[Chef Dawn]

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

[Suziq0805]

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?

[mtski15]

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?

[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.

[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!

[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.

[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