New and desperate for help
 

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.

pregnancy
 

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

Babies
 

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 :hug:

First off.... I'm a guy- never been through childbirth myself- the closest I have been was helping my wife 10 months ago. We decided (at her prompting) to look at all-natural birth methods. We had ~3 months (12-14 classes) where we worked on mind and body pain control techniques. I only mention this because given your situation, they might be handy (regardless of how you have your little one). The "method" we did is called the Bradley Method.... I liked it, because it kept me involved. Anyways.... best wishes with whatever YOU choose.

Yep
 

Dabbo, your such a great hubby and daddy!!!! ;)

ah, well, just lost a nice long reply to cyber space.

*sigh*

RM- I might really take Beth's comments regarding c section to heart. Surgical pain will go away, complcations of TOS may not. And in any case, the after C-section pain meds will help your TOS pain :) Nothing like efficiency of medicine.

My third baby is 22 months old and i got my TOS when i injured myself just after she was born. Of course you are aware your connective tissue is super limber in there right now and that will only get worse as you get closer to delivery. Well, I was just doing yoga- straining MUCH less than i did in childbirth, and here i am a year later, just had surgery number 1 of two....and am out of work on disability and can't sit in a chair for more than half hour or so. :(

I don't hold my kids any more than absolutely neccessary, i always change the little one on the floor, i sit on the floor with them all the time to avoid lifting them to where i am (although that is not always good for your posture)

However, this thread is for what to do for YOU the here and NOW....I do not know if you are allowed to get botox during pregnancy? My doctor has done botox injections for me (and there are some others around here) to relax the scalene, trapezius, and pectoralis major and minor muscles. It offers great relief for about 6 week at a time. It is expensive, but insurance will often cover it. Best of all, it does offer pain relief without systemic drugs. Like I said, though, not sure about doing it during pregnancy. I did it while I was nursing, so i know that's OK..

ALSO, look for a hellerworker, chiropractor, a good PT or osteopath, and/or massage therapist who can do manipulations, myofascial release, and/or ultrasound. These modalities can really help you feel better, even if only for a short while, and will help you get through this period where you don't want to be taking medicine.

You can ask yuor doctor to prescribe a TENS of Interferential stimulator for you as well, those little guys can offer some great pain relief. Try one out with your PT or Chiro before purchase to see if it works for you.

Focused relaxation....you may already be working on this for childbirth, use it for your TOS pain , too....get an ipod and associate your relaxing with a particular song.

My other suggestion is for after- you must get a very very good nursing pillow if you intend to nurse. Holding baby in that nursing position is terrible for your arms when you don't have TOS, with it, you will do yourself some major harm. You will need something with more support than a boppy, I think. I sure did. Also, my symptoms were always worse when the girls were full, so be preapared for that. I still managed to keep it up for 20 months with my last baby, so you can defintely do it...but please be good to yourself!!!

I'll keep thinking, just getting out of baby mode myself, as I quit nursing a few months ago and have just had a left rib resection. RIght rib resection still to come in the next few months. *sigh* then hoping to get down to the business of getting better.

Preagnancy and nursing are such a beautiful part of your life and your baby's. I definitely had a feeling i was waiting to really take care of the TOS while i waited for her to finish nursing, but it was important to me to let her go for as long as she needed. You can definitely get through this...OK?

*hugs*

Johanna

Thanks to all
 

Thank you all for your wonderfull ideas and advice! I was diagnosed with my tos pre-pregnancy and had already been living with it for almost a year before they concluded that thats what i have. I have made several attempts at pt with little to no pain relief as well as being on a myriad of medication before the pregnancy. It has been a long legal battle with the w.c. insurance company, and considering the high level controversy surrounding the support of the diagnosis in the medical community, it's not all that surprising to me. I have had a ten-pound lifting restriction since october of last year (it was 20 up to that point, but my symptoms kept worsening, so the doc lowered it), as well as no right-sided reaching/grasping, no pushing/pulling over 10 lb force, and no overhead activity bi-laterally. I have had several attempts at pt, trying everything from stretching, to ultrasound heat, to strength training with 40lb+ weights (which I came to learn are a big no-no w/ tos and should have been avoided all-together); with the exception of the ultra-sound and the e-stim, pain pretty much increased with each session, so we're giving it a break for now. At present, I am trying to manage the pain with a very low dosage of hydrocodone when it becomes unbearable, and the use of a four-lead T.E.N.S. that my O.B. suggested after I entered my second trimester, which has become a new appendage for me.
I am concerned about the pressure and strain of my growing abdomen and the looming labor on the brachial plexus, as well as the effect it might have on this birthing experience. I have an appt next week with my O.B. and plan to discuss the option of induction or even a c-sec if neccessary.