Anyone Have Any Thoughts On The Subject Relating To TOS
CRPS OR CRPD?

http://www.mayoclinic.com/print/comp...l&METHOD=print

I've discussed this with several docs now, and have gotten some mixed responses. TOS (and nerve injuries in general I think) can defintely lead to some of the Sx of CRPS/RSD. What I notice most is hyperalgesia and hyperpathia - thats what my PM chiro termed it, and it seems to fit.

I'm disappointed in this article for several reasons. From what I hear and read, Mayo's reputation as a great medical establishment does not extend to it's care for TOS, RSD or pain management. IMO neither does Cleveland Clinic, at least in the first two ( I know nothing about their pain management Dept); Asa Wilbourn is a neurologist here who performs or oversees EMGs for TOS patients, and he believes in only true TOS, or those patients with definite evidence of nerve damage on EMG/NCV's. He had a "debate" with Dr Roos via articles and letters in medical journals in the 80's I believe in which he claimed TOS was overdiagnosed and calling for a double-blind study. Dr Roos's position was that TOS was underdiagnosed, that by the time evidence shows up on EMG's the damage is usually irreversible, and that asking patients who typically have already suffered severe pain for years to delay surgery 2-3 more years for the sake of a study is inappropriate when their suffering could be relieved much sooner.

Problems I see with this Mayo page are:

It says to see your Dr right away if you have a limb with burning, aching pain that doesn't go away. That's fine, but I would go farther and say - and ask for a referral to a neurologist, because most PCP's have very little knowledge about RSD, and you need to be seen by an expert to get the correct treatment started ASAP!

The 3 stages idea is generally not used so much any more - while people can and do progress to one or more of these stages, it's very individual as to timing, and not all progress to stage 3.

It really doesn't mention much about two of the more significant sx - allodynia
(Things that normally aren't painful cause pain, like being touched) and hyperalgesia (a breeze or a/c on the limb causes burning pain). These are things that you have to think about and guard against every day, and appeared very early on, yet they hardly mention them.

They talk about the possibility of remission, but that usually is as a result of stellate ganglion blocks for upper limbs, or lumbar blocks I believe for lower extremities which they didn't explain, and while they did mention nerve blocks they didn't list the various types.

Also under the treatment section, they don't appear to discuss opiods, pain pumps, warm water therapy as well as many alternative options such as massage techniques, acupuncture, acupressure, meditation, Reiki, etc.
I AM slightly puzzled that they don't mention ketamine at all, even knowing that they are a conservative institution - because it was at the Scottsdale Mayo's Clinic that the first IV-ketamine treatments in the US were done by Dr Hurlbert(sp?).

I'll find and post a couple RSD pages that are done better IMO.

beth

Here are several links that have good information that I find really useful:

http://72.14.203.104/search?q=cache:...&ct=clnk&cd=31

http://www.rsdsa.org/3/treatment/index.html

http://www.rsdhope.org/Showpage.asp?...5&PGCT_ID=3821

http://www.rsdfoundation.org/en/en_c...uidelines.html

I'm not really sure what you were asking about in your question though - can you clarify?

Several of my docs used RSD and CRPS interchangeably.

I am diagnosed with those secondary to TOS. Fibro is third. Depression follows.

I agree with Beth - I am disappointed by Mayo's articles and views.

Frankly, I am finding the longer I know the docs, the more they end up changing their OWN opinions as we talk over the past 5 years, going back on good things they used to think, now being influenced by what I perceive as faulty reasoning by other docs. What's funny to me, is TOS seems to be such a quandary to so many fine docs. I mean, what are we, chimps from outerspace???