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,
I'm so sorry Deb. I'm dealing with horrible pain management guys too! I'm beginning to think the Lidocane thing is a myth. I've asked about it at two places and both just blew it off like it doesn't work. I did manage to get a prescription for baclofen, out of the pain management doctor he seemed stunned that I even asked about it, and need to see my primary guy about a different anti-anxiety drug. I just want to scream at them that if they would give me better treatment that I wouldn't be quite so anxious. Hope things get better. Try for a second opinion and hope it goes better than mine.
Last edited by US miss; 02-21-2009 at 02:52 AM.
Reason: fix grammar
Hey guys.. Sorry to just jump into the conversation.. I haven't been on board here for a while.. I just wanted to comment about the lidocaine infusions...
They are not a myth.. It really does work... It does not cure the RSD but it improves your quality of life...
I've had 3 of them done.. I went from not walking to going back to work full time.. The first really didn't do a whole lot..I mean took a lot of the pain away but I still had some problems.. It took three for me to get where I am today..
Your PM dr is right.. It is dangerous.. It will change your heart rate. I was monitored for closely in a inpatient hospital stay for five days... I stayed on the cardio floor.. I had monitors hooked up 24/7...
The only side affect was sleeping alot.. That was do to the heart rate and meds.
Lidocaine has been around for yrs.. for RSD... There just was not any awareness..
Lidocaine was out before ketamine treatments.. My dr told me that .. They are starting to find that the ketamine has more successful outcomes....
I have RSD full body.. for almost 8 yrs now.. I am not sure why your dr feels that it won't help.. Hey I rather try that then nothing.. Then going back to square one..
Some DRs just don't have bedside manners.. He sounds like one of them.. I would start looking for another one.. One that you can communicate with.. Thats so important..to be able to talk and tell that dr anything and be able to ask any questions you can...
wish you luck..
I have been waiting with anticipation to see your post after your appointment as it was such an important appointment for you !
I am so sorry that your first experience with a pain management doctor was not a good one. I am realizing now, as with my own situation as well, that not all doctors "are created equal !!" I cannot believe that some of these doctors have taken the hypocratic oath, that promise to help people and "harm none."
Obviously this doctor was not a good match for you and furthermore made irrelevant and insulting statements, was superficial and not willing to be more open minded. I thought this was the doc who said he does the infusions!!! Was this a different doc??
Deb, don't give up !! Keep searching, and try to engage your rheumy doctor in the search as well. I know the search is so exhausting.....
I had an appt with a Neurologist (this was with my own health insurance from work because of neuropathy I am developing) (not the worker comp doctors) and I asked him what he thought of lidocaine infusions for my RSD. He shook his head and pointed to his heart and said "too many risks." He did that all in about three seconds. I wanted to remind him about the successes with licocaine infusions, how it has taken people from wheel chairs to having a life but I didn't .....I always think of the things I want to say after I've left the appt.!!!!! So, here again, we have a closed book, and not even a willingness to explain and explore the possiblility with me, and maybe refer me to someone who has more info!
I brought the topic up to my pain management doctor and she said she doesnt do them and that was the end of that..not even a "well, let's explore this further and I'll see what I can do to get more information about this for you.." I get so frustrated.....
We have to be our own doctors and advocates and be more assertive!!!!
I am not happy with my pain management doctor. She is not an anasthesiolgist..I had my block yesterday and she missed the spot and had to take the needle out and insert it again, and my back muscles went into spasm..I was so upset...I need a P.M. doc who is an anasthesiologist with more experience..her office staff never gives her my messages to her and they take forever to fax in authorizations. If I don't call them to ask if an authorization has been faxed yet, they would procrastinate for weeks.
But I know we can't give up !!!
Thank goodness we have the boards for support , feedback and information!!
Ya made it through Disneyland!! That's so great!! Stay positive, keep searching, and listen to your instincts.
*Big Big Hugs* for you all! I'm so sorry you've gone through this. Tigerlily is right, don't give up. There are good docs out there. They just aren't easy to find. I am so thankful everyday, especially when I read things like this, that I have a good doc who takes time to listen to me and give me whatever I feel I need for my rsd. I was a wc case and of the docs I saw, minus 2 Ime's and I think one other one, they dx rsd but the next appt backpedaled and did everything in their power to NOT say rsd. LOL When I went to my doc now, it was just a matter of fact statement and they have no problem saying it's the rsd or whatever. It floored me the first few times. I hadn't even realized I was afraid to say rsd to a doc until I went there. Life is good now, well....as good as it can be.
This is what I wish for you Deb and alice. Keep going and don't settle for any less than the best! I'm here cheering you on!
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
I think the cardiac thing explains why nobody will even talk to me about them. I have a DNR order and a Living Will. Every time I see someone they ask if that's a DNR and I reply H*** Yes it is. It took me forever to get the guy to give it to me and no I do not want to reconsider. (Why are those things so hard to get and why is it so hard for them to believe that I want it? ) I'm thinking that is why nobody will even discuss it with me. Maybe you have one too and that's the problem? Thanks guys, I think you've solved one of the great mysteries of my bad pain management for me.
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....
Hello everyone - THANKS for all your support! I'm realizing that everyone here on the boards care so much about what happens to us. I'm still kinda peeved so I'm workin on the "let it go" part. My RSD doctor is actually a doc I like. Been seein him since September of 07 and I'm stickin with him.
Tigerlily -- Yes, this was the guy who I spoke with on the phone about the infusions so that's why I was anticipating a much better appointment than what I got. The schmuck is actually somebody well known in the PM area. Again, I'm just grateful that the RSD isn't at a place where I'm screaming with pain.
Did I tell ya that at my last doc appt I said that I had a lumpy painful "thing" on my left leg (the RSD injury leg)? I almost died cuz it's a bloodclot but it's ok because it's close to the surface of my skin. Have to take aspirin daily and put heat on it.
For now, I've got an appt with my RSD doc in late March.
Well, it's late and vacation is over -- Have to return to reality tomorrow and work all day. The kids will be soooo excited and chatty telling us what they did, where they went, etc etc etc. It takes us about a week to get them back to being focused and stuff. Middle school is such a fun age.
Thanks again for all your replies. I care about all of you, and I wish us all the best of luck in our search for compassionate doctors --
Hugs to all,
I hope you had a good first day back at work and I'm so glad you had a whole week off with your family and had some fun with Goody and Mickey!!
The only thing I can think of that explains what happened at your appointment is that maybe the P.M. doc you consulted didn't think it was the right time or circumstance for an infusion yet..otherwise I am still puzzled by his comments, his strange questions, and his flippant behavior!!! He really should have given you more information, more time, more respect and more explanation...Why are some docs so short on giving us the information we need and deserve !!!!!!!!! Sometimes I have to beg for information, or make myself obnoxious by asking so many questions..but that's because they don't give us enough information or time!!!
I don't think some of the docs realize how intelligent we are!!! Some think they think they can just blow us off and treat us like dolts!! Grrrrrrrr !!
I'm glad you have a good doc that you can stick with while you continue to work on ways to get better!!!
I think I'm going to get some physical therapy authorized and I found a center that has a therapy pool (92 degrees !!) near where I work. I hope it can all come together..Only problem is I'm out of sick leave so' I'll have to go during my lunch time and use some vacation time that I still have left.. One of the therapists actually knows what RSD is !!! and has another person that he treats who has RSD..I will flip if WC doesn't authorized this physical therapy..my RSD fangs will come out!!!! I desperately need it...
I did some strectching tonight and it felt so good to move my achy body!!
I might look into a yoga class if I have any energy left at the end of the week! A yoga DVD might be a better idea!
Take care Debs!!
Work went really well, and it's always so great to see the kids. Our weather got a bit cooler, around 66 degrees.
Hey, I think yoga is a great idea. Best of luck to you, let us know how it goes. And, a warm water PT sounds wonderful too -- We have a community pool not too far away that we use once it warms up. Does anyone know if jacuuzi's are good for us? Or, maybe everyone reacts differently to that too -- I tell ya, this RSD is such weird and painful stuff.
Well, that's about it for now. You take good care,
Hugs to you too,
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!