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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I am sooooo angry
Feb 21, 2009
Hello everyone!
Well, I can actually say I've had my first "pain management" visit. I brought my husband along since the purpose of the appt was to discuss blocks and lidocaine infusions -- Well, what a TOTAL waste of time! Get this, this stupid doc begins the appt by sitting down and asks me "well, what do you do for fun?" I, of course give respect to doctors so I answered it but as I left the place, I thought to myself what in the heck does that have to do with pain managment???? And then, he proceeds to tell me that "there as a patient that had a similar name as yours in the 90's -- that wasn't you, was it?" Is that totally off the wall, or what??? Ya know, I wish I would have said something right then and there, but I just didn't think of it at that second. So then he does the physical exam and says "if I saw you walking down the street, I wouldn't know you have RSD, would you agree?"
He told me that the blocks really are highly unlikely to help me, and the same for the infusion. He told me that the infusion would have to be done in a recovery room of the hospital with a nurse trained in cardiac because lidocaine has many risks. #1 it can stop your heart, it can change the rhythm of your heart, and it can cause seizures. He says to me "I'm an anestheiologist so I know what this stuff can do." So by now, I'm getting pretty peeved but I'm sitting there like a good patient and he takes a phone call and gets the guys number and says he'll call him back in 10-15 minutes. Then after talking with my husband and I for about that period of time, he says "well, our time is up now, I have to call this guy back." We said nothing, but we left and I will not be returning to this schmuck!!!! His consult fee is probably gonna be 300 bucks so thank goodness for my insurance. So, I'm going to continue taking my meds, and that's about it. My prayer is that my RSD doesn't get worse than where it is today. I was able to do Disneyland without being in a chair and that surprised me a bit. I did sit frequently but the day was totally great! Beautiful weather and hardly anybody there -- The longest we waited was for Small World cuz it was recently redone this Monday, and we went Wednesday. All the other rides had a wait of about 15-20 minutes -- Not bad at all.
I spent the entire evening peeved beyond belief -- What makes me the maddest is that my husband and I just sat there and didn't say anything! I guess we were in disbelief.
So, I learned to speak up if there's ever a next time with a doctor like him. I learned to not accept the ridiculous. I learned that I will never, ever tolerate being spoken to in a condescending manner.
I was very blessed in having this whole week off and my daughter who is a senior in high school also had it off. My husband's company is "cost-cutting" so mandated that all 50 employees take a week vacation between January and March so he took this week off as well. He spruced up my rose garden so that's always nice.
It's really late so I gotta get some sleep.
I also realized that this dumb schmuck doctor wasn't worth me being so darn angry.
Thank you all for listening --
Take good care,
Deb
Hi Deb

Sucks to get your hopes up and then just have them bashed by a doc with an ego bigger than his brain. What a di**head!! Keep on plugging. Now you know who not to use.

BTW - my PM guys in Boston told me the same exact thing about lidocaine. They didn't discourage me at all, but did say that you needed to be very carefully monitored until the dose was correctly titrated to your body's tolerance levels. They hook you up to cardiac monitors and track your pulse and blood pressure while the infusion is done. But they only do it for an hour, once every few weeks, and then switch you over to the oral equivalent. It doesn't sound as intense as what Michelle received in Philly. (Michelle - I am SO HAPPY that you talk to us about this stuff all the time, thank you!)

WC has denied just about everything so far, so I have put the lidocaine on hold for now. I've had 3 SGB (no bills have come in the mail yet, but my personal insurance may not have adjudicated everything - the Boston hospital is out of network and I expect to be charged 20%). I am almost certain that lidocaine is going to be considered experimental by United Healthcare. Does anyone know whether or not that is the case?

Keep trying, keep asking around, what about your personal care physician, can he recommend someone who can recommend someone, etc. If you are on a wait list keep calling. Receptionists can help you perhaps, ask them how you can get in with the best docs. I know that my first PM appt in RI was booked by my orthopedist's secretary and I got in there the next day. Do you have a good PT group around? My PT is great, and he knows a whole lot about which doctors are good and which aren't.

These turdball docs with the huge egos are the ones that are going to be brought low by them one day - it does tend to catch up with a lot of them
eventually. And if doesn't, who cares. Go check out the roses your husband trimmed for you....life is too short. How lucky we are to have such supportive spouses. And how lucky you are to live where the roses are blooming!!! It's way too cold here in RI.

Take care and stay focused, I am happy that you are still walking and were able to enjoy a nice family vacation...XOXOX Sandy
Gosh I'd be angry too. It is the lidocaine infusions that save my life.

I lost my dear friend and Dr years ago. Seriously he left around 2002. I have had one until recently as he closed his clinic, but it took me 18 months to get into him. And was his only patient that got the lidocaine infusions. I was his pet project. Yes my blood pressure would go funky if they did it faster than normal, but within 20 minutes of ending the infusion (I only got it for half an hour), my blood pressure would normalize. Everything else tolerated it well. I would be out the door sometimes as quick as that 20 minutes after the block. Unfortunately I'm looking for another clinic, as mine has closed. The dr that was doing it, had to give it up for more time in the OR. :( I miss him horribly. I was one of the lucky ones that got in for one more block, before the clinic officially closed. But even after 16 yrs of RSD, the lidocaine still work for me. The SGB only worked a couple days the last time I had one.

I wish you luck, and a wonderful understanding dr, like the one I had back in 2002....

teri
Hey Everyone,
Sorry I've been out of touch - wanted to say something I learned recently about the PM community in San Diego - I recently asked my PM doc about OP lidocaine infusion in the San Diego area and he said "than he's not aware of anyone that does them in the area for CRPS because there is no proof that they work so insurance companies won't reimburse for the procedures" that's one of the most honest answers I've heard in a long time - he did say that he's aware of some folks in LA that will do it. I hate that it's always about money but at least he gave an honest answer. I'm on my way back to FL next week - so I'm going to talk to my PM there and see if she will do the procedure there ... it just seems that there are fewer and fewer places that we can get the help we need. Best of luck to all of you in staying pain free!





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