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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 02-13-2009, 03:59 PM   #16
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Re: Where to find a rsd doctor

Yes this is for pain management. I have nothing right now for the horrid burning. I got to talk to the pain clinic people today. Man are they nice. My doc didn't fax any medical records so I sent them the ones I had at home. I couldn't believe that a doctor at this pain clinic has already read them and put a call into my neuro doc. He said no injections right now, but the day of surgery he has suggestions for the surgeon for the type of anastesgia. The neuro called me to tell me he will send me a letter on their conversation and that the pain clinic will be calling to set up an appointment. I am actually getting some where. Kinda feels like a weight has been lifted. It will be nice not to be worring about who's going to deal with this monster with me. Will post when I get any news. Thanks so much for your support and help. Big gentle hugs Marcia!!!

 
Old 02-14-2009, 09:35 AM   #17
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Re: Where to find a rsd doctor

that really sounds great wall,really. it IS up to the anesthesiologist here who plays a big part in all this since that is the person who will be doing any blocks you have. any help the PM can be to your surgeon as far as guidance will help tons. unfortuently you really wont see your anesthsiologist til the day of your surgery but you DO have the time to chat with them then, and he will have been spoken to by your surgeon too. so far,your new PM sounds great to me. hopefully this will be the case. believe me,i DO know what the weight being lifted feels like when someone "'gets it"? good luck and please keep us posted. marcia
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Old 02-17-2009, 05:27 PM   #18
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Re: Where to find a rsd doctor

I am sooooooooooooooo!!!!!!! happy right now, I got an appointment with the PM doctor for March 3rd. I can't believe it. Every place else wouldn't even give my case a look. These people really care. They called me to set an appointment. I am so excited to be finally gettting someone who knows about this disease and can treat it. It is wonderful getting good news. Just had to share.
Debra

 
Old 02-18-2009, 07:57 AM   #19
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Re: Where to find a rsd doctor

i am sooooo happy for you too debra,really. i KNOW what it feels like to know you finally are being sent somewhere where people understand our pain. hopefully they can help with a few different modalities that tend to work well for us. PLEASE keep me posted hon. good luck at the appt. Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-03-2009, 02:06 PM   #20
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Re: Where to find a rsd doctor

I met the PM doctor yesterday, Monday. He gave me so very good information for the day of surgery. I called the surgery center and talked to them. Wow they are very kind and helpful. THe nurse told me that I will get to have an indepth conversation with both my surgeon and the anstheagolist( I didn;t spell that right) before my surgery. I fell so much better.
Now the possible bad news is I went for my pre-op and may not get to have the surgery on next Monday if my creatine is up. It has been up and down for the last couple of years, depending on what medication I am on. Most pain meds make it go up so I guess I don't understand why he would make me cancel the surgery? Oh well not much I can do but wait for the results. Will post when I get them.

 
Old 03-04-2009, 04:05 PM   #21
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Re: Where to find a rsd doctor

Sorry I am going to vent. I can't believe doctors these days. Do our lives mean nothing to them. When you can't get an answer if he is going to approve a surgery or not. I got my test results and the creatinine is a little higher but it is caused from the oxycotin. Potassuim is good. So I don't get why he won't give me an answer. He posted in my chart that I needed to up my citrate but did tell me how much. What am I a mind reader????Then I got a call from the surgery center and now they are changing my time from 9:00 to 12:30 this sucks bad. I hate living in limbo. I am not good at waiting wish I was and my blood pressure is up. Maybe a good stiff drink would help? Not having a very good day. You know the only thing that has made me even smile is when the hubby said he'd finish the laundry and do dishes tonight. What a guy.

 
Old 03-05-2009, 08:41 AM   #22
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Re: Where to find a rsd doctor

sorry for the crap you are dealing with right now walleye. its ALWAYS something. i really really am wondering just how in the heck your doc came up with the high creatinine due to the use of the oxy??? thats a new one on me since i DO have kidney disease and liver too and have been on oxy based meds for at least six years now and my labs(amazingly perfect), even with heavy damage to my kidneys has not affected my creatinine at all what so ever.

honestly,considering the creatinine issue alone,combined with the high BPs, i REALLY cannot stress enough just how much you really NEED to have some further testing done on your kidneys right now, really wall. i AM concerned for them from what you have stated. oxy SHOULD NOT be reaising something like your creatinine(its just not normal given what actually raises someones creatinine levels). was there ANY other labs like your GFR that were not within the normal ranges? did they ever just do a simple UA on you to check for ANY traces of protien in your urine at all? showing protien in your urine is actually one of the very first early signs of a possible underlying kidney disease.

i am just kind of concerned about this for you given what i know about my own kidney disease wall. i would really push for further testing with your primary doc, at least getting that UA done. if it does show protien traces, you DO more than likely have 'something' that is going on with your kidneys right now,really. having high BPs AND espescially the raise in your creatinine are two big red flag type symptoms for kidney disease. i am not trying to scare you here, just telling you what i know about kidney disease and wanting you to get this further evaled right now. its not normal with any oxy products to have what you have going on with your actual creatinine level(your doc is wrong),trust me on that one. like i said above,i have been on oxy based products WITH an actual kidney disease for over many years and my labs, espescially my creatinine have not changed in any way shape or form despite very real heavy cystic damage in both of them. this just does not sound right to me at all walleye. just see your primary with the symptoms. i am certain he would want to check for protien in your UA with what you have shown already. i DO wish you luck with this hon,but DO get those kidneys further evaluated right now. just why are you currently on citrate and what exactly is this? PLEASE keep me posted. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-06-2009, 05:00 PM   #23
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Re: Where to find a rsd doctor

Marcia,
I have 3 ducts in both kidneys that are plugged. I have had this for years. Caused by allergic reactions to penecillin. My blood creatinine usually runs around 1.3 to 1.4. It being 1.55 is a liitle concern. I was on vacation and didn't take my poly citra k (It is a potassuim supplement with other esstenitals to regulate the acid in the kidney)every like I should have. I have done the 24 hour urine collections with blood draws in the past. I will be doing one after surgery on Monday. I had make a speed run to see my internal med doc yesterday cuz he canceled my surgery. After going thru what I had been on before the oxy, it was altram, darvaset, darvon, these all messed up my creatinine levels a little more. He was able to see a pattern of when I was one these drugs by my creatinine levels. So hench the oxy. I am having the surgery, he talked to the anastigoloist and as long as they give me blocks and no general anstesia I will be ok. I have made an appointment with a kidney specialist for April 17. This doc doesn't want to deal with my kidneys any more. Thats ok I need the experts anyway. I can not have nsaids either. Narcotics only is what I was told. My goal is to get healed get off the narcotics and pray the rsd will back off once the constant is gone. It is nice to hope.

 
Old 03-11-2009, 11:54 AM   #24
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Re: Where to find a rsd doctor

Well surgery went well. Was given a block the leg was numb from the hip down to the toes. I didn't understand the total scope of the procedure I do now. They cut the heel repositioned it and then put in 2 screws. The block lasted 13 hours so at 1:00 am it wore off and let me tell you the pain was so unbelievable bad. I had told the nurses at the surgery center that I had been taking oxycontin for the past couple of months and it wasn't working to good anymore. They up the oxycodone 5mg to 1 or 2 tablets every 3 to 4 hours. That didn't worker either. I spent the whole night sobbing from the pain. finally at 7:30 I couldn't take it any more plus now I have the daughter cring too we got in the car and headed to the emergency room for pain management. What the hell doctor's and nurse's don't listen. It's not like I was seeking out drugs for the fun of it. They gave me 5 injections of dauladon. It took almost 2 hrs to get the pain level where I could stand it. The ER doc was extremely nice and could'nt understand why they didn't just give me a higher dose of the oxycontin to take home. He put me on 3 10mg 2 times a day for 5 days then 20 mg for 3 days and then down to 1 or none later on. So far no problems with my RSD. No burning but still in pain will be for a couple more days. Gota go nap again will post later on my progress.

 
Old 10-30-2009, 12:01 PM   #25
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Re: Where to find a rsd doctor

Quote:
Originally Posted by RoseinSanDiego View Post
Hi,
I very much agree with Karen -- Is your surgery absolutelly necessary? It's so dangerous for us RSDers.
Can't help you with the doctor request, I'm in San Diego. I have an RSd specialist here, there's 1 at UCLA and 1 at Loma Linda. Maybe you could try University of Minnesota? They would probably have one that is familiar with RSD.
I wish you the best of luck and hope you find a good doctor, and I wish you the best of luck with your RSD -- You'll find lots of support here on this site.
Deb

 
Old 10-30-2009, 12:05 PM   #26
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Re: Where to find a rsd doctor

My wife has been diagnosed with RSD. We live in San Diego. could you give us the name of the RSD specialist in San diego?

Thanks

George

 
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