Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 06-16-2012, 10:38 PM #1
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Default Univ. of Colorado Hosp. RSD Docs / Nuero Dept ?

Has anyone had any experience with the University of Colorado Hospital and their RSD/CRPS treatment, doctors, their Nuero Dept or pain management clinic? Would love any feedback that you may have. Thank you in advance!
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Old 06-18-2012, 05:41 PM #2
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Originally Posted by Vrae View Post
Has anyone had any experience with the University of Colorado Hospital and their RSD/CRPS treatment, doctors, their Nuero Dept or pain management clinic? Would love any feedback that you may have. Thank you in advance!
I went to see Dr. Alan Brewer several times, I wouldn't recommend him at all. I once had a procedure with him, where he made a mistake and I had a really bad side effect. He called an ambulance, but didn't tell them about my RSD, or the procedure he'd done or any of the medications he gave me. At the ER they thought I was a druggie, because they didn't have my history.

Hope this helps.
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Old 06-20-2012, 12:10 AM #3
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At the ER they thought I was a druggie, because they didn't have my history.

Hope this helps.[/QUOTE]

I have been to their ER too and they treated me the same way. nevermind the stack of medical records i had with me. very frustrating! The whole time i'm thinking... really?! and i'm saying, PLEASE look up my condition. PLEASE help me get through this break through pain. I started to leave and the nurse says i'm being combative as she's waiving a shot of dilaudid at me "don't you want your medicine?" I could barely stand or walk. The head nurse even said "supposed RSD". I'm like my God people, look at my medical records already. I had a back surgery go horrible wrong and I woke up this way.

I saw something the other day that I feel like I need to print off and hand out often...

My disease is more real than your imaginary medical expertise!

It does help. thank you so much for taking time to respond. I am going to be forced to use their nuero dept and i am praying that i can find one good doc who is or is willing to be invested in helping me with all things RSD.
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Old 06-20-2012, 08:51 AM #4
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did you guys check the colorado laws on rsd? here in Delaware there is a law stating health care workers are to be educated on our disease. (even though It is not done) I feel like if I do not get the respect from the physicians and staff in regards to my rsd I have every right to complain to my representative, etc.

It may or may not help. But at least I feel I have a right to complain if I'm ever treated disrespectfully.

Good luck!
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Old 06-20-2012, 09:03 AM #5
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under the rsdsa.org site their is a document you can print out for emergency room care. There is also one for Inpatient Hospital stays.
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Old 06-20-2012, 09:34 AM #6
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My wife is at the end of her rope pertaining to doctors who ignore her diagnoses of nearly a decade. To this day doctors want to retest over and over again whether she has RSD or not. They do not bother with her records, they do not care of the fact she is on SSDI and medicare. They do appear to think RSD is a fraud. Could these retests be another way to pad their pockets? Very bad spot to be in and it seems to never end. Although this is putting a severe strain on my wife, she seems to be coming to the conclusion doctors are her enemy and must be avoided. She seems to feel pain is something she will deal with in her way, which is her choice 100%. Not to sound self centered but it has put a huge strain on me. I have become very bitter with our delivery of healthcare in this great nation. Did I mention most doctors will not except medicare? Also it seems paying out of pocket is getting more difficult because the fear the doctors have prescribing strong meds to a patient who is on medicare, yet they do not except it because it may send up a red flag to a federal agency? Bad spot to be in.

Sorry about the rant. There is always hope and certainly things can change for the better.
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Old 06-20-2012, 10:44 AM #7
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@ alt1268, thank you so much. I have not really researched the laws in CO for RSD/CRPS, but I will definitely check and see if there are any. Yes, I have seen the info on rsdsa.org thank you for pointing to that as well. It is good info and i haven’t taken that document to them, but i guess i should try. It’s funny how they won’t even look at the documents from the three docs that have identified my condition as CRPS II. It’s ridiculous.

The funny thing is that if anything I am guilty of not taking enough pain meds when I have breakthrough pain, and the pain ends up getting ahead of me. I have a love/HATE relationship with meds. And other times, when I took ALL the meds I have to resolve the pain (and that’s a lot), there was no getting past it without some big gun pain killer.

It is hard enough to deal with the fact that I am losing my ability to walk, and the shear volume of pain, that I am forced to plead my case EVERY SINGLE TIME, to every single medical “professional”, to gain some relief.
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Old 09-09-2012, 02:19 PM #8
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Quote:
Originally Posted by alt1268 View Post
did you guys check the colorado laws on rsd? here in Delaware there is a law stating health care workers are to be educated on our disease. (even though It is not done) I feel like if I do not get the respect from the physicians and staff in regards to my rsd I have every right to complain to my representative, etc.

It may or may not help. But at least I feel I have a right to complain if I'm ever treated disrespectfully.

Good luck!
has anyone ever contacted the AMA?
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Old 09-10-2012, 03:07 AM #9
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has anyone ever contacted the AMA?
no, i haven't.
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