chroma's thread where he talks to himself
 

I love when the supplements shipment arrives and I forget what they're supposed to do and why I ordered them. :)

I've been educating myself about TOS for about 6 months now. There's not much TOS research going on as far as I can tell. How many years from now until a breakthrough in TOS treatment? 30?

Eh, every day I deal with TOS symptoms whether it's pain in the chest,
shoulder, collar bone or shoulder blade. Ug.

On the other hand, I'm overall not as bad as I was during my January
flareup.

The standing desk has been interesting. The good is that switching
back and forth is great for the body. The bad is that when I stand,
the lack of support for the TOS arm meant that I started losing
circulation in it. I was hoping my body would adapt, but instead it
got a little worse each day and even started affecting me when I
wasn't standing. Yesterday it was bad enough that the hand turned red
and the veins swelled up and I felt woozy in the head. I could hold
both hands next to each other and see the marked difference in color
and veins. Oh no!

So I was like "Okay, think this through. That's classic TOS
compression and there are three areas: pec minor, costoclavicular and
scalene." So I checked out the pec minor, but it didn't feel tight. My
neck is always a little tight, but when the scalenes are bad, I can
feel my pulse bang out of my neck. So that left the first rib +
collarbone. So I did a self first rib adjustment that I invented
myself earlier and have never seen anywhere. The vein swelling went
down in seconds and the color returned to normal in a couple minutes
as well as my mental clarity. It was great actually seeing some quick
results like that.

But this morning I woke up with sternal pain. And when I laid down
this afternoon I could feel my pulse in my body, so I know there is
compression somewhere. Maybe I need to adjust the rib at really
regular intervals.

I keep looking for the magic formula that will give me a normal life
and I'm still looking.

I've never been the same since my massive flareup in July 2011. I
never had all these chest and shoulder blade pains. I still have the
flat left external jugular. And no matter how many times my PT and
chiro fix me up, I revert in 3 - 5 days.

PT has improved a lot of things in my body, but is not fixing the TOS
and I think I have plateaued with it unfortunately.

Still, I forge on. Jo*mar on these forums really likes laying on the
foam roller for 20 - 30 mins and her and I have have similar symptoms,
so I'm building that up +1 min per day. I'm building up the walking. I
have some new calming herbal teas to try out. I may take a d-dimer
test to see if I could have a clot in a minor vessel that's ****ing my
**** up.

All you can do is play the hand you're dealt the best you can.

Chroma, I feel so bad for you! What does your doctor recommend? I have dealt with this for so many years I get frustrated seeing others suffer as well. Do you have access to a specialist? Sending healing thoughts.

Thanks Limoges.

The vascular MD's initial suggestion was to start with PT and come back if necessary. So I guess I should be going back. But what's the doc going to do? Seems like the brutal first rib resection is the next tool in his toolbox and I'm not enthused about it.

I want to try some more baby steps first.

Baby steps are good.... they prevent you from falling!:winky:
Oh if only I knew then what I know now!!!!!!!

Best wishes & luck with your self-help.:hug:

Good luck, I feel your pain. The past two days have been hard for me, a lot of spasms. I think it is weather related. I have been watching that everytime a cold front moves in, I have bad days. My scm are so tight right now, it feels like I am getting stabbed in the side of the neck. I am trying to take it slow, and I have been looking into trigger point injections. Don't know if they will help, but a little relief is better than none.

Chroma –

TOS is hard to deal with. I remember what it was like with the other side. I eventually opted for surgery as conservative treatment wasn’t helping and only seemed to make me worse. I had signs of muscle wasting and had lost the use of the hand/arm. That side is doing great but TOS re-surfaced on the other side due to a shoulder injury.

Have you tried botox yet? I get a couple of months relief from it and since the scalenes are relaxed, this might be the time to return to PT to see if it will help (while the scalenes are calmed down).

Hi Sheri,

I was thinking about the shots, but then a few people on here proceeded to get them and had bad outcomes which scared me off. I know they work for some people.

From personal experience, I'd recommend trying the shot at least once. I remember my 1st botox shot. It was so nice to have that relief but when it wore off, I was ready to consider surgery as the difference was night and day. You have to realize that each person reacts to the medication and procedures differently so some people may have a bad experience but others may not.

I agree with your thoughts, it's just hard to pull the trigger on something that might make you much better or much worse. What a weird choice to have to make! :)

I'm moving next month and won't rock the boat until after then.

I understand - But if it does work for you and gets you a few months of relief, it was worth the gamble; otherwise, you will never know. I seem to remember that I put off trying botox the first time until I hit a really bad flare and hadn't been able to get any sleep in a several days.

It might be good to try the shot shortly after moving. I'd think moving will flare up the symptoms.

Yeah I'm truly afraid of the move. I need to move, but moving with TOS is scary. I'll be hiring people of course, but there will still be a lot of running around and doing little things.

Which muscles do you get botoxed? How long have you been doing it?

Talking to myself again:

So yesterday after a first rib adjustment, the circulation issues went away, but then I had hard pains in the arm similar to the ntos I first experienced early on in 2011. I presume I smooshed something in the brachial plexus. Woops. Actually I prefer that over the circulation problems because they mess with my heart and brain and general feeling of well being.

Then later in the evening while watching a movie, I was having chest pains on the TOS side. This probably went on for about 45 mins or so. Did the rib adjustment. Chest pains gone.

So I need to get these scalenes elongated and relaxed. I would be at least 80% better.

Been trying the scalene stretches and everytime I think they are getting better, they tighten up again. same with the scm

I believe they do the anterior and middle scalenes. I've had shot on the right side 8 years ago before I opted for surgery. On the left side (current problem area), I've had 4 shots over the past couple of years.

It makes sense that you need to get the scalenes to relax.

Yeah, I know what that's like. My scm used to get crazy tight like I've never experienced in a muscle before. It's much better now. My chiro did myofascial release on it and my PT has worked on my neck as well. And there's the diazepam.

I also spend at least 10 breaths lying on my back and relaxing my neck before I get out of bed in them morning to make sure I'm not carrying undue tension.

It took weeks, maybe even a couple months, before the scm got better. Since I'm always trying multiple things, it can be hard to pinpoint the exact solution after an improvement.

Anyway, regarding the scalenes, I've decided to go with this self neck massage first to bring blood in the area:
http://www.youtube.com/watch?v=duSNnBnqFts

And then I'm going to try these stretches:
http://www.youtube.com/watch?v=59Pgz9plSd0

Followed by the first rib adjustment.

One web page suggested that if you have a tight neck that you start with the neck stretches 3 X per day. So that's my plan for the next couple of weeks. We'll see what happens.

Thanks. I will definitely keep this on my radar, particularly if my new stretching program doesn't yield results.

I was doing the scalene stretches prior to my shoulder surgery. Two more weeks in a sling and then I can start rehab and get back to stretching.

For the record, I don't believe in doing the neck stretches without doing some kind of first rib adjustment afterwards. The stretches could pull the rib up and compress things further.

So I'm only 4 or 5 days into my new combo:

1. Neck massage
2. Neck stretches
3. First rib adjustment

And I'm feeling sooo much better. I've been doing 2 X per day (instead of my planned 3 X). I get better circulation through my TOS arm after doing this routine. Doing it proactively is the way to go for me. I'll also do it reactively if the arm starts getting funny between sessions.

It feels psychologically empowering to (a) have something I can do that improves my condition, and (b) to see cause-and-effect in action. I remember when TOS first kicked my butt in July 2011 and I could make no sense of what I was experiencing. Nor could my doctors.

We'll see where I'm at after a month of doing this.

:)

Still improving with this routine. TOS isn't gone, but the symptoms are milder.

I was on 2mg diazepam 2 X per day. I tried dropping to 1 X per day, but each day my muscles in my neck, jaw and shoulders got a bit tighter. My old symptom of getting light headed started to come back. Jaw started clicking.

So after that 5 day experiment, I'm back on 2 X per day.

Oh well.

I was hanging out with my Aunt on Saturday and lost the circulation in the left arm. I showed her how the left hand was red with bulging veins and looked totally different than the right when placed side by side. I then shoved my rib down and a few minutes later showed her how they were the same color. She was floored; she had never seen anything like that before.

Where can I find your self first rib adjustment?

There is one at the bottom of this page:
http://www.nismat.org/ptcor/thoracic_outlet

There is one I made up. Disclaimer: I'm only sharing what I do here. I'm not recommending this. I'm also not a doctor, PT, chiro or health care provider.

I tilt my head toward the rib I want to adjust in order to create slack in the muscles. Then I reach across with the opposite arm to put the edge of my thumb on top of the rib. It's a hard lump under some muscles. You get a feel for it after awhile. Then I use the other arm that is on the same side of that rib to reach up and grab the head. Now that everything is in place, I pull my head down while pressing down with the thumb pad. This brings my head all the way down to the side.

I then let go of the head and slowly bring the head up while still pressing down with the thumb. At some point the skin gets pulled too tight and I have to let go and press to let it move out.

On the down side, this technique is a little rough and can make the neck a little tender where I'm pushing with the thumb. But it's also handy because I do it anywhere and without any tools.

Another down side is that depending on how tight your neck is on the other side, you may overstretch or even hurt yourself.

At home I'm been using the towel/strap technique more because it seems gentler.

I overactive my upper traps too much. Just lifting a mug to my mouth, I will automatically hunch up.

This no doubt contributes to the hypertrophied traps.

Why am I posting this? Because this is my thread where I talk to myself! :)

The Intelliskin garment helped me greatly in this regard. Are you considering it?

I was. I had trouble pulling the trigger on an order because I kept thinking that "tight fitting" and "TOS" don't mix. But your comment here has renewed by interest.

I ordered one, think it is worth a try

i bought a shirt like that. and tbh it was too loose for me. mightve helped SLIGHTLY when im sitting and watching tv

flip side, i bought a brace with straps and everything (keep in mindi dont even have really strong muscles) and it triggered some of the worst attacks ever. i felt like i was going to faint

kinesiotaping your shoulders is the safest bet

Do you remember the brand? If it was too loose it was likely sized incorrectly as the material is stretchy and should fit snugly.

The brace with straps sounds like the Alignmed S3 brace...which I dislike.

Kinesiotaping helped me a little, but starts pealing off after a few days. CW-X makes some performance apparel that they claim is based on kinesiotaping. Opedix is another brand with similar garments. I have not tried either since the Intelliskin has worked for me.

yeah it was a cwx shirt

it fits at first then stretches too much

I'm ba-ack. My TOS held up better than I expected during my move. Although I had to hit the cold packs and ibuprofen more than usual. I also had a really bad case of elevated ribs with some sternal pain.

Still, I didn't throw blood clots or feel like I was going to pass out. :)

I used to feel like that after 15 mins of housework, but now I can go hours and still not feel as bad.

It's good to know that all that $PT and $chiro and research and self therapy apparently helped!

Now I have 1,000 neurotalk posts to plow through.

Have you had a chance yet? How did it work out for you? IIRC we have similar symptoms so I'm curious about your experience.

I did get it recently. I have not tried it yet because I was still in a sling from shoulder surgery. I am going to attempt it next week and I will let you know how it goes.

Okay, let's get back to me talking to myself, since that's the title of the thread after all! :)

I put on the topical magnesium oil today which I hadn't used in a couple months. Oooooooh baby! Feel the burn+itch+tingle! :eek:

I had this before when I first started using it, but then it got better over time. Whether that's just simple conditioning or an indication of how much mag is crossing the cellular borders, I don't know, but would like to.

This is the book that inspired me to do the topical/transdermal mag:
"Transdermal Magnesium Therapy" by Sircus (amazon)

And this is the product I happen to use:
"Ancient Minerals Ultra Pure Magnesium Oil 8 oz." (amazon)

Holy Cow, I got a rash all over my chest and shoulders where I applied the transdermal mag. :eek:

Just wanted to document that I had a minor flareup recently. I had gotten lazy about my sitting posture and I returned to an old habit: Sitting in a chair with my hips forward and my trunk leaned back such that my upper back is pressed into the back of the chair.

Before my TOS got really bad, I used to sit like that for many hours in a row for many years. Having experienced a flare up from it, I believe it contributed to my TOS by adding compression.

"If only I knew then, what I know now." :rolleyes:

Intelliskin Foundation Shirt 2.0 arrived Friday. Will try on Saturday. :)