[chroma]

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

[chroma]

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?

[chroma]

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.

[Limoges]

Originally Posted by chroma

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.

[chroma]

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.

[SD38]

Originally Posted by chroma

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!
Oh if only I knew then what I know now!!!!!!!

Best wishes & luck with your self-help.

[brmr19]

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.

[Sheri_TOS]

Originally Posted by chroma

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.

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).

[chroma]

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.

[Sheri_TOS]

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.