Do you have any recommendations on a place to stay while there? The administrative person sent me a list of hotels and the prices were very reasonable. I am going by myself the first trip and hope to avoid renting a car as driving in unfamiliar territory in my condition is not wise.[/QUOTE]

I actually stayed a night at the Baylor Park Plaza, which is the hotel there on the hospital grounds. It's definitely no-frills, but it's clean and quiet and you can walk to your appointment without ever going outdoors. The water pressure is terrible, but for a brief stay it's a really good (and inexpensive) option, particularly if you want to minimize driving (and driving in Dallas is nerve-wracking even under the best conditions). If you decide to stay at the BPP, there is a nice cafe on the lobby floor and several diners within walking distance (although it's not the best area to be walking around at night; daytime is no problem) so getting fed is easy. Unfortunately, the nicest hotels are the furthest away from the hospital, which is going to necessitate a vehicle; there are several taxi services, though.

My worst flare up on my "good" side (which is my left) happened right after I got the scalene block on the right side, which was the first pain relief I'd had on the right in years. I was terrified that since that happened, the same thing would happen if the surgery helped the right side. Fortunately, it hasn't been a problem so far. Dr. P says it's not uncommon for the "good" side to get relief once the "bad" side is corrected; I certainly hope that's the case for you.

In the meantime, I'm glad you are getting relief from the botox! I totally empathize with the medial scapular pain; it's a crippler! It's interesting, though, my muscles reacted differently than yours - my shoulder dropped the same way yours does when you have a bad flare-up, but while my back muscles atrophied like yours, my scalenes hypertrophied. Dr. Ahn called me "bull-necked" - one of the many eyebrow-raising things he said to me, but I digress - and in one of my MRIs it almost looks like I've grown a hump on my neck! My shoulder is still out-of-place, but I can move it to the right place now, which I couldn't before, and hopefully PT will improve it to a place closer to "normal." And no more bull-necked hump, probably due to a combination of having the muscle removal, reducing inflammation, and not constantly trying to hold my shoulder in a weird position to alleviate the pain.

It never ceases to amaze me how many presentations this condition can have - reading this forum has been a real education. Maybe that's part of why doctors don't diagnose it well.

To Losinghope:

How are you doing? I've been keeping up with your progress. Have you gone back for your checkup with Dr. Pearl yet? How are you feeling? Are you still glad you had the surgery? Hope you have a great day.

LH,

Ditto what the other person said. How are you doing?

I have taken a nose dive in the past week. I assume the botox wore off much faster than I was told but this is unbearable. Pain meds are not much help although I guess I could take more but I hate them and want to get rid of them so bad.

Does anyone have a suggestion for meds to help severe TOS? I go to pain management next week.

My appointment in Dallas is two weeks away. I hurt so bad I wish I had opted for the "do it all in one trip" approach. Hopefully they will be able to schedule the surgery fairly soon after the visit.

I really feel for everyone who is suffering with this. I have had it 7 years but went undiagnosed or misdiagnosed the first 6 1/2. Hopefully relief is on the way.

Hey guys, thanks for checking in on me! I've come down with some virus that's going around, so I'll write more when I'm more coherent.
But for now, to romans8 - I don't know which drugs you've already tried, but for me, a combination of a nerve drug (in my case Lyrica), a muscle relaxant (Flexeril), and an OTC NSAID along with Toradol injections at least took the edge off without making me lose consciousness. Or, since you're (hopefully) just needing short-term relief, give in and let them put you on narcotics; they work. Just don't plan on doing much else. ;-) I know you hate to take the drugs, but being in constant pain will just exhaust you physically, mentally and emotionally. I'm sorry your botox didn't last any longer. :-(

I came down with the flu a few weeks before my first TOS surgery and it flared the TOS to my worst point. I wish you luck that you get over your virus very soon.

Toradol is the miracle drug for TOS and surgical recovery in my opinion, it's too bad that it is harmful to your boy and can't be taken continuously for more than a few days (5 days max but my surgeon prefers to limit it to 3 days to be safe).

Marc - it's interesting you say that; my left ("good") side flared up a little during this virus, and I was already sore from work. I was attributing the left side flare up to laying around in bed for days on end, but maybe it also has to do with systemic inflammation caused by illness?

tosmother - I have not had my recheck appointment yet. I was supposed to have it next week, but my ride weaseled out on me, so now I'm going on the 24th. Other than this virus, I've been doing okay. I had a rough week at work that left me sore, but not like what I was experiencing prior to surgery so, yes, still very glad I had the surgery. :-) I was feeling pretty discouraged when I got sore and sick at the same time, initially blaming the soreness/pain for the fact that I felt crappy all over. Prior to surgery I did have pain episodes so severe that they caused fever spikes, nausea and vomiting, and I was scared that was starting to happen again - it was almost a relief to find I had a virus.

Losing Hope: I was literally tearing up reading your last post. I'm so glad there's hope. Goodluck with your appointment on the 24th, and keep us informed.

Thanks, and same to you (re: your Dec appt/surgery and progress)! :-)

To mytea: I've PM'd you; try seeing if you can reply back now.

It looks like Carpenter is pitching tonight. I might have to check that out. I notice when they talk about him, they just say he had a "nerve problem". I guess if they said Thoracic Outlet Syndrome, people would just say, "Huh? What?" We've all heard that. LOL

So Chris Carpenter pitched for 5 and 2/3 innings, didn't allow any runs, and ends up being "Player of the game." That's pretty darn impressive.