Hello everyone. I'm new to the site and I'm really looking forward to maybe finding some support if nothing else. I'm a young, otherwise healthy mom living with thoracic outlet after a work injury two years ago. It has been a very long exhausting road and I am incredibly frustrated with the little bit of information my doctors can give me. It took eleven months to get a correct diagnosis and I have heard everything from 'its just a pulled muscle' to 'its all in your head'. I have had several x-rays, CAT scans, MRI's, EMG's, and SSEP's, as well as numerous vascular studies on top of a VERY painful myelogram. I have had one nerve block in the c5/c6 space to no avail, and several trigger-point injections in my right shoulder that did not help either. My symptoms have worsened dramatically over the last two years, and I fear living the rest of my life with this condition. My TOS is strictly right-sided and a cervical rib has been ruled out. Currently I have sever pain that radiates down my scapula and around my rib-cage; there is sub-clavicular pain as well as chest-wall pain similar to the feeling of angina. I have right-sided arm pain that seems to start at my armpit and follows the underside of my arm, through my elbow, into my wrist and fingers, primarily my fourth and fifth digits. I have increased sensitivity to cold and experience tingling, numbness, and swelling with any abduction of the arm greater than 30 degrees. To complicate matters, I am expecting my second child in three months, and with the increasing size of my abdomen putting pressure on the brachial plexus, my symptoms seem to be more difficut to control and none of my doctors have ever treated such an advanced stage of this condition in a pregnant patient, so they have been unable to tell me what I might expect in the next few months.

Hi Ruperts_mom203

I have also copied your post from New Memebers forum to the TOS forum as the members here are very helpful and supportive

Have you ventured to the University setting yet? I'n heading there next week at my gp's request. He thought that would be better than sending me to another specialist and I might actually get some help vs the brush off (my words his were a bit more politically correct) Little experience and wanting to remove my rib by just looking at me is just a bit scary when one knows there are tests that can be done but they just want to book a surgery for the $$$$. Plus since none of them had the b---- to say when this really happened that I didn't need the five previous surgeries for carpel and ulnar tunnel and is related to the 16 years of dental hygiene then they can keep hoping I'll come back after my 6 months of PT for re-eval. Pt made it worse hence the need for additional treatment and now the university and Denver. Good luck and maybe the University might be able to help.

Welcome RM and congrats on the soon to be new arrival!

My TOS is caused by cervie ribs and with both my children, I experienced a lot of vomiting. Particularly within 24 hrs of delivery. post-delivery I had severe weakness, vomiting, chills/hotness, and the classic 'lump' just above my clavicle. at the time I wasn't aware of what was causing my symptoms. My Dr thought it was cancer, a cancer specialist ruled that out but never gave me a definitive answer. Another Dr claimed it was 'cat scratch feever' (I worked in a metal shop with rusty impliments and was cut often). They made me stay home from work for 6 weeks. It eventually resolved itself.

Avoid lifting baby (or anything) too far away from your body. Since you know you have TOS, you can start to modify your movements NOW without the trial and error we all went thru. Read on... others will post soon with great ideas for you.

Anne

Welcome,
I am so sorry that you are suffering from this. So many years ago our road down TOS began. After two to three years finally we found doctors that that are some of the top TOS experts.
That was 14 years ago. Ifound the forum over 10 years ago. That was when we started as Brain Talk 1, but a forum problem last year lost so many valuable archives there I would have loced to share. We are trying to rebuild data bases here though.

I had a few forum friends that had children. my older son has TOS among other injuries and is a stay at home Dad with my Grandson now 2. I did notice the flare up when Connor was smaller and carried a lot, When I helped them I kept everything on the floor. I had a diper center lots of pillow support and boopies to help support, I use even now an unbrolla stroller to wheel him everywhere,

He is now 33 pounds. It does get easier when they can walk and amuse their self. Just the running to keep up with him.

At night when baby is asleep..if they sleep. Take advantage to hot shower, soak, rub on biofreeze, use ice packs or frozen pea bags, At times I have heat on the back and ice on the area it feel like a knife is in my upper back and neck.

There is tons of love, understandoing and support here. I will try and search for some links we had with caring for babies and tos. SOmetimes they were copied and used other places and saved.

Welcome to the TOS family.
Dianne

Hi and so sorry to hear your story. I had (pre-TOS) an unnecessary and unwanted c-section with my first, worked hard and ended up changing to a midwife (at 36 weeks!) with my second, and had a minimal pain-relief, vaginal birth second try. It was important to me because there weren't any medical reasons for me NOT to have a regular birth.

In this situation though, you may want to consider, as some Moms actually develop TOS for the first time during birth, due to strain on the plexus during pushing. If you're already dealing with high pain, you may want to avoid a prolonged pushing phase, or hard, intense pushing that is often the case when induced. Either will further aggravate the brachial plexus.

I'm sorry as this may not be what you want to hear, but since I can now compare the two, I wd take the c-section any day over increasing the TOS pain level, because I know the surgical pain will go away in a couple of weeks.
And you need those arms as healthy and rested as possible to cuddle that sweet little one.

Of course you should discuss this with your family and Dr, just wanted to share my thoughts.

We had a gal here who became a Mom a while back, and I THINK she scheduled a c-section - but can't swear to it. Wylie, you still hanging out in the ether somewhere? Come in, come in, olly olly oxen free! (Now I'm really dating myself!)

Try to keep the arm elevated as much as possible, propping it on pillows when sitting down, sticking your hand in a pocket or thumb in a belt loop when standing. Take frequent breaks, change positions, do gentle stretchesof neck or arm, one side at a time. Don't reach above eye level, move things down to within reach. Replace heavy items with plastic. When you notice pain start to increase, STOP! Call it a day - the rest can wait til tomorrow. Working on through the pain will keep the nerves aggravated and hypersensitive.

Treat yourself gently. Relax and stay calm as possible. You might ask about aquatherapy, it would feel great while pregnant, and was the only PT I could tolerate at one point. It may give you some pain relief. Massage is another option perhaps - discuss all your options with your Dr, ok?

Best wishes,
beth