I know crazy right, Cyndy.... At the time I didn't question his motives as he claimed he need to cut it to have room to work inside my chest....and he was the best thoraic surgeon here... AND to boot he is now retired as he developed a brain tumor and moved out of the area...... this was 20 yrs. ago..following a bad car accident.... I would love to pM you..how do I look up your name for that..invite me to be your friend..then I will be in touch.. mine is under keep smilin...

Hugz, my friend, Kathy

I've not heard of the nerve being cut with TOS, I did want to say though, RSD comes with TOS surgery more often then not. You will see a lot of the TOS forum people eventually move over to here due to the RSD. I spent years on the TOS forum before coming here.

Drs. do TOS surgery differently. I had my first rib taken out on the right side by a Dr. in Denver that just went through the neck area, some cut people up quite a bit for the surgery. I have seen 2 done differently then mine.

There is no cure for the TOS either, the surgery usually just helps relieve some of the pain and symptoms. I also had 4 inches of muscle taken out on the right side to relieve the TOS pain.

Ada

Thanks Bobber for your great explanation. I have researched and have come up with the same conclusion. It makes total sense to me. I needed to hear someone else say it. I also have CRPS2. Originally had a few injuries and CRPS was missed(had all symptoms of CRPS and one Dr. suggested it before surgery but didnt follow thru). One injury was a major nerve entrapment so had surgery to decompress. After surgery it was calm while i did nothing, once PT started the CRPS spread quickly to all 4 limbs and face. (all the while ortho continued to deny it was CRPS!) All Drs. still think it is compressed due to the spread and pain at original site. Ortho asked if i want to do surgery again-she said new info reports if compression and have CRPS it is best to try to relieve compression. This does make sense to me. Pain Drs. say no way! Unfortunately it is a viscious cycle-how will it stop if the nerve is still compressed. Has anyone had surgery after knowing they had CRPS to relieve the original compression??? Maybe i could try ketamine right before surgery to hold me over from spreading. Please let me know. momof4

i really got scared when i read about this. my dr says because mine is a direct nerve injury the rsd will stay where it is. it's just the ulnar nerve that's hurt so it's just the ulnar nerve's range that's affected. i'm 18 months in and it's unchanged. i really hope and pray that it stays right where it is, that was my big scare when he first diagnosed it and gave me info. but both my pain drs say that rsd2 stays at the injury site. i'm so sorry that yours didn't and i'm really hoping that my drs are right about this. somehow.

Sukadog
Im glad that you are 18 months into this without a spread,,,what seperates RSDI and RSDII is the severity of the damage done to the nerve,RSDII is ussually [asposted above[ from a knief wound or bullet wound or from arthoscopic surgery to the knee or hip,,,,read my upper post,some didnt understand what i wrote,,its simple to understand,,,RSDI and RSDII can both spread at different rates[which i noted] but IN MOST CASES.RSDI spreads slow over a period of years where as RSDII Causalgia,,most ALWAYS spreads at an ACCELERATED RATE WHICH DENOTES IT to be the worst of the two,,MOST often a person with RSDI spread over a few years,,will be the equivalent to the a acouple months spread of RSDII{FACT}{.....sorry that some still didnt get it,,,,,,,,,good luck sukadog

CRPS II is a little more complicated because of the nerve damage that exist in that type of patient. Nerve damage brings so many other what if's because it is so hard to find first of all and then just has hard to correct. I had major damage to my Ulnar Nerve/Left arm from a broken arm.I needed major surgery,and more than one, to get the arm to at least function at all. I was lucky once I found the correct surgeon and facility to correct the problem. I have been told that it is amazing that I was able to get back my range in the arm but I still do not have any endurance or strenght etc, in the arm and limits me quite a bit. But believe it or not if you did not know I had or looked real carefull you would not realize I had RSD. The surgeon who finally corrected everything did a great job hiding these long, long, scars and saw the case once he committed, which was not easy, because he was the third surgeon who would have been in there.

My experience is once a PM doctor or surgeon here you have nerve damage it's like taboo, I quess for the reasons I explained above.

I have done all the protocol treatments, SGB, Ketamine 5 day inpatient, not coma, epidural of all kinds, medications etc, with good results when it comes to the RSD Portions but the nerve condition is still there. At this point 5 years later I am working PT and trying to go about things as before it happened. Some days are harder than others but I find if I stress over it each and every day it makes me worse, depressed and really all of that is so agrivating to any RSD patient. Mind you sometimes it's easier said than done.

Sorry to ramble.