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.

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.

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!

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.

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.

I can't urge everyone enough to stand up and fight for your rights. I am so angry with the fact that I have this monster. Then you get people who look at you like you are a fake. I wrote to my legistation, senators, etc. back over the winter. Recieved one email back. Will write again. I recommend you guys should do the same. If we don't speak up they will never know their is a problem.

Jimiking,

You and your wife have been dealing with this along time. God bless your patience. have you spoken to medicare about this issue? Give my best to your wife. Anita

@ 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.

@ JimKing, Thank you for your response. It was good to hear from your prospective. You sound much like my husband, and no... your not being self-centered at all. The rant is justified.

I too am nearing my 10 year battle trying to slay this dragon. and you’re right, our healthcare system, or lack thereof, is terribly flawed to say the least. Western medicine has little to offer me, in my opinion. I completely understand the position your wife has taken. I question EVERYTHING, and that seems to boggle their minds. You do begin to feel as though they are the enemy because they know so little about what is happening to us, and seem to have so little compassion. It starts to feel as though everything is a fight. Fighting to deal with the pain and disabilities that come with RSD, fighting to educate the “educated” as to why a ton of surgeries and procedures are not a good idea, and fighting to get the pain management that IS important/necessary... and that just because we have a prescription street drug problem in this country, shouldn’t hinder those of us who require these meds to find relief. And don’t even get me started on Ins, or Medicaid, Medicare, SSI, SSDI, etc.... It’s all a freak’n mess. We even have to fight just to see a doctor that we will have to convince and educate on our condition.

I do all kinds of research on this disease. It’s the only way to find out what the top nuero docs are doing to try and understand how to fix us. Most of the time I feel as though I am some kind of threat to most of these docs i am forced to see, because I know too much. I don’t just nod and smile and say OKAY to everything they what to try, and with good reason. At this point, I am the best physician I have, and i know my body better than anyone.

There are a couple of docs that I have found, specifically one out in CA that seem to get it. On the cutting edge of research & treatments. I wish I could afford their expertise. The relief that they might be able to offer is out of my reach as it is only for the rich.

I completely agree with you alt1268, and you are right... i need to get more active in speaking up/out. it's just wrong, wrong on so many levels. I will do more research and figure out who I need to write.

I watched a docu on pain the other day, and there is no reason that anyone should be in pain, as the meds are cheap and available. It's insane that we have to fight for the relief they offer. constantly having to prove our case. After a 4 hour ER wait, I couldn't believe that nurse was waiving the med in front of me "don't you want your medicine?" AHH. There is a special place in hell for her. It is times like those that I wish they could see what I feel, or be able to step into my body for just one minute... just one.