[mimichicago]

I've been managing/attempting to ignore (hah!) my CRPS for a while now--basically just modifying my activity and trying to keep my chin up through the bad days. Mainly this is because the many therapists, therapies, and doctors I've tried haven't done a thing. I even did the half-day program at the acclaimed Rehab Institute of Chicago, and I was heartbroken with what turned out, in my case (I know the place has worked miracles for other conditions), to be a blatant money grab--my physical and occupational therapists had never even heard of CRPS/RSD, and my main doctor LITERALLY had the nerve to tell me that yes, the program would make all my pain go away! (She should've compared notes with the program's psychiatrist, who told me on my first day that I was incurable and should accept a lifetime of pain.)

I digress. My question: does anybody know of a doctor in or around Chicago who actually has a grasp on CRPS and might be able to help guide my treatment? I took a long break, and now I'm ready to start trying things again. The break from medical bills was nice, but I'm certainly not getting any better just sitting here.

Thanks for any advice you've got!

[catra121]

I've been wondering the same thing since I live in the Chicago area as well. But basically I have the impression that there just isn't one. Maybe I am just not looking hard enough...but my doctor at the pain clinic diagnosed me and I have done the therapy, am taking the drugs, and basically feel like it is just up to me to push through the pain to continue to live as normal a life as possible. I don't feel like the doctor's or therapists really have anything to offer me now that I have a diagnosis. It's like I'm just done. But if anyone does know of someone I would like to know as well.

Sorry to hear that you are going though the same thing.

[SandyRI]

I have a list of ketamine doctors from Jim Broatch at the RSDSA. In Illinois it lists the following:

Chicago Timothy Lubinow Rush Univ. Med Cntr 312-942-6631
IL Palos Park Renata Variakojis 708-631-5550


Perhaps one of them could help you? I found that the doctors that I visited when I was looking for ketamine treatments knew the most about RSD vs. any of the other docs that I had seen. That is because it is what they do most of the time - RSD.

I hope this helps you. XOXOX Sandy

[daniella]

A girl I used to know with RSD went to rush hospital for pain but not the ketamine. I would maybe call their pain clinic and explain your situation and they could maybe suggest the best pain doc there for rsd.

[wswells]

Originally Posted by mimichicago

I've been managing/attempting to ignore (hah!) my CRPS for a while now--basically just modifying my activity and trying to keep my chin up through the bad days. Mainly this is because the many therapists, therapies, and doctors I've tried haven't done a thing. I even did the half-day program at the acclaimed Rehab Institute of Chicago, and I was heartbroken with what turned out, in my case (I know the place has worked miracles for other conditions), to be a blatant money grab--my physical and occupational therapists had never even heard of CRPS/RSD, and my main doctor LITERALLY had the nerve to tell me that yes, the program would make all my pain go away! (She should've compared notes with the program's psychiatrist, who told me on my first day that I was incurable and should accept a lifetime of pain.)

I digress. My question: does anybody know of a doctor in or around Chicago who actually has a grasp on CRPS and might be able to help guide my treatment? I took a long break, and now I'm ready to start trying things again. The break from medical bills was nice, but I'm certainly not getting any better just sitting here.

Thanks for any advice you've got!

Hi Mimichicago, I to am originally from about 30 miles north of Chicago, but I didn't have RSD then, we moved to FL. in 1984 and I was lifting a patient and he decided he did'nt want to stand anymore, so as he was starting to fall I caught him and ruptured 3 discs in my back. I ended up having 3 back surgeries from that catch. MY ortho Dr. who I really liked told me I had RSD form one or all the surgeries. Anyway, sorry to rant on , There are so many teaching Hospitals in Chicago that I think I would call to see if they have a painmanagement area in their hospital. There is Northwestern Hosp., there is University of chicago hospital, They have a version of University of IL. Med. they must have something like PM at one of these Hospitals, if they don't shame on them, but I would still ask for any referals to Dr's on there staff especially to an anesthesiologist. When I was going thru all the crap that you seem to be going thru, my PCP would admit me and then he would call in an anesthesiologist for an assesment and that's how we got the ball rolling sometimes. Can't hurt to try! Keep trying and I really hope something comes of all this. Your new friend Wendy

[Sandel]

Originally Posted by mimichicago

I've been managing/attempting to ignore (hah!) my CRPS for a while now--basically just modifying my activity and trying to keep my chin up through the bad days. Mainly this is because the many therapists, therapies, and doctors I've tried haven't done a thing. I even did the half-day program at the acclaimed Rehab Institute of Chicago, and I was heartbroken with what turned out, in my case (I know the place has worked miracles for other conditions), to be a blatant money grab--my physical and occupational therapists had never even heard of CRPS/RSD, and my main doctor LITERALLY had the nerve to tell me that yes, the program would make all my pain go away! (She should've compared notes with the program's psychiatrist, who told me on my first day that I was incurable and should accept a lifetime of pain.)

I digress. My question: does anybody know of a doctor in or around Chicago who actually has a grasp on CRPS and might be able to help guide my treatment? I took a long break, and now I'm ready to start trying things again. The break from medical bills was nice, but I'm certainly not getting any better just sitting here.

Thanks for any advice you've got!

Hello my friend.. have you tried this place?

Rehabilitation Institute of Chicago/Chronic Pain Care Center
1030 N. Clark St. Chicago, IL 60610 -- Phone: 312-238-7800
AREAS OF EXPERTISE: Chronic pain; CRPS; fibromyalgia; headache; neuropathic pain
A TOP DOC: R. Norman Harden, M.D

Source:

http://www.facebook.com/topic.php?to...2468621&ref=mf

There may be others listed there as well, good luck Mike.

Ps check out the site while you are there you might be plesantly surprised.
Hugs bud.
~ Sandra.

[mimichicago]

thank you to all the generous, awesome posters that responded! i'm definitely going to check out these suggestions.

catra, i know exactly how you feel. my mom is always pushing me to fight for a solution, my dad is always saying "hey, can you bike yet?" and on my bad days i'm like "you get that this is CHRONIC and PROGRESSIVE, right?" but i also think sometimes that the body WANTS to be well, and that maybe i will find the right combination of things to one day get it back that way. who knows. my optimism/pessimism cycle marches on.

[jenno]

I realize that it is of little benefit for some and is not a realistic option for others, but hyperbaric oxygen treatments may be something to check out. My daughter received treatments at Midwest Hyperbaric Institute in Bolingbrook, IL (a Chicago suburb) and realized immense relief. I pray that you will find positive direction very soon!!

[smdonnell]

Originally Posted by mimichicago

thank you to all the generous, awesome posters that responded! i'm definitely going to check out these suggestions.

catra, i know exactly how you feel. my mom is always pushing me to fight for a solution, my dad is always saying "hey, can you bike yet?" and on my bad days i'm like "you get that this is CHRONIC and PROGRESSIVE, right?" but i also think sometimes that the body WANTS to be well, and that maybe i will find the right combination of things to one day get i back that way. who knows. my optimism/pessimism cycle marches on.

I love Dr. Sandeep Amin at Rush University. He totally gets RSD AND he is a great listener and partner in care. Dr. Lubenow is great too but I have heard that his bedside manner is a bit brusque. This man has helped give me back a big piece of my life. I don't care for Rehab. Inst. of Chicago - I went there several years ago (pre-RSD) for Fibro and they did more harm than good. But that was just me and others love them so... Good Luck to all.

[loretta]

Originally Posted by jenno

I realize that it is of little benefit for some and is not a realistic option for others, but hyperbaric oxygen treatments may be something to check out. My daughter received treatments at Midwest Hyperbaric Institute in Bolingbrook, IL (a Chicago suburb) and realized immense relief. I pray that you will find positive direction very soon!!

Mimi, Glad to hear you are ready for another go around is fighting for good treatment. I've had this 15 years and full body, internal pelvic region. it's not good, but do have good days and sleep now whereas didn't sleep for months when sleep med quit working. My Dr. put me on a 200 person trial study and it works for sleeping. Taking less pain meds than I ded a few years ago.
I'm in Phoenix, AZ and he just built two clinics that both have HBOT and am going to fo thru that treatment.
Jenno, please PM me and let me know how many treatments and length your daughter went thru. Was it 2.4 I'll PM you and would like to hear more about the HBOT Thanks.

Take care Mimi, and let us know how you are doing. loretta