2nd opinion
 

Hello to all. I am new to this website and to CRPS. I have been diagnosed with CRPS in the last 6 months. I have suffered with this chest pain/arm burning for over a year. For me the trauma was a VATS procedure that removed 10% of my lung due to a spontaneous pnuemothroax. I had/have so many questions. This website has helped me understand quiet a bit of what has been going on with me. I want to thank you all for sharing your knowledge. I have really felt lost and alone since this battle started. My question is about where to go get a 2nd opinion. Who is more knowledgeable about this horrible condition? And if it is confirmed where do you go for treatment. What type of doctor should be over your treatment? I am in Eastern Pennsylvania and have no clue where to go. Is there anyone that can advise on where to go in this location? :confused:

Terristie,
I am from lower Delaware and go to Baltimore PM. From what I know there is some good dr.'s in Philadelphia and someone who is doing Ketamine in Wilmington. There is a list of Dr.'s on the RSDSA site as well as American Pain Foundation. I would also like to extend a warm gentle welcome to our family. I don't quite consider it to be a group anymore. This is my family. Someone to laugh with, cry with, yell at. etc. The family is awesome and I am glad your a part of it. :hug:

Just don't yell at me, I can't handle the pressure... :Dancing-Chilli:

P.S.: Welcome to the family Terristie

Thank you Jimbo and Alt1268 for your welcome into the family!
I guess anyone who understands this pain would be more likely to accept your rants and overall crappy attitude on bad days. Some days my family will barely speak. They do it out of love as they just don't understand or know what to do.
I will check out the websites and see if I can find someone there. I just didn't want to call blindly and end up w/someone who can't help. I feel like I have put my family through alot with the endless tests and appts this year. I was hoping to see someone familiar with this for a 2nd opinion and then use their knowledge to lay out a treatment plan.
I have family in Baltimore and my mother has asked me to consider coming to a doctor there who specializes in CRPS. It is a 3 hour ride and would like to end up a bit closer. I can't imagine having to drive there in a full on "flare up".
Again,,,thanks to you both for being so welcoming!! :)

I think it's definitely important to see someone who specialized in CRPS and is very familiar with it. Unfortunately sometime you just can't tell until you go in and speak to the doctor. Some people say they specialize in it and then you get there and they tell you something like, "RSD doesn't spread." or "RSD can only be in a hand or foot...not anywhere else." In those cases...even though their literature SAYS they specialize in it...they obviously just are listing it with a bunch of other things.

Typically...when looking at a treatment plan you are going to need a plan that involves multiple doctors. I think neurologist, pain management, and physical therapist are fairly typical, but others find relief from chiropractors, physiatrists, general practitioners, and others. What works best varies from person to person and depends a lot on who you personally feel most comfortable with.

Physical therapy has been really key to my treatment and right now I am working with a fabulous physical therapist who has been VERY helpful in getting me back some function. Neurologists were not especially helpful...but that is probably because I never got to one who was knowledgeable about CRPS. Pain management doctors are key for getting your pain under control and manageing your medications, performing blocks, recommending other procedures, etc. My general practitioner has been wonderful for me right now in helping me treat some of the other symptoms that have come with the CRPS (dizziness, blurry vision, balance problems, etc). She's also very compassionate which is something I needed after a lot of bad experiences and getting bounced around from one doc to the next.

But it's definitely worth a 3 hour drive to see someone who is good and knowledgeable. if you aren't confident about your ability to drive then see if you can have someone else go with you.

Good luck! I hope you are able to sort it all out and find the answers that you are looking for.

Dr Philip Getson 856-983-7246. Marlton, NJ. He's one of the best.

Good luck...

Welcome To our family... our journey can be up hill but the support and knowledge is endless..

take care, Kathy

Thanks for all the info!

You mention blurry vision. There were a few times where I just couldn't see a thing. It was like I was in the dark but my eyes wouldn't adjust. It lasted maybe 60 seconds not sure about that cause I couldn't see the clock. It felt like minutes but I am sure it wasn't. Is this typical in patients with RSD?

I don't know if anything is "typical" with RSD...but in my case they have concluded that it is connected with the RSD. I've read in a few places online that over time you can suffer from blurry vision, dizziness, nausea, ringing in the ears, loss of balance, etc. I didn't have these in the very beginning...they have come on since the RSD spread. My spells of blurry vision can last anywhere from 30 seconds to a couple of hours (this is more rare but has happened and scared the crud out of me). There never really seems to be a cause either except that I seem to get these spells when the pain gets worse throughout the day.

My vision get blurry at times too. Also got that ringing in my ears a lot.
It seems my blurry vision mostly happens when I'm reading but sometimes while watching T.V.
Starting to get dizzy more to where I just want to go lay down.
I feel bad for my dog because I know she misses running around outside as much as I do. I just thought I'd jump in with my part...:Popcorn: