Momz,

As hard as it is, it's critical to stay as calm as you can manage, cause stress will keep the nerves flared up - the more upset you are, the higher your pain. Trust me, I've been through it!

Since you had scar tissue before, it's possible that is again the problem - I was told by my TOS surgeon we would know within 2 months if scar tissue was going to be a big problem after surgery. He's had a LOT of experience and comes highly recommended, so I don't second-guess him when it comes to most things TOS.

One thing you might consider is to speak with some of the top TOS surgeons - the ones who do re-dos - and explain your situation, see if your sx sound as though they could be caused by a return of scar tissue. Perhaps they can give you more insight, whether it's unlikely, or whether they DO see these symptoms presenting in some patients following a scalenectomy. Then it might be worth going to see one or more of these surgeons in person.

If they don't believe it sounds like it's related to the TOS surgery, but more likely to be spine-related, then it's time for a REALLY good second opinion. A teaching hospital attached to a university is usually the best place to look for skilled Drs who have stayed fairly up-to-date. If you strike out there, or there isn't one close, you might want to think about getting a referral to a top
major hospital, but be sure to do some research so you know the department and Drs YOU will need are top-notch. Being in the MidWest, Mayo's has always been praised as the answer for every health crisis, however since being injured I've been told it is not the best facility for treatment of chronic pain, TOS and RSD. I've heard similar tales of Cleveland Clinic. But their other departments may be first-rate, not saying they aren't, just saying do your homework ahead to avoid nasty surprises!

The IV-ketamine did help for several months, probably would have helped longer if I hadn't let all the legal and financial garbage get to me. But that was the last resort, prior to that I also had tried a IV-lidocaine 5 day inpatient program. My body didn't tolerate that, I got really sick as the dose went up around day 3, but if you can tolerate it, it's less scary than the ketamine. While I was on the waiting list for the IV-ketamine I was taking a
rx'd med called mexilitine, a cardio drug that is also used for RSD.

One thing I did find helpful was warm water therapy. I find any other PT too painful - especially the next day. But a pool that is specifically set to a higher temp for arthritis classes doesn't make me chill, I can do gentle exercise, then relax in the hot tub with the jets aimed at my trigger points. As long as I keep the time in the hot tub to 10 minutes, and don't overdo on the exercising, I don't suffer a painful flare the next day. Of course, it's been almost 2 years since insurance stopped all PT, so that's just a pleasant memory.

I really hope you find some answers soon! It's horrible to know there's something really WRONG going on, and the Drs can't figure it out and don't seem to care. We care, and we know what it feels like.

beth