[JustSmile]

OK, I have not been officially diagnosed. But I have had these symptoms for 6 years. I have been on anti-inflammation drugs and muscle relaxers this whole time. I have tried Chiropractors, acupuncture, and Physical Therapy, which have all made my symptoms worse. I have been told all types of thing from anxiety to heartburn. I have seen many doctors. All my test come out normal. I recently had chest pain (which is a common symptom of TOS) and had a heart work up with no problems there.

Here are my most common syptoms off the top of my head:
I have chronic headache in the back of the head.
choking or strangling feeling in neck
pins and needles feeling in upper chest and neck
numbness in hands when driving, blow drying hair, etc.
Shortness of breath feeling
Pain in neck, shoulders, and upper back and now chest
eye pain/pressure

I was getting buy taking one muscle relaxer a day. Now I have to take 2 to 3 a day to function properly along with Ibuprofen. If stop one of them I am bed ridden the next day.

I need to find a doctor that will listen to me. My pain is interfering with my life and I am sick of it. I have 5 children and some days I can't get out of bed when my symptoms are bad.

So I am reading post here and doing research. I am a nurse, so I find it helpful. Finding out about TOS is actually giving me hope that maybe I can improve my quality of life, if I could just get a doctor to listen to me.

[chroma]

Originally Posted by JustSmile

So I am reading post here and doing research. I am a nurse, so I find it helpful. Finding out about TOS is actually giving me hope that maybe I can improve my quality of life, if I could just get a doctor to listen to me.

You'll need to see a doc who knows TOS really well in the first place. If you already have, try a 2nd.

Chiro and PT helped me, but as with all professions, the skill level and approach of the professionals varies. You may need to keep trying until you find someone who works for you.

Good luck.

[SHogan2]

Hi, I'm Sarah and I hav thoracic outlet syndrome.
About 6 months after a carpal tunnel surgery on my right wrist, I began to experience pain in the wrist but the doctors immediately scared me with a diagnosis of possible rsd. The pain and tingling spread into my hand and up to my shoulders. Within a year of the pain returning to my right wrist, both arms and hands were affected. Then, after the 4 gangliana nerve blocks failed, my doc says "I'm sorry, I just don't know what to do." Needless to say, I was very angry with doctors, I began to think I was crazy, and I wanted to give up.
I got a diagnosis in Nov. of '10 of bilateral TOS- Two and a half years after the symptoms began. In May, I got a left 1st rib resection, a pectoral minor reduction and a scalenectomy.
No real relief. The pt is increasing my strength but the pain just continues on.
Good luck to newcomers- just keep on.. its really difficult but worth it

[DT88]

Hi, I'm Drake, 23years old. Sorry for my bad english. Here is my TOS history, I went to chiropractor past six/seven months ago, it was helped a bit, but the pain is still coming back, it's seriously disturbing me, and I didn't my what is my problem and I did the physiotherapy also recommended by some doctors, that also the same things. Actually the pain was being started past one year and now finally one of the doctor (Among Ortho Specialists), hand surgeon, diagnosed me that I'm suffering TOS.

Mine is so bad, my shoulder (right) is dropping, and getting winged scapula. Even can't talk over the phone by holding with my right hand. I raise my hand to over my head position, my shoulder is cracking, my right hand can't even touch to my lower back, and my trapezius muscle (right) getting weak, my jaw become dislocated more often, stiff-neck due to my scalene muscle tightness. Of course, numbness, tingling feeling at my index finger, fourth finger and shoulder. Now I'm waiting for the surgery. Hopefully it can cure my TOS fully.

[piratemet]

Hi Everyone! I've been reading through the posts for a few months and felt it was time to introduce myself. I've had worsening, progressive left arm, neck and back pain for about 4 years with left arm numbness and tingling down the lateral arm into my 4 and 5th fingers.

I was shuffled around to orthopedic docs who immediately wanted to do a diskectomy due to herniation at C5-C6 and C6-C7. At the time I was a 27 year old mother to a 2 year old and infant and was completing my phd so I said no way! I was able to manage the pain with intermittent steroid tapers and ibuprofen. It has gotten worse and worse through the years and I've had physical therapy and epidural injections for what I thought was disc issue.

However, I've relocated up to PA (have been in NC for the past 8 years) and things really took a turn for the worse with the numbness waking me up from sleeping (which I don't do so well anyway), not being able to hold a brush to do my hair (I'm also left handed) and not being able to hold my kiddos. Same old story, my new primary care doc sent me for an MRI and to an ortho. Same MRI results and ortho sent me for pt. This is where everything changed. On the initial eval the pt said immediately, I don't think this is disc related, I think you have TOS and he said I'm a poster child for pec minor syndrome.

He started treating me with nerve glides, ART, etc and there was improvement at times but not a whole lot. Sent me back to the doc who sent me for an EMG which was negative. Back to the doc for a follow up and he reiterated the need for diskectomy. Then he decided to do the Adson's test and it was positive. So I went to the vascular today and she was WONDERFUL! She specializes in TOS and was very realistic with me, took her time and it was refreshing to see someone who understood and didn't make feel crazy when I started crying in her office.

So...next steps, x-ray to look for the cervical ribs, pain management, more pt, no more training for my half marathons and triathlons

I'd like to thank you all for all of your posts, it's so nice to find people who understand and reading them over the past few months has really made a difference!

Also, if anyone knows any physical therapists in the southeast PA, Delaware area that have particular experience with TOS I'd love to hear about it!

[Jomar]

Hello & Welcome,

I hope each of you make a thread/post on the main TOS forum when you return, so we can say 'hi" and get to know you better..
you can copy /paste your post from here if you like & to save typing..

Here is the link to start a New Thread -
http://neurotalk.psychcentral.com/ne...newthread&f=24

[chroma]

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL

Early on, I had similar symptoms regarding the arm numbness and 4th and 5th fingers. I did Egoscue from books religiously early on and the forearm and finger numbness was the first thing that subsided.

These days I'm doing PT and an eclectic mix of stretches and exercises from PT books and my PT. I've made enough progress, I don't think I'll need the surgery, but I'm also lucky that my symptomatic side is not my dominant hand.

Does your left shoulder sit lower than the right when you stand square in front of the mirror with your arms at your sides?

Do let us know how things go. We all benefit by sharing information.

[Titus]

Originally Posted by chroma

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL


Do let us know how things go. We all benefit by sharing information.

How did you know that you had pec minor issues? is there a test?

[piratemet]

Originally Posted by chroma

Nice to meet a fellow pec minor syndrome patient! Although I got excited thinking you were going to reveal what your PT did for it that worked. LOL

Does your left shoulder sit lower than the right when you stand square in front of the mirror with your arms at your sides?

Do let us know how things go. We all benefit by sharing information.

My left shoulder does indeed sit lower than my right and when lying on my back my left shoulder is off the table considerably more than my right. There were definitely stretches that my PT did that targeted the pec minor that really worked to open things up - I've had my husband try to do the same ones because I can't do them by myself, I need a passive stretch for those.

My new TOS doc gave me a script for more PT if I want it and I'm debating it. I think I'd like to find a place with hydrotherapy but I really liked my last PT so I'm torn. Also, my semester is starting up (I'm a professor at a local university) and I'm going to be less able to get to therapy 3x/week. Sigh.

I called for the scalene block today and had the xray so at least things are moving in the right direction....it's only been 4 years

[chroma]

Originally Posted by Titus

How did you know that you had pec minor issues? is there a test?

My TOS was diagnosed independently by first a chiro and then later a vascular MD. My pec minor syndrome is self diagnosed based on three things:

1) The paragraph "In 2005 we became aware of a large number of patients who, in addition to these symptoms, also had pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade and in the arm pit. Until recently it was thought that these symptoms were due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome." at http://www.ecentral.com/members/rsanders/ matches my symptoms

2) My PT has found my pec minor on the symptomatic side is tight. (She also agreed with pec minor syndrome when I showed her the above paragraph.)

3) When I do pec minor stretches, I can feel the one on the symptomatic side is abnormally tight. Almost like it "catches".