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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hey Sandy,
I know we've talked about this before I think.. Don't hold me to that.. lol.. Its been a long day at work.. my brain is fried lol...
Anyway.. I've had the blocks and the infusion..
For me.. Infusion all the way.. nothing compares to it.. I've had three blocks.. nothing but trouble.. I would just have more pain afterwards.. Gave up after that.. Then after I saw Dr Schwartzman.. He did the infusions.. I've had three of them.. Each one I improved.. I went from not walking, not working for 3 yrs.. Now working full time..
My infusions sound a little different though.. My infusions were inpatient... For five days.. around the clock.. so it might take you a little longer to get the affects that I have...
I say go for it.. I mean you have read all these post.. A lot of us have had blocks.. most of it did not to much for us..
I've meant a lot of pts who were having the infusions while in the hospital.. All of them were so relieved.. Some of them needed more then others but it still gave us a better quality of life..
Its so nice hear that another dr is willing to do this treatment.. I thought Dr Schwartzman was one of the only ones....Knowing its not exactly the same amount of infusion.. Its still good to here....
Go for it girlfriend.. lol.. Your life will improve so much.. I am living proof.. along with so many other pts who have had it...
Let me know.. and I am here for you if you have any other questions..
Michelle
Hi Michelle

It's so good to hear from you!

I am happy that you returning to work FT!! Especially since it is what you want! Best of luck to you, I will say a prayer that it goes smoothly!

Make sure that you take care of yourself in the process!! Get enough sleep, take some vitamins, eat well, etc. It's going to be a change for your body, so just be careful!

Thanks for your reply about the lidocaine. We've definitely talked about it before, I am just concerned because all that is offered is a [U]one hour [/U]infusion every few weeks. I know you found a difference with lidocaine, but you got the inpatient infusions that were significantly longer. I need to take a day out of work each time and travel over an hour to Boston each way to have these done. The SG block I had today has already worn off, so I think I am ready to move on to another option. But I don't know if I am going in the right direction, if you know what I mean. If the one hour infusions work then I would be offered an oral lidocaine med (Mexilitene or something like that).

Actually, there might not be a whole lot else left. I know that I don't want to explore a scs at this point. ... now I am just rambling so I will go.

Regards, Sandy
Sandy,
I look at this way.. You've tried the block.. You got little relief.. You took off work for them.. So why not try the lidocaine.. You really don't have anything to lose, but you may have a lot to gain.. The only thing that confuses me is what you saying.. The one hr infusion every few weeks..
This is what I am thinking... You'll be going every few weeks.. and each week you go they up the infusion.. until they get the proper amount in you.. and if you get the relief from it then they start you on the mexilitene..
This is how it worked for me.. I think its just done at a much faster pace..
I went in for the five day.. started out the first day with a low infusion.. I think I started at 12.. upping it everyday.. by the fifth day its in your system.. and they send you home taking the mexilitene..
My question is.. Are they going to start you on the mexilitene after the first if you get some relief? If so.. Then it all makes sense...
I would say go for it.. Its worth the try.. Why stay in pain when you have the possibility of feeling better...
I am just so happy to hear another dr offering it..
Look forward to hearing from you...
Michelle
Hello Everyone,
Well, I've tried just about every pain management doctor in the San Diego area to see if they will do the Lidocaine Infusion. Michelle has said that she believes strongly in them and got lots of relief from them. I've thought about giving it a try. But, doctors don't do them and I'd like to find out why. I only found 1 doctor that did them & the 1 doctor said he hasn't done one in over 20 years (and I thought it was a relatively new procedure) because insurance doesn't pay for it, and they're about $2,000.00 -- Okay, so what I don't understand is that statistically, the blocks don't help that many people, and the ones they do help -- the relief is pretty brief and they are 5-6 thousand so why would insurance companies pay for those, but not the Lidocaine? I'm hoping somebody has the answer to that cuz I'm really curious. I'm very uneducated on the subject of infusions, but they seem so much safer (IV in the arm versus huge needle in the back) and those blocks can cause spread and that scares me to death! I'm having a hard time understanding this.
I wish everyone a nice day tomorrow -- I am off tomorrow and I just might hang out in bed (it's suppose to rain) and read and relax for the whole day!
Hugs,
Deb





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