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!

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.

rsd and legislation
 

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.

Nothing medicare can do about it. My wife's doctor of 5 years dumped her even though I was paying for the visits out of pocket because the doc does not want medicare to question her about charges made to medicare such as $75 urine tests that turned out to be $600 instead. Or ketamine shots that do absolutely nothing and has gotten this doctor in a mess. She just does not want to draw attention I suppose. Thanks for the blesses! :)

Yes it does seem like a battle every single time. So much so I found myself crindging every time the doc suggested something that the wife did not like. In which I supported her 100%, it was the response from the doctors that scared me such as "nothing I can do for you." We've gotten into arguments in how she should approach and speak to doctors in order to receive some support. Although we went through hell with losing coverage, close to bankruptcy and then her getting medicare and a hefty settlement from SSDI, she now finds herself with no doctor. The high stress never ends it seems and stress is a big no no pertaining to RSD.

Vrae, who are these cutting edge doctors in California?

I am away from home th afternoon. But get send u a copy of what I sent tomorrow. I will also send u contact info. On your state policies. I just figure if we don't spEak up for ourselves no one else will.

If I could see anyone about this condition it would be University of California, Los Angeles ... Dr Joshua Prager, MD, MS, California Pain Medicine Centers at UCLA: Center for the Rehabilitation of Pain Syndromes (CRPS)
Reflex Sympathetic Dystrophy Institute would be my first choice.

Prager is leading in research world-wide, but is not bound by study restraints and is customizing treatments for individuals. He has learned from the studies/trials that Dr. Robert Schwartzman, Anthony F. Kirkpatrick, MD, PhD, and H. Hooshmand, M.D. have done and has started to customize ketimine treatments and is having good results. here's a video http://www.youtube.com/watch?v=7Qa6gMRWM8c

Dr Joshua Prager is a contributor to the site that alt had mentioned (rsds.org). here's something you could take a look at. about half way into the pdf he get's into ketamine http://rsds.org/2/library/CRPS%20%20...DSA_Prager.pdf

Here is his website http://www.californiapainmedicinecenter.com/profile and the info on treatments http://www.californiapainmedicinecenter.com/general

I know you said that ketamine wasn't helping your wife, but perhaps the doc just simply didn't know what he's doing... maybe? I can't get over the "nothing I can do for you" statement from her doc. And part of me wants to say to him... cool, now send me to someone who can do something.

I completely understand the financial hardships that come with this. I am in BK after 10 years of being self employed. I lost my health ins last year, and am now part of the "system". I was told by SSA that I don't have enough work credits to get disability because I was self employed and I had business losses from the startup phase and was no longer eligable. had I filed a few years earlier, I'd been good, but nope, I waited too long (denial). It's a little unreal to me. I have worked since I was big enough to ride a bike and throw a paper. 30 years of paying in and I don't have enough credits... what?! I was self-employed, put others to work too, and I have been punished for all the damn money I put into my company to try and make it successful. Anyway, yes, i so relate to what you are saying about the stress of life, and the stress of the condition, and that all of which just cause more physical pain.

I guess i've gotten a little long winded on these responses. I'm just damn frustrated with the lack of care and understanding from the medical community. And it's no easy thing to feel like you've lost ... nearly everything. But I will say this, praise God that I have my husband who is loving and compassionate. I feel sure your wife feels the same way. It is a blessing to have someone walk this walk with you. I pray your wife finds someone who can truly help her. Who truly cares, and is educated in the best approach.

has anyone ever contacted the AMA?

no, i haven't.

Newly Diagnosed RSD
 

I was just recently diagnosed with RSD and have a heck of a time finding a doctor that will take me on, as well as my insurance. We waited FOUR WEEKS for a doctor to send over our records and have the new one review them and then he says he cant take on my case because I have RSD. So now we're looking for an RSD specialist, can anybody recommend one? We're in Colorado. Also, does anyone have any tips or tricks to helping ease the pain? I have pain medicine when it gets bad, and we've tried heating pads and ice and elevation, but they dont seem to help much. Especially the heating pad, seems when I use it that my muscles start to go crazy and spasm. Anyone have any better methods?

I was in treatment with Dr. Prager but he is no longer on my employer's MPN so I cannot continue with him, which is unfortunate because we were mid-treatment. It's frustrating now because I have now gone to EVERY dr on my employer's MPN and NONE of them have EVER treated a patient with CRPS, but my primary treating doc is very creative and keeps trying to help me find the best one now that we can't use Prager and is a HUGE advocate. She has written Dr. Prager on my behalf and gotten him to write letters to my new pain dr and collaborate without pay on a care plan for me. Unfortunately even he thinks I'm at the point where I would benefit from a SCS, which I'm pretty leery of, and the person who would be putting it in has NEVER done one for CRPS, or treated a CRPS patient, but he has been collaborating without charge with the new dr to educate him just a bit (that part has been his amazing nurse practitioner, Erica.)

Any hospital, anywhere, (I worked in one when I was injured) the staff is NOT educated on CRPS, so you HAVE to advocate for yourself constantly. I had an unrelated to CRPS hospital stay in November of last year and I had to have a sign hung not to do blood draws, ivs, or blood pressures on my affected limbs, and every regular doctors appt for my regular health stuff not related to CRPS I have to explain my condition and advocate for not touching etc. Finding medical staff who know about and understand CRPS is difficult. My primary worker's comp dr who treats me for the CRPS has had to have inservices and teach her staff to place me in warmer rooms, or let me wait in my car (her office is REALLY cold), to never touch me, etc.

Good luck in your search for someone to treat you that is logistically possible, because where I live, even though I'm a few hours from Los Angeles where there are a lot more treatment options, I still am barred from that for financial reasons.

So sorry to hear about all the hassle. and boy is this Dx a HASSLE! :mad:

You might try PM Dr.Vitaliy Y.Domashevich, MD, Aurora, CO (I think he offices in Englewood too). He treated me for a while, and I will be reaching back out to him next month when my new insurance kicks in. He did a decent job of keeping pain under control and did a fantastic job as my anesthesiologist on a knee surgery I had to have after being Dx with CRPS II. I do not have a good referral for a Nuero doc yet. I am waiting for a friend of mine who is a PA to suggest one. Keep me posted if you find one. Best of luck!

It’s ridiculous, that’s for sure!

educate yourself
make yourself be heard clearly
in a inner polite manner demand
respect and not an *** who treats
people as numbers rather than by your name
stand your ground and please always have a
advocate with you if possible
standing with you

someone who cares

AND THAT'S THE TRUTH
STAND UP MOVE FORWARD
I WALK WITH YOU IN SPIRIT

that someone who cares

Colorado
 

I have had RSDS, affecting both arms and both legs, for 19 years as of this past week. In the beginning I found much resistance; doctors suggesting it was all in my head. After 10 years my condition started to slowly improve on its own, until a car accident inflamed it beyond anything it had ever been before. Funny enough, I have found much help through a small people's clinic! Never have any emergency personnel questioned my condition, but rather offered sympathy. Nobody has ever suggested to me that there are special Colorado laws regarding RSDS... if anyone has any education or insight on this I would be grateful! I would suggest, that if you're running into prejudices concerning your condition, carry an audio recorder or use your smartphone, etc. to record such conversations. I'm sure the hospital's lawyers would be keenly interested in hearing it :-)