[Jomar]

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.

[jeannie quiroz]

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.

[InterHat]

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!

[Sheri_TOS]

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!

[JennyH]

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.

[o2bponca]

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

[rbn4jsus]

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

[tied]

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.

[Mikeyson3]

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

[nurseinpain]

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?