I am very limited right now on what I can do or talk, as I am very short of breath.

I've had about 6 emergency room visits, tons of cardiac type tests, and CTs of upper area, ultrasounds of abdomen areas, and basically, here's where I'm heading.

Thank you very much for certain peoples' thoughtful, long and complete emailsto me. And also, thank you for thinking your ideas might tie into my situation also.

In the 80's, those were my young child-bearing years. I used to get terrible periods, where chunks of blood would just fall out of a tampon and large pad - kerplop! I had so much menstruation, that for two days of each month, I had to take care of it, rather than work or go to school. But NO doctor would believe me or listen to me when I described it - they just ignored it like they do.

So then I got pregnant with my second daughter, and I had the BEST ob/gyn doc in the world. When he opened me up for the cesearean - (which was a big deal already since he believed when I told hiim how hard and sick my delivery way - I won't go into details, but I had several runs of antibiotics, my entire body went septic, and my bottom looked like a crazy quilt. (A-holes.)

So now we're having my second baby, and the asst. surgeon goes, "omg, she's got severe, advanced endometriosis. She needs to come back in several months and get this all cleaned out. Didn't she ever complain? I can't imagine her being able to function very well with this much bleeding tissue all over her cavities. I don't see how you can save the uterus at this point." Then they noticed I heard, and I said, "what are you saying?" They said they were talking about another case. I was 26. I HAD been complaining...but never taken seriously. There is something about me that the docs don't believe my pain, etc. - I am finding that out, as my OWN current doc told my attorney, "she looks so happy and seems fine, are you sure she just doesn't feel like going back to work?" And he's the guy I come into the office in pajamas, have cried, try not to cry, describe teh excruciating pain, but try not to be a pain in his *** - and I am so appreciative when he gives me the botox and told him that in five years, that is the ONLY relief I've ever had from the non-stop pain, and that there are times I can barely hang on from taking an overdose of pills.

(I did have the hysterectomy and all of the uterine tissue removed from all over my inner cavity. It was so great to no longer have those pains! My health improved as I was able then to jog, work out, etc., every day, which I continued until TOS.)

So anyways, I have had rechecks and do not have any bleeding or recurrence situation. I don't have a uterus. (But it FEELS so large.) I've had an abdomen ultrasound just to make sure that there aren't ovary cancer issues. Liver cleared. Kidneys "ok" right now. Lungs I cleared out the adelectosis (where the bottoms fuse, by breathing very full breaths as a P/T.)

So this new thing seems to be that the TOS pain causes these upper muscles to pull very, very tight, like a corset, and so I can't get full breaths, and start to get light headed as well as panicky, and ultimately, if it gets really bad (like in heat) I have to go to ER and get a morphine shot and nitroglycerin under the tongue. (Oh also, heart / angina cleared.) The only test result that does show are EKG infarctions of the type that prove the electrical (nerve) currents are malfunctioning and failing to maintain a good, regular heart beat.

It does stop movement, ability to eat (because the area is so tight) and bowel movements come to a stop for over a week.

I've attacked that with my strong regimen of psyllium fiber and just a perfect diet for fiber, organic and fluids. (I feel like the flying Nun.)

The air out here is course, dry and filled with visual particulate - heck, we get smog. I have always been so very, very sensitive, I wonder if the bad air (not clean desert air) forces me to breath harder, which then causes my TOS to have to fight harder for breathing, which then has that rebound effect of inflammation (which comes from ANY type of body movement effort) and the inflammation is locating at the lung muscles.

Now, getting my doctor to listen to ANY of this, I might as well blow my brains out here...

God bless you and thank you for helping me to work this thing out. They are little puzzles, and we seem to be the ONLY people who are willing and able to piece them out.

I will always be happy to piece out a puzzle for you, (I mean spend days / weeks trying to find it out) and anytime you need a friend.

Your kindness has really impressed me. THANK you.

Love, TAm

Tam, I'm having the same breathing difficulties. I was guessing it's due to bad air quality - but there are some days that the air is good and I still can't breathe, get dizzy to the point of almost passing out, feels like someone sitting on my chest. In these episodes, my blood ox is 100%, pulse is a bit high, BP is normal (low). This happens oh, about every other week. I'd be stopping into the ER also, but ATL's indigent healthcare system is in major crisis, so I go to the fire dept. first. They don't mind at all!

I am guessing that something has irritated my LTN or some other nerve that controls breathing. But I didn't stop to think that electrical impulses may be going haywire. This would make sense and it seems my whole nervous system can get very angry at the slightest irritation. It's also scary as the heart beats are initiated by electric sparks.

I will bring this up at my next Neuro visit. And yes, these guys do NOT listen to me when I make complaints. WTF??? It's like if it's not a basic, textbook complaint, they don't believe me!

Thanks Tam, I always learn from your posts.

Anne

Hi Tam,
Timely message.
I've had similar episodes for many years now, stabbing pain through chest, TIGHT chest, trouble breathing except VERY shallow breaths. Of course that leads to lightheadedness and who wouldn't have anxiety/panic about not being able to breath?

It was bad enough last week that I spent 5 hours in the ER last Wednesday night(Thanksgiving Eve) getting PEs(pulmonary embolism) ruled out. Mostly waiting for a chest CT. I also had been on a long plane flight Monday night so that added to my concern for PEs. This was my 2nd trip to the ER for this(first was 2 years ago), although I get the breathing issues to some degree almost daily.

In my case I've pretty much decided it is nerve irritation triggering a muscular response. Now that I can recognize it I do everything in my power not to let anxiety escalate the condition. I would guess the bad air is your trigger, muscular first, the resultant nerve irritation really kicks up the muscular tightening.

For me, the nitro didn't do a thing, the EKG was clear( as well as one 2 weeks ago), oxygen helped get my 158/108 BP back to its normal 117/78, and resting HR from 120 back to 59. Blood tests ruled out any heart enzymes, everything else normal.

Feels like broken/sore ribs for several days...taking it REAL easy. I attribute my lack of BM to the narcotics...I really try to up my already decent fiber intake whenever I take them. ;->

Yes, this sounds like we have another TOS related symptom.

I only mentioned my gyn problems in the 80's, as someone here thought maybe I had problems lower that were causing the upper. And, in the ER, they first thought slow bowels were causing the upper tightness.

Well - those two theories are off-base - I think it's the irritated nerves, inflammation of TOS and the resulting hard muscles (which includes the esophageal muscles - they harden up making it hard to breathe or swallow right also.)

So I think we're on to something here.

I am taking it really, really easy right now and just avoiding unneccessary talking, stress, etc., until I get it under control.

Love you all.

I had the same symptoms and my boss (surgeon) ordered a ct of my ribs to rule out recurrent rib fractures from my accident 4 yrs ago! the pain was that bad.
WHAT it was/is, is the costocartilage of your ribs which are connected to your cervicle/thoracic spinal nerves(c5 to t9) acting up. When you have a flare it causes "angina" pain and shortness of breath. I seriously thought I was having a heart attack or had a punctured lung the pain & shortness of breath was that bad (I'm only 45 & in really good health otherwise) They also discovered I have a intervertebral herniations from t5 all the way down the thoracic column, BESIDES TOS.
I took alot of anti-imflammatory meds and muscle relaxants and used the heating pad. This helped to settle it down. As hard as it was I had to relax and try not to be tense, as this made it worse. I did some very slow breathing exercises and stretches.
I think I was doing alot of lifting and this set it off. I just need to be very careful of what/how much I lift and the way I carry things. Loads don't always need to be heavy but if you carry it incorrectly it can cause a problem.
Hope you're feeling better.

I only get this feeling on the left side though...of having trouble breathing, the tightness and fullness. Some of you know I had LTN injury on the left side and I totally think its related. When doctor Nath removed the muscle and freed the LTN it was like I could breath again..But stress causes me to tense up and the muscles in my neck will still squeeze the LTN...He told me to be mindful of what I do because the LTN is such a delicate nerve and easy to injure. So Tam this could very well be your problem or its the smog..only one way to find out and that is tests unfortunatley. Or just be mindful of the cause and try to practice relaxation techniques to help the muscles relax.

I am interested in what you have to say, but admit I still don't get it...

What do you mean by herniation from the T5 all teh way down - do you mean flattened discs, or bulging discs? Bone on bone? Did you have an MRI of the thoracic spine that showed this, or a CT? I am wondering that because so far they've done 2 CTs of my chest area, but I don't think it goes down far enough to see the thoracic spine - they keep doing it too high up. (And why do they do it so narrowly? Gosh, doctors really bug me.)

I am going to go back to the hospital and ask for any results on the Tspine. I know my Cspine by MRI has some minimal findings which don't seem to correlate to any pain, as per the EMG. (All of these tests have to be balanced against eachother and analyzed...very frustrating with TOS!)

thanks a lot.

I know any kind of exercise can incite a flare but since I started doing Tai Chi (beginner) where you gently move your body and dont push it I have been able to breath better and face the day better. It dosnt seem to aggrevate my TOS...there are some things in the video I cant do yet but mostly it helps..maybe some kind of thoracic strech you could do to loosen those muscles up a bit without making the TOS worse. Also some kinds of medicine can cause muscles to tense. I know this from experience. Check side effects of your meds and see if its not a possiblity...Amy

both my CT and MRI showed intervertebral herniations (it goes into the vertebral body above it) and when you look at my MRI's the body of the vertebrae look like they are cracked in half. The radiologist call them Smorls nodes and the one at t8/9 is REALLY BAD (so bad they thought I had cancer on my Ct scan ) but the thoracic spine is only a very small problem with my breathing, this usually causes pain not S.O.B. The TOS can cause S.O.B. due to damage to the phrenic nerve, depending upon what/where your TOS originates is what nerve/vascular bundle branch is affected. (I schedule surgery and volunteer/teach anatomy to high school aged kids so if I get to technical remind me) All the nerves branch off into the intercostal area of the ribs (the muscle tissue holding your false ribs to your sternum and true ribs) this is what causes us to inhale/exhale and allows the ribs to expand due to it's flexiblity (or in our case the lack of)
What helped me was warm moist compresses, RELAXATION/BREATHING exercises, muscle relaxers and not lifting anything. You have to rest to give these muscles/nerves a break. It took 3 weeks for mine to finally go subside. We didn't realize what it was until after I saw the ortho guy and he said it wasn't from my back.
If I may suggest using the warm compresses on the front of your upper chest area and over the shoulder and under your armpit/breast area. You can even use it on the whole rib cage area. (which is what I had to do) I also wear a really good sports bra. unfortunately I'm "endowed" (i'm only 5'3" and 135lbs) but it takes a toll on my upper chest muscles and I can't have the underwire on my ribs, man does THAT hurt! It helps alittle. I also just ordered a Sully Shoulder stablizer to help keep everything in place and open up my thoracic outlet. I asked my boss (who 1st diagnosed this) and he figured it wouldn't hurt and gave me a script. Now I'm waiting to see if the insurance will cover it. I do have really good insurance and DME coverage so I'm hopeful.
If you have any other questions pls ask or PM me.
I've also went back to my chiro this week looking for a temp fix as I cannot have surgery for at least 6 more months due to a new job and they just recently started TOS work. I was amazed and glad. I actually had feeling in my hand for about 1 day after seeing him. I'm hoping to buy some time at least or maybe avoid surgery all together. We'll see.