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-   -   Where to find a rsd doctor (http://www.healthboards.com/boards/reflex-sympathetic-dystrophy-rsd-crps/669103-where-find-rsd-doctor.html)

walleye77 02-06-2009 06:53 PM

Where to find a rsd doctor
 
I am having a horrible time gettting a doctor to treat my RSD. My latest doc is a very smart neurologist but I don;t think he has treated many with this monster. I emailed 2 weeks ago asking for any help on what preventative measures I could take before my March 9th surgery. He emailed me today saying I could take 500 mg of vitamin C for the fractures. I didn't ask for help on the fractures I ask about the rsd. I was looking for, would it be a good idea to have a nerve block before surgery or would topomax be a good drug for the burning? It is so darn upsetting not to be able to get answers or help. I live in Minnesota so if anyone out there can point me in the direction of a doc I would be so thankful.

Gaollan 02-06-2009 07:28 PM

Re: Where to find a rsd doctor
 
I really can't help you on the doc front much. The only thing I can suggest is to call pain management docs near you and ask if they treat patients with rsd and if so how many, a lot or a little.

As for surgery with rsd, you need blocks before and after, make sure during surgery you get enough anesthesia and extra pain meds after to keep the nervous system as "numb" as possible. Is your surgery a very necessary thing? I ask only because we should only have surgery if it's life and death or there is no other option to take care of something.

As for the burning.....meds don't work for everyone to help it. Topomax is one med, others are lyrica, cymbalta, neurontin. As with everything, finding what works for you is trial and error.

Hugs,

Karen

RoseinSanDiego 02-06-2009 09:37 PM

Re: Where to find a rsd doctor
 
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

walleye77 02-07-2009 04:15 PM

Re: Where to find a rsd doctor
 
The surgery is necessary. I have stress fractures from the way I walk and they way my bone structure is on my left foot, the only way to get them to go away is to shave off part of the heel bone as it is forcing me to walk and apply weight on the cuboid, & 5 metarsal. My fracture has been since last May and no matter how much I stayed off it it wouldn't heal. We have tried orthotics, crutches, wheel chairs and just plain keeping off it. I would give anything not to have surgery but I can't take the pain from the fractures. I am petrified of the surgery or should say the out come with the rsd. I remember the horrid burning from my first foot surgery and don't want that to happen again. I will have to see if I can find a pain management clinic, the last time I tried to get into one it was 6 weeks out and I don't have that much time. I can only hope there's an opening.

Sandy325 02-08-2009 08:39 AM

Re: Where to find a rsd doctor
 
In regards to finding a doctor in your area - have you tried the RSDSA? Their website allows you to search for doctors and/or medical centers that treat RSD.

Good Luck

walleye77 02-08-2009 12:54 PM

Re: Where to find a rsd doctor
 
thanks I will try that site.

feelbad 02-09-2009 08:19 AM

Re: Where to find a rsd doctor
 
hey walleye,just where exactly are you located in MN(just a rough idea,N,S east or west of the metro?). if i remeber right,when we chatted before,i did ask you this but i forgot,duh? if i remeber right,you are up north of the metro? i see a wonderful PM in the midway area of st paul. i don;t know about too much in the more outlying areas,but there are some good PM options in st paul i am aware of. if you are closer to minneapolis,i do know thay have somtheng there too. would it be possible to travel down for this? the PM i see does have various offices scattered around the outskirts of the metro too. look up MAPS pain clinics,and that should get you to the info.

are you seeing a local surgeon? i also have an amazing ortho too if you need one,he does know alot about RSD too(he did both knee surgeries i needed on my RSD knee with no problems post op). he is thru summit ortho. i have actually seen ads on this HB site at different times for summit that just pop up in between peoples posts. i think the ads pop up accordig to where you live? i don;t know if anyone other than people from MN actually see these or not, but when you see one, you can also follow that link too. GREAT ortho practice with about 20 some wonderful best of the best types of surgeons working for them with offices too,scattered around the metro area. just a thought.

one BIG key to try and limit the possible spread of RSD when working on an affected limb is doing a full symp block pre op. my surgeon did this on me before both surgeries since both legs share the same level of sympathetic chain,it can create bilateral spread if not properly adressed pre op. everything with both surgeries did not change a thing with my RSD at all. it stayed right where it was pre op,that was a huge relief. and this WAS the knee that was directly affected with RSD.

if you need any other info walleye,just hollar,K? Marcia

walleye77 02-09-2009 04:30 PM

Re: Where to find a rsd doctor
 
Thanks feelbad,
Very good info. I live northeast of the twin cities. I know where the midway area is. I aslo found a MAPS in Blaine. Have you had good success with these? Heck it has to be better than what I've got right now which is nothing.
I am seen by Twin Cities Ortho's. They seem to know their stuff. Hubby had is ankle fused by them with no problem at all. When you say full sympathic nerve block are you talking the one in the spine? Or the one they give to knock out the nerves in the area the will be working on?
I am so glad to hear that someone has had surgery with a great out come. Its been the one thing I am extremly stressed about. I thought it was bad enough having rsd but now another surgery man enough to put you over the edge. Maybe it wouldn't be so bad if I know more about the disease but am still learning. Thanks.
Debra

feelbad 02-10-2009 07:34 AM

Re: Where to find a rsd doctor
 
honestly wall, the MAPS pain clinics really are one of the best in the area,with as you can see,many different offices around the metro. i see Dr espland,he has got to be one of the most caring and compassionate docs around. too bad you only see him for procedures,and for your very first initial consult/eval. but the other docs i have heard about are all really great too. they really do understand pain and what it can do and the best ways to try and manage it using alot of different modalities,not just the use of narcotics alone. i started there back in 04,shortly after my spinal cord surgey left me with not oly RSD but another hidious pain syndrome called central pain syndrome? nasty nasty crap there.

i am glad you have a good ortho,but if you need a better one,honestly you really can't go wrong by hooking up with someone from summit ortho. i LOVE my ortho, he has done three surgeries on me with two on that RSD knee and more recenetly,last year,my rotator cuff repair.

the actual symp block is done on your back(for the lower torso) with them hitting that sympathetic chain. they also did a femoral block on me that they do right at the groin area using some type of machine to do it with? never ever had any block done that way. but it completly blocks any pain signals from hitting the pain receptors in the brain for like hours and hours post op(had a full scalene block like this with my rotator cuff too,actually was "awake" during that surgery). if you really do feel your surgeon has the overall knowledge of RSD and the ways to orevebt a possible spread then stay with him or her,but if you dont,i would really look into another ortho who does or look into summit. they DO have that overall knowledge. good luck hon,Marcia

walleye77 02-10-2009 04:56 PM

Re: Where to find a rsd doctor
 
Wow, that's soooo great that you have doc's that care and are taking good care of you. I found out today that my neuro isn't in again until Thursday. Will while I was fuming that he is not doing me any good I started checking out MAPS, I guess they are part of Healtheast and I'm not covered there. I contacted a clinic over in St. Croix Falls, Wisconsin and my god they have a pain clinic every monday. Their main office is in Eau Clair but they just schedule and take the referrals. it is called Pain Clinic Of Northwestern Wisconsin and they have at least six doctor's. Talk about happy I couldn't find one in Fairview Wyoming. I faxed my neuro doc a letter today pretty much spelling out how unacceptable it was to not be informed that he was not available, not a soul contacted me even after I had called twice. I asked him for a referral and letter spelling out what we have done, which isn't much of anything, lidoderm patches. yep those are great but not for the burning. I also told him that he was putting me at risk for not getting the proper treatment before my surgery. Requested this letter be faxed to the number I provided and that I was following up on Friday so I can get an appoinment.

feelbad 02-11-2009 07:05 AM

Re: Where to find a rsd doctor
 
THATS it,wyoming. i remember now you mentioning something about fairview up there. ya know,if you are somehow hooked into thwe fairview system,that would also,since the U of MN IS a fairview entitiy,hook you in there too. i know a couple of people who have had great pain care from fairview in st paul/mnpls. i think it is fairview riverside? they have the rest of the Us stuff located out by the metrodome. we had to take our son there for treatment at their riverside clinic for bi polar(totally different clinic in a different area than the PM clinic is). they have many different parts of the the Us different programs just set up around a very big U of MN campus there. but i KNOW without a doubt that fairview has their very own pain clinic located aroud that area. all you woud have to do is simply call. just a thought for you that sounds like it IS within your network? the full title of the U of MN is now,and had been for quite a few years is,fairview university medical center. not "just" the U of MN anymore. i simply LOVE this particular hosp. they first saved our youngest son from liver failure and got him the liver transplant he so desperately need then when i was found to actually have a glob of blood vessles that ahd been growing inside of my spinl cord,we went back uo to the U and i was lucky enough to be seen by an amazing man who was at the time the head of the neurosurgery dept,dr maxwell. HE saved me from becomeing totally dependant upon a whellchair by just his level of expertise of what i actually had there inside my cord. two other really "knowledgable" NSs completlety had two totally differeing opinions as to what this sucker was and most importantly what it ment for me leaving it in vs takig it out. i was dang lucky to just even have that level of over thrity years of experience and the most with having this crap inside your cord he retired back in 06,very shortly after Dxing me with yet another life or death crappy thing,an anuerysm inside my brain that was soo deep it wa considered inoperable. got it doen by a great interventional radiologist thru st paul radiology. what a lifesaver.

i don;t know anything aboutthe people who you mentioned aboput seeing,but i DO kiow that fairview has a really good PM program. dspite the fat tha the MAPs are run thru healthaeast sysmt,s,that dos nt automaticlally trule you out as possibly goingthere since this IS a very definite speacialty. the U of MN was not in our system either,but that did not mean we could not get a pre uthrotiazation to be seen there when eeded. its kind of all what your ins co decides is actually needed here,ya know what i mean. just take a good hard look at ALL of your options walleye and see where you are with this. you would be amazed at just what some ins co will actually allow and pay for under certain circumstances. until everyone tells you no,it is never a definite no,ya know? good lyck wall, please keep us posted, marcia

walleye77 02-11-2009 04:31 PM

Re: Where to find a rsd doctor
 
Feelbad,
I did call the Riverside pain clinic. They are out 4 to 6 weeks and I can't wait that long. They would have been my first choice as I had a referral to them months ago and they were out that far then. They would have taken me if I had been a cancer patient, they figure RSD wasn't good enough to get in any earlier and our pain isn't as great as cancer pain.Nice huh!!!!!!! They kinda of turned me off since the can discriminate with diseases. I am hoping that things go well so I can get some help soon. Will keep posting what I find out.

feelbad 02-12-2009 07:58 AM

Re: Where to find a rsd doctor
 
that really is sick. the best possible advice i can gibve you right now wall,considering your situation would be to plead your cae to your primary and see just what he or she can get done for you,this IS simply part of their ongoing job to do for you,manage your ongoing care. if you cannot get into the programs within your own network,your primary(as in mine and my sons care) CAN get a level of preauthorization for you to be seen at the MAPS clinics. they DO have the power here to do or not do for us,it all depends upon just what they are willing to do for us,ya know?

just have a heart to heart with your primary to find out what possible options he can provide for you. if you go in there with all the MAPS info,and show him this stuff and that you would more than likely be able to get into their program much much quicker,well what have you got to lose there ya know? they simply CAN do out of network referrals when absolutely needed. that much i do know. this IS a true dire need for you not something you want to do for fun ya know? try that angle and see where it leads you. its always worth that shot. you wont know what your true options are til you try. that much i found out, and just in the nick of time with our son. it never hurts to just ask. i do wish you luck with this hon. please keep me posted,marcia

walleye77 02-12-2009 05:14 PM

Re: Where to find a rsd doctor
 
Well I got a call from my neuro and talked with him. He is dictating orders to go to the pain clinic in St croix wisconsin. I explained what I have learned from others with rsd who have had surgeries and why the need to have the nervous system kept quiet was necessary. I really don;t think that he is real knowlegable with rsd and all the precautions one needs to take. Will have to wait and see what happens. The ball is in his court. He really wanted me to stay within fairview but I explained they are out to far to be of any help and the other was out of network. At least he is doing something. Will post when I hear.

feelbad 02-13-2009 07:54 AM

Re: Where to find a rsd doctor
 
well at least something is being done for you,thats a big plus. just wait and see what this,PM has to say and go from there. since this doc has already gone out of network for you,there has been kind of a 'pressident' set here? you know what i mean? if they can do it once,they sure as heck can do it again if this doc appears clueless. as long as you have some options and choices,there is hope there wall. please keep us posted,and good luck with this doc. just so i am completley on the same page here as you,this IS just for pain management right? Marcia


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