NeuroTalk Support Groups - Crps1 vs crps2

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Crps1 vs crps2 (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/115260-crps1-vs-crps2.html)

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

Quote:

Originally Posted by dreambeliever128 (Post 625376)

Good morning my friend...

I didn't realize you had a rib removed... I am sorry knowing what I had to endure that you had it too..they took two of mine..#1 on each side..6 weeks apart to allow for healing...I was cut under my arm pit both times on each side and having a chest tube in below that each time...Why were yours taken out?????

Luv, Kathy

Quote:

Originally Posted by bobber (Post 624965)

Momof4
You are correct,,there's alot more litature on RSDI than RSDII {causalgia},,this is what I have,,RSDI is what most people have and what is most seen in clinical trials ,RSDI ussually prgresses slowly or in some cases ,levels off,or stays in 1 or 2 limbs or in some cases it will stay in one limb,,theres alot of cases where RSDI will progress thru out the body at a slow pace thru years,,,,research shows that RSDI ussually comes from the form of a injury, such as twisting an ankle,,trauma to a body part affecting a nerve doing damage,,where as RSDII its normally causes by bad trauma to a nerve {QUOTE} from a bullet wound or knife injury ,,,,,,,but not alaways,,other ways that are very common to contract stage 2 is ,arthroscopic surgery to the knee and hip are very common,,,one of the keys to causalgia is bad nerve damage[severed] or entrament,,,,,,,,,,,this is one of the main reasons why its aggressive,,there is still stimula comeing from the nerve,,the spread is so agressive,,,,to answer your question,,,ketamine treatments are sometimes used to re-boot the nervous system,,,but,,in my opinion,,,if you re-boot the system and the nerve entrapment is still there,,,it will probually come back after the body relocates the entrapment,,,im not saying ketamine treatment is useless for RSDII,,,,IM going by what ive read,been told,and own personal therory,,I do know that calming the entraped nerve will slow down the progression,,nerve surgery to free the nerve up is not being done very often anymore in fear of making it worse,,but it is still practiced..The surgeon ussualy free's up the nerve and then places the limb in a boot so that scar tissue doesnt set in from early return of use of the limb,,,,,,there is some information out on the web,,,,,also several studies that ive read[ put in the search engine,[stages of RSD},,,,,what progression that one person with RSDI will get in several years,,,a person with RSDII will get in a matter of months,,,,RSDII IS RSDI on steroids ,,and very hard to treat or control,,

nice post bobber....

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

momof4
Alot of dr;s dont like to do the nerve release sugery anymore ,worried it will make it worse,,in some surgeries,they will afterwards put you foot ,hand ect,,in a boot to keep you from going back to early exercise which causes scar tissue,taking you back to square one,,the problem with the boot is disableing the limb too much will cause rsd to spread or mostly loss of bone density[better said] to set in,,alot of people will get a removable boot to take off a few hrs a day...what im hearing now ,is there aresome dr;s going back to the release surgery practise with new techniques that are very favorable,,,,If I had a choice[ I do not have any insurance now],,,I would elect for the surgery,on the merit fact that my RSD is spreading so fast now,I think it would benifit a person in my perdicament,,,,but someone with a slow progression,,I would not advise it,,,,I have spoken to some who and read where after the release,,the RSD will recede in 2 occasions,,it was full body,,,A lady had a entrapment release in her ankle,and even the RSD in her arms and shoulders receded.....I do not recommend any surgerys unless nesssesary,,,,,but for me in my case,,,I would in a heartbeat,,its spreading agressive anyway,,,,FYI,,,I also heard that theyeven do trigger point injections aorund the entraped nerve to slow it down,,,,,,,,,,I wish you well,all of you,,,,,,,,,,and thanks for your concerns mike,,,WE all need a pat on the head once in a while,,,,,bobber

Sukadog, Dont worry. Maybe yours was found and treated early enough to keep it localized. Mine wasnt acknowedged til a year so it was already chronic. That is why it is so important that all Drs. are updated and aware of RSD(especially Ortho!) because it is known now that if treated within the first 6 months you have a better outcome.

thank you so much for encouragment!

Quote:

Originally Posted by RNcrps2 (Post 626422)

thank you!!! i'm still doing ok and kind of in a holding pattern. god bless!

You head it right on the head....

Quote:

Originally Posted by RNcrps2 (Post 624904)

Tell me. I know the difference and i know they are treated the same BUT why when i read treatment trials most/all are using CRPS1. I actually have yet to find one that says using CRPS2 patients. I have read Dr. S last paper and i believe it had people with nerve injuries but they were not picked to receive ketamine they got the placebo(I know it was a double blind study so it wasnt purposely picked that way)
My question is- Is it because when a nerve is involved the results/outcome wont be as good as with CRPS1? That logically makes sense to me because if there is no nerve damage than treatments might work better. Whereas if a nerve is damaged even if ketamine works on the CRPS there is still a nerve injured . Has anyone read an article using CRPS2 patients? momof4

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.