It's been some time since I have written even though I read at times.

OK, professional TOS ladies & gents!

Why is it no paramedic nor nurse knows the severity of pain we are in?

When WE have to call 911 due to our system shutting down or the pain goes sky high ...what do you guys tell the paramedics, the nurses station, what we have? TOS isn't understood.

I have had to explain everything to them. They have put me n the psych room twice. Thursday I had to ask them to move me due to the heroine addict going crazy with 10 personnel including maybe 8 police surrounding him as he is screaming swear words. How does one try to relax the muscles in that situation. They did move me immediately.

I always have my 3 page medical history on hand for everyone to read.
The ER docs understand but it takes hours for the IV to come...

2 pushes of morphine, phenegran & ativan I'm good to go.

It's baffling and I go over and over what, how our condition should be explained more simply and to the point.

Latest update on olecyn:
CRPS is getting worse.
Have had stellate ganglion block, brachial plexus block.
Opana ER twice daily, Opana regular as needed when I function, like now.
Valium and anything else to ward off the flares of CRPS and the ER
Wednesday a scalene block.
Dr. Gelabert requests a SSEP. O **** NO, not a painful procedure under NO anesthetic. I choose not to go to the ER for another IV push due to a flare up.

how about: NEUROMUSCULAR PAIN??

What if your main doctor writes a simple brief note on his business card that will verify your pain levels and your dx's? and signs it.
{ drs phone # would be in view if more details are needed.}

chronic & severe neuromuscular pain??

((Cyn))

I'm so sorry about all of this.

I don't know if this would help, I'm hoping it will.

The last time I was in was in the ER was in Aug for a car wreck.

Since that time I have gotten established with a local pain management doc.
I'm hoping if I have a flare, or a car wreck or another episode where my daughter finds me unconscious(and blue) from sleep apnea that this pain management doc will handle my pain problems.

While I'm in the ER it seems like the more I try to explain the more they think I'm nuts. So I hope if I tell them that I'm a patient of Dr Martin they will call him for treatment instead of trying to figure it out themselves.

I had pretty much given up on any local pain doc understanding, but this doc is great (so far)

p.s. I didn't find the SEEP painful

Great post! Once again, I think that sadly, this is just a general non-understanding from the medical community about TOS.

Yup.

I think the above suggestions are probably the best/only solutions.....have something in writing from your pain doc summarizing things

Funny, I doubt they put the chest pain patient in the psych area because he complains that it feels like there is an elephant standing on his chest

The few times I have been to the ER for literally breathtaking levels of pain from TOS it HAS been for chest pain symptoms and so that's exactly what my chief complaint to them is. Along with a racing heartbeat and excessive sweating/blotchy/clammy (sympathetic neuro response). And that yes, my arms are numb but that it's always that way. That I have a complex TOS case and need them to rule out PEs (Pulmonary Embolisms) ASAP. If you've been sedentary for more than a few hours mention that as well.(Once was a few days after a delayed cross-country flight, the pain had built up over those few days).

That gets me into triage right away, where they take my history and current meds and dosages, when last taken, etc. I've shown them how I can obliterate my pulse by raising my arm. I mention my subclavian bruits(the unusual sound of blood rushing past an obstruction) when my arms are in the "stick-em-up" position. That's enough for them to put me somewhere within eyesight until they can get me on a monitor/in a bed and get an EKG. My opinion is that you have to get to at least that point(on a monitor) before getting any pain/anxiety medication dispensed from any ER. They've give me oxygen as a stopgap to help with the anxiety until they can get a better read of what they're dealing with.

I've been treated nearly the same in 3 different hospital systems with the above scenario. Kaiser was convinced I was just having an anxiety attack(they couldn't speak to the possibility of the chest pain being from TOS) and told me to go ahead and take the Valium I had with me(my pain subsided rapidly on the oxygen), one sent me home with Ativan/Percocet(was offered Dilaudid in-house, which I refused as I wanted to drive myself home), and the other one offered Dilaudid in-house but then sent me home with Percocet(really didn't have too much anxiety that time). Luckily, before this year I didn't take too many pain meds so anything stronger than Vicodin was enough to start settling a flare, then it's taking it easy for a week or so to keep it from peaking again.

Truthfully, I'm only 99% sure each excessive chest pain episode is from TOS(I am, after all, not a medical professional, let alone a cardiologist), so I need THEM to do their jobs and I'll provide as much info as possible to help them do it. The risk of PEs now scares me more than about anything else. I've now been chastised on many occasions not to dismiss ANY lingering chest pain, no matter how sure I am that it is from TOS. That I need to get to the DR or ER as appropriate and get it checked out every time it's more than a minor discomfort.

Oh, the above will probably have you waiting for a chest CT each time...to rule out a PE.
If you have a choice, try to go to a non-trauma center ER. In most trauma centers all the screening equipment(such as CT scanners or X-rays and their attendant techs) gets put on hold whenever trauma cases are known to be coming in and until they're diagnosed, whether they need the equipment or not.(Since they don't know until they're onsite) So you could be waiting hours depending on how busy the trauma department is. If your treating ER doc in a trauma center wants the CT scan report before dispensing your pain meds then you're really screwed.

Bilateral Neurovascular compression with Complex Regional Pain Syndrome