet. Surgery did help as i no longer get dizzy, or have symptoms of a stroke. Hospitalized twice in past with stroke symptoms because my arms were lifted over my head. Unable to work full time since May, was on partial work schedule off and on for over year and a half.

TO surgery 3 weeks ago
 

I was involved in a car accident Nov 09. My life has not been the same since. An 18 year old ran a stop sign and T-boned me and totaled both cars. Eventually after symptoms started to appear had Cervical Fusion Surgery C5-6-7 at end of March. About 7 weeks later I was diagnosed as having thoracic outlet, both sides, right side worse. After much thought I decided to have my right side done 3 weeks ago. My brother had to have both of his sides done over the last 20 years which helped in my decision to do it. My surgeon, who was his on his last side done, is one of the top in the area. I did not expect the pain, I was in afterwards, and the slow recovery. I am concerned that the TOS pain has really not gone away. My doctor seems to also be a little bit concerned but my brother did not get relief right away, so I am hoping with time the TOS pain will go away. The surgical pain and numbness is in armpit and back of arm (tricept), I am told, is normal and eventually will get better. That I can accept, but am still concerned that the TOS pain is still there, arm and hand:confused:. I was a mess according to the surgeon and he had done many first rib resection surgeries. Hopefully time will heal this to my satisfaction. Have not had PT yet. Hope that helps to although people I have heard have had mixed results.

Feel free to make a copy of your post and place it in a new thread for yourself down in the main TOS forum section - sometimes if there's only a single post up here the members miss it.



Follow this link to make a new thread for yourself on the main TOS section - http://neurotalk.psychcentral.com/ne...newthread&f=24

New Philadelphia TOS patient bilateral
 

I have been diagnosed with bilateral TOS and it is destroying my life and fast. The pain is absolutely horrible on both sides....plus at 31 I jave cervical disk degeneration. I really think the chiro messed me up more. He was using an activator gun on the my back and neck before I even had mri's done to tell me that I have a herniated disk at c5-c6 and degenerative disk disease on multiple levels. You would thing that I was rear ended by a mac truck. What brought this all on was me walking up almost 100 steps with my 13 pd. daughter in one of those frontpack carriers...it straps on your back and you carry them in the front...don't know what I was thinking...thought I would get exercise I guess...but instead of taking the elevator I decided to walk up 8 long flights of steps with her strapped to my chest...horrible, horrible mistake because when I got to the top I seriously almost passed out, was sweating and in pain. As the weeks and months passed and several chiro and PT visits later I got much worse. I am not sure what to do now

New here
 

I haven't been officially diagnosed with TOS yet, but my GP is leaning that way. I've had a cervical X-ray and MRI that has come back normal, EMG test on my arms that showed no peripherial nerve damage and now I'm being sent for a MRI on my entire chest and shoulders. I have pain in my neck and shoulders. Left side is worse than the right. Hand whitening and reduce radial pulse on my left arm, when stuck straight out to the side. My biggest complaint is the pain in my chest, especially behind the pectoral muscle where it goes up toward the shoulder. Does anybody else have terrible chest pain with their TOS? Thanks for the help.

Hi there,

I've just joined this site, although I spent quite a while reading other people's posts on here when my TOS was diagnosed.

I'm a medical student, so it was really discovered by chance when I realised that the pulsation in my neck wasn't normal! It had been there for years, but when I saw a vascular surgeon (he decided to do a doppler ultrasound and a CT angio) he diagnosed it as arterial TOS.

I have a pair of extra ribs, but the right one was causing my subclavian artery to be constricted and as a result had developed a pseudo-aneurysm (what I had seen pulsing in my neck). I'd also had some splinter haemorrhages in my nails due to micro-emboli in my fingers of my right hand and was strongly advised to have surgery as the surgeon thought that there was a high risk of eventually getting thrombus in the subclavian artery, potentially cutting off the circulation to my arm. He also put my on aspirin to try and prevent this before the op.

A lot of the symptoms I'd been getting suddenly made sense - aside from the pulsation in my neck, and the splinter haemorrhages, I also had a colder right hand, and got tingling in the little finger of my hand intermittently (it turned out my T1 nerve was also hooked over the rib).

I went ahead and had the surgery 3.5 weeks ago. The surgeon removed the scalene muscle and the cervical rib (I got to see it, and it was so much smaller than I'd imagined!) but had to make an incision above my clavicle to get access to the artery. It went well and I've been back at uni for the past couple of weeks... no info yet on whether the artery has repaired itself, but I have an appointment in a couple of weeks to find out...

new here
 

Well i have TOS in both shoulders. My TOS was caused by large pendulous breasts. I had a reduction mammaplasty in July of this year to try and relieve some of the symptoms. It helped alot. But symptoms are still there, just not as bad. It seems some symptoms are better but some are worse. I have had TOS for a few years. I always new something was wrong, just didn't know what. My collar bones (both) are deformed. They are pulled down From the weight of my bra straps. I have dents and scars on my shoulders from my bra straps. My neck is curved weird. So the orthapedic surgeon told me. He says from the back view, it curves to the right? He was the one who told me i had TOS. My left shoulder seems to hurt alot, along with my arm and the last 3 fingers and part of my hand. The pain is worse in my left side. I also get the burning sensation in my left side. My right side hasn't done the burning thing since the surgery. My left arm is extremely weak. Now my right side has the pain in the last 3 digits of the fingers, part of the hand and a spot right in the middle of my forearm. Those same places also feel like someone dips them in ice water. My right arm is always cold and icy feeling. When i go and pick something 15lbs or heavier up from head height my arms stop working. IT is the only way i know how to describe it. One minute i am holding the object, the next it is on the floor and i cant move my arms. They eventually start working again it takes a minute or to. I avoid picking up anything that triggers that nowa days. I guess i will quit jabbering. But that is part of my story.