Is Traditional Medicine Medically Inept Or Epically Shameful And Despicable When It C
 

Is Traditional Medicine Medically Inept Or Epically Shameful And Despicable When It Comes To Treating/Curing RSDS

Financial considerations are in play. It is not very profitable to research and develop medications for CRPS which is a somewhat rare condition. So the drug companies don't want to play, and we're left over using whatever we can find for other conditions prescribed off-label...........

Trick question?

I'd put my money on epically shameful...based soley on my own personal experience. There are good docs out there and people who are doing good work...but I've run into far too many doctors who seem like they could care less about RSD and won't even be bothered to be correctly educated about it when confronted with a case.

I have heard things like "RSD doesn't spread" and "RSD only occurs in a hand or foot not anywhere else" and I wonder where these doctors get this stuff? Even my fairly basic attempts at research on the internet pull up nothing that says stuff like this. It's not like I see different sources with contradicting opinions on these things...across the board it seems accepted that RSD DOES spread and you can have it anywhere/everywhere. So where are they getting their information? Seems to me like they have only a very very basic knowledge of the fact that RSD EXISTS but are just pulling the other stuff out of their rear ends. And who, as a patient newly diagnosed with this monster is going to know any better?

Don't get me wrong...this is a very complicated disorder that is NOT very well understood...but what gets me are the docs and members of the medical community who aren't even willing to educate themselves about the condition period when confronted with a patient who has this condition. I don't mind so much if the doctor doesn't know all about at the get go...I would imagine there are just too many diseases and conditions out there for them to know everything about all of them. But for doctors to give patients bad information or to just pawn them off on someone else because they don't feel like doing their homework? Shameful...

Hi All,
Rsd seems to me to be a maze in and out of doctor's offices and no one knows what it is or if they do they send you elsewhere. It is quite frustrating at all the false things we all have been told. I was even told within the first month of being diagnosed (in Feb) that by the summer you will be better. I waited and waited...and I am still waiting. It is now six plus years and I still have it lol.

I had to laugh when Catra121 said "I would imagine there are just too many diseases and conditions out there for them to know everything about all of them." I went to an ER once and I had a very honest doctor tell me that when someone (like me) comes in and he and other doctors have no idea what it is...before seeing the patient for the first time he told me they go to the Internet and look up what we have and then come to see the patient. Great I thought but at least he was honest and then asked me what I needed him to do in order to get me some pain relief. He knew I was in bad pain and could read that I had been in the ER for the fourth time that month plus had all my test results in that hospital. I hate the egomaniacs that will say stupid things like mentioned above that rsd does not spread. I just look at them and laugh at them (I have been full body since four months after initial injury).

My goal is to write a book about living with rsd and have as many teaching hospitals as I can read it. There will be people not happy about what I write but oh well because I am writing the truth since not many doctors will tell us about it. I hope to have a laptop within the next month and will keep adding to what I already have outlined and started. Funny thing is for many years I love to write and have always wanted to write a book but could never figure out what about...until rsd showed up haha. I think it will benefit so many people living with chronic pain and if I can help one person then I will be very happy.

I personally think that if there was a cure for rsd or some treatment that could get it into remission quickly then the drug companies would never make as much money as they do now with rsd patients or any other patient needing long-term treatment. It is sad how doctors that take an oath to help people actually treat people terribly and let money get in the way of what is best for the patient. I am not saying ALL doctors but there are some out there that are good and really do care about their patients...I have only met about 3 or 4 thought unfortunately.
Best of luck to all,
kathy d

On the most part-both. If you are wealthy you'll find the best or at the very least doctors who are very interested in your well being. If you are another face in the crowd, standard insurance on the most part, you'll end up doing the shuffle, bouncing ball routine. Not good and must be addressed publicly in someway. I also believe this is not uncommon to other medical conditions.

Hi jimking
 

You are so right. this occurs with many other medical conditions. Instead of the doctors being up front, and admitting they don't know enough, or doing the research on it for a patient, they pass you on to other physicians. Their oath should be taken seriously for all patients. I found that teaching institutions for the most part are the best, as there is a sharing of knowledge within different diciplines. This lacks in everyday practice, and it is often up to the patient to inform each doctor of what has occured previously. I feel for those of you who do have RSD. I have NP in places, and I can understand the pain involved with that disorder. I hope each of you finds a doctor who has courage and the smarts to help treat it effectively. ginnie

Good thread, BTW.

The first time I read the title of this thread, I read it as "Ethically Shameful". Then upon reflection I thought it probably doesn't matter. Then upon further reflection, and thinking about what I wanted to say, I think it does matter.

Medicine knows a lot, and is learning more every day. But still, with all our technology, there is still more that medicine doesn't know than it does know. What you say is essentially true:
Many doctors, including specialists, have acknowledged this, and that their savvy patients often know more about their conditions than they (the doctors) do, because the patients are suffering with [whatever] and have the time and incentive to do the research.

Medical research is more often driven by economic$ than by altruism; there is more money to be made on treatments and drugs that are patentable than on cures and treatments that aren't patentable. What's been mentioned about the rarity of the condition is also valid. Theoretically (and rhetorically) the profits from these patentable wonders should drive further future research; unfortunately, in reality they often go toward ever-increasing dividends and bonuses.

Going back to the original question/quote, Doctors often aren't aware of [RSD/CRPS] because it is not (yet/sufficiently) taught in medical schools, and they are also taught to dismiss/reject anything that is not taught in medical schools (like information gleaned from the internet and anecdotal evidence from patients). Doctors often admonish us that we shouldn't believe everything we read on the web, and for the most part I have to agree with that, but that's not the same, and doesn't mean, we shouldn't believe anything we read on the web. The legitimacy of sources is everything.

A lot of people on this site are helping themselves and others by sharing the information they glean here and elsewhere, which was not possible as little as 15-20 years ago. That, IMO, is an amazing thing.

As to the ethical part I mentioned above, I think our doctors do truly want to help us, but they have their rules and standards, and they are taught that to be ethical, they must adhere to those rules & standards. We need to help our doctors help us, but getting them to accept/listen is going to require that our homework be done carefully, come from acceptable/legitimate sources, and done to their standards. (I've had doctors dismiss/reject articles/studies from Mayo, FCOL, so this is no easy task.) We have to learn to play by their rules if we want them in the game, and I think we do. ;)

Doc

My personal experience is their are some doctors who could really care less and do not want to be bothered. (i.e. my ortho) while I get many doctors say that they are very curious to certain aspects of RSD. (i.e. the spread)
Recently I had to add abilify to my list of meds and my pcp is following that in case something goes wrong, he is close by. We were talking about my toes and feet. While one foot is cold and tawny the other is red and hot. My toes are now tan and he said he never had heard about it spreading, but was not real knowledgeable about RSD. I was so glad to hear his admittance. He further asked if I had any information, he would love to read it. WOW! I thought, its not everyday you get this response from a doctor.
Ethically, I think my pcp gave me the best response, while my ortho ignored my complaints and tried to pacifiy me by saying well your xrays look ok. Medication ethics for me falls into the same ball park, you have those who don't want to see people suffer, while others dont care. I would hope when all the options are done with my PM he will refer me for outside help that he is not familiar with.
I am not giving up. Not yet.

I've had doctors like that (not RSD/CRPS); they are not on my team. I've found others; some are healthily skeptical (as am I) but are persuadable with sufficient credible evidence, and I'm ok with that. I've had to jump through some hoops and build communication channels & trust, but that runs both ways, and I'm very satisfied with my team as a whole.

Most of the information I posted previously came from one or more of my current team.

Sounds like your PCP is a keeper. Mine will read stuff, but I have to be vigilant about sources...

Doc

My current PCP is great and has literally been a life saver since I found her in April. My previous one was just awful and I guess I have just had such a string of bad luck that it has disheartened me quite a bit. I know there are good doctors out there...but it just seems that they are the exception rather than the rule and that's what I find shameful.

catra

I agree, usually after 1 visit you can see who is in it for the money and who is in to truly help.
You know darn well, if someone tells you they are in pain, hypersensitive, feel like they are having temp changes and have swelling, something isn't right, even if they don't know they should send you to someone who does. Not pretend that the patient has lost their mind.
Doctors are suppose to have a duty to their patient.

Is Traditional Medicine Medically Inept Or Epically Shameful When It Comes To Treatin
 

Thanks for taking your valuable time to respond to my original posting. Please take the time to read my latest posting all the way to the end because the saga only gets better or worse depending upon your point of perspective.

All the very best,

Grey Hair and Grey Matter

Is Traditional Medicine Medically Inept Or Epically Shameful When It Comes To Treating/Curing RSDS?

Are the members within the circle of traditional medicine ostriches with their heads in the sand, or are they purposely thwarting pragmatic and viable non-traditional Reflexive Sympathetic Dystrophy Syndrome (RSDS) treatments/a cure? Please read on and I'll let you decide whether this evocative dichotomy is spot-on, or whether it's an unfair diatribe against traditional medical procedures and anecdotally seemingly traditional medicine's insuperable aversion/posture against recognizing non-traditional RSDS treatments that also anecdotally at the very least seemingly work.

As a non-practicing Protestant, I'm obviously not overly religious except on holy holidays, but from a medical standpoint there may be--for the lack of a better term/scenario-- a "Lady of Fatima" story/moment brewing in Monroeville a suburb just east of Pittsburgh, PA. Why? At this juncture I don't know whether Dr. Constance Haber [a chiropractor and not a physician no less] is a medical "Wonder Woman"/pied piper/medical saint, or a charlatan or someone in between, but for the time being it would definitely appear as if she's definitely the former as follows: Please let me explain. For the past few years our favorite [only] granddaughter, has been suffering sporadically with severs. Severs essentially is caused by the feet growing too fast. She may have some genetic predisposition in this regard because I actually had a size 12 shoe size by the time that I was 11 or 12, and then my feet abruptly stopped growing. But I digress.

During June of this year, our granddaughter's right foot was injured but not seriously, and shortly thereafter in a rather bizarre incident during a very intense soccer matchup she was kicked in the heel by an opposing player, our granddaughter immediately plummeted, and she was carted-off the soccer field writhing in excruciating pain. Subsequently, primarily our daughter had been taking our granddaughter nonstop to see various physicians and physical therapists in San Diego literally day-in and day-out from morning, noon and night for the past four or five months straight all to little or no therapeutic avail. Our granddaughter's omnipresent pain in her right foot [An eight on a scale from one to ten] was so excruciating, e.g., that our daughter actually had our granddaughter admitted to Rady Children's Hospital in San Diego. I won't dwell on the nonsense [medical appointments, discussions, tests, etc.] that ensued except to say that the physicians in San Diego especially at Rady Children's Hospital in San Diego didn't/still don't have a clue about a proper diagnosis and especially a viable medical treatment/cure for our granddaughter's RSDS!

While our daughter to the best of my knowledge isn't "persona non-gratia" at Rady Children's Hospital she does have a well-deserved reputation for being very assertive bordering on aggressive as the mother ["Mama Bear"] of our granddaughter [patient] and it's actually reflected in our granddaughter's medical records. I mean our daughter getting right in the face of a noticeably indifferent/seemingly inept physician and telling him point blank that "You don't give a "s..t" [expletive deleted] about [the suffering and the welfare] of my daughter" doesn't exactly endear one to win friends and influence one's mother-in-law! [I must hasten to add, however, there are mitigating circumstances, however, because our daughter has a surfeit of Teutonic/Saxon blood in her and somewhat similar to me she doesn't suffer fools, incompetents and especially people who are unnecessarily indifferent very well irrespective of their rank or station in life!]

Personally, I don't know too much about Dr. Haber except what she and others have posted on the Internet. She's very experienced and supposedly within pain management circles apparently widely recognized and she utilizes a patented ultra-violet [photon] machine in her treatment of RSDS, [Quite frankly, I don't know whether it's a Rube Goldberg/"Wizard of Oz" gizmo/contraption or whatever] but voila after a number of ultra-violet [photon] treatment sessions our granddaughter for many weeks now is apparently completely pain-free from RSDS! Miraculous? Possibly. At first I, myself, was naturally mystified almost stupefied at the dramatic medical turnaround/results. As more of the saga unfolds, however, I'm less inclined to believe that it's a miracle, but predicated on verifiable scientific evidence/facts.

What are the predominant teachable moments? What you may find medically informative and possibly even startling is that when Dr. Haber did an initial thermograph image of our granddaughter's right foot and it was almost entirely blue! Really! [From what I can gather second-hand (I didn't personally witness the treatments, e.g., but our son-in-law did) seemingly insufficient blood was flowing through our granddaughter's foot prior to her ultra-violet (photon) treatments.] Conversely, after a number of non-invasive ultra-violet treatments on our granddaughter's right foot, from a thermograph standpoint her right foot at first became almost entirely red and/or orange and subsequently entirely bright red and her ultimately currently being [temporarily at least (a few weeks) ] free from pain in her right foot and her right leg. [Dr. Haber and our daughter/son-in-law have the photos/thermograph images in various stages of our granddaughter's treatment to corroborate the cure!]

In any event from all current medical indications, our granddaughter has been suffering from a very painful malady--Reflexive Sympathetic Dystrophy Syndrome [RSDS] which previously has occurred rather infrequently in children versus adults, but lately it's become much more prevalent especially with the advent of the ever-growing popularity of soccer and other youth contact sports in the U.S. Out of utter frustration bordering on justifiable anger at the seemingly indifference, ignorance and ineptitude of the physicians in San Diego particularly at Rady Children'[s Hospital, we as a family naturally started to seek elsewhere viable medical treatment alternatives for our granddaughter. While our search wasn't exhaustive, we found that treatment for RSDS is apparently predominantly centered in Palo Alto, CA [Stanford], Pittsburgh, PA, [Pittsburgh Institute] Baltimore, MD [Johns Hopkins--but only for patients over 18 and not for children or teenagers under 18] and Boston, MA [Massachusetts General] particularly as it relates to children.

Our daughter and our son-in-law, therefore, made an appointment after getting an appropriate referral to admit our granddaughter to the "Pittsburgh Institute" for approximately three (3) to four (4) weeks of intensive physical therapy for our granddaughter--potentially five (5) to (6) hours [up-front supposedly very painful therapeutic treatments] a day seven days a week! But prior to that via fortuitous happenstance on the advice of one of our son-in-law's business colleagues they decided almost on an unplanned/unforeseen whim to give Dr. Haber an opportunity to strut her purported stuff. [Ultra violet (photon) technology used in her treatment of RSDS]

Parenthetically, our granddaughter recently just turned twelve. (12) Personally I can't think of a better 12th birthday present than to be after so many months of enduring excruciating pain to be eventually completely pain free. Realistically, it's probably still somewhat premature to know whether this dramatic medical turnaround certainly will be sustainable/permanent. While it's seemingly almost too good to be true for the sake of discussion if our granddaughter's RSDS cure is permanent, e.g., I honestly/truthfully think we're potentially witnessing a valid medical breakthrough and potentially a worthwhile story to tell on a national level and possibly even an international level worthy of potential publication in various prominent medical journals. If Dr. Haber's treatments ultimately work, and they seemingly have worked, those who are suffering from chronic RSDS may want to seriously consider Dr. Haber for possible future RSDS treatment. In a nutshell, what Dr. Haber does/did seems so simple; yet, "simple" seemingly turns out to be quite sophisticated when it comes to successfully treating curing RSDS! Best of all, miraculously or not so miraculously depending upon one’s perspective, Dr. Haber's methods and the scientific evidence obviously actually work!

The medical saga only gets more convoluted and murky, however, when it comes to the roadblocks of those engaged in traditional medicine and RSDS. Why? A principal of The Pain Management Center at Rady Children's Hospital naturally wanted to schedule our granddaughter for continued treatments after our granddaughter's recent hiatus from traditional therapeutic treatment. When our daughter informed her that our granddaughter "had been cured" and how she "had been cured" the principal at The Pain Management Center at Rady Children’s Hospital had the audacity to say that she and her colleagues didn't want to know "s..t (expletive deleted) from Shinola" about the alternative procedures/medical treatment. ["We're not trained or equipped to engage in this type of treatment!"]

Our daughter very similar to her mother obviously is a "Mama Bear" and proverbially a real pistol, but considering what our granddaughter went through--seemingly unnecessarily went through excruciating pain months for months on end--I think that while you may not necessarily be sympathetic to our daughter’s following comments at least you should probably be empathetic to her comments from a lay person's standpoint/perspective.

Again, our daughter doesn't mince words especially when she thinks she's correct and her parting comments to the principals of Rady Children's Hospital in San Diego were as follows: "Shame on you for not being more medically open-minded, medically inquisitive and medically intellectually honest/transparent!" "Shame on you for allowing our daughter to continue to suffer from excruciating pain unnecessarily when it was seemingly medically apparent that your medical procedures weren't working and in retrospect probably never ever would have worked!" "Shame on you for taking our/our insurance company's funds and having us and others expend unnecessarily considerable additional funds out of our own pockets because you superciliously and sanctimoniously fail to recognize viable alternative RSDS treatments that work but aren't recognized by the traditional medical community." "Finally, shame on you for putting your proverbial heads in the sand and not proactively investigating viable RSDS medical alternatives and letting us know that they exist, and as a result your utter disregard to follow your Hippocratic oath!"* Okay, dear daughter, facetiously please inform us as to how you really feel!

Parenthetically, moreover, representatives of Rady Children's Hospital anecdotally also seem to engage in a pattern of taking proverbial potshots at parents who justifiably brace them as "Mama Bears" concerning medical treatments for their children. Our daughter, e.g., actually has a physician [who shall remain anonymous for the time being] whose child now needs a liver transplant and the principals at Rady Hospital gave this physician/parent all kinds of grief and even questioned her mental stability when she justifiably started to raise an appropriate fuss about the medical ineptitude of Rady Children's Hospital in San Diego!!! Fair and balanced? You decide... Please let me know your sentiments and especially if you've experienced similar reactions from those engaged in traditional medicine. Personally, I think we're potentially getting to the bottom of this malady and a panacea may be within reach.

Grey Hair & Grey Matter

*Modern Hippocratic oath

Modern version
A widely used modern version of the traditional oath was penned in 1964 by Dr. Louis Lasagna, former Principal of the Sackler School of Graduate Biomedical Sciences and Academic Dean of the School of Medicine at Tufts University:[8]
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.




Is Traditional Medicine Medically Inept Or Epically Shameful When It Comes To Treating/Curing RSDS?

Are the members within the circle of traditional medicine ostriches with their heads in the sand, or are they purposely thwarting pragmatic and viable non-traditional Reflexive Sympathetic Dystrophy Syndrome (RSDS) treatments/a cure? Please read on and I'll let you decide whether this evocative dichotomy is spot-on, or whether it's an unfair diatribe against traditional medical procedures and anecdotally seemingly traditional medicine's insuperable aversion/posture against recognizing non-traditional RSDS treatments that also anecdotally at the very least seemingly work.

As a non-practicing Protestant, I'm obviously not overly religious except on holy holidays, but from a medical standpoint there may be--for the lack of a better term/scenario-- a "Lady of Fatima" story/moment brewing in Monroeville a suburb just east of Pittsburgh, PA. Why? At this juncture I don't know whether Dr. Constance Haber [a chiropractor and not a physician no less] is a medical "Wonder Woman"/pied piper/medical saint, or a charlatan or someone in between, but for the time being it would definitely appear as if she's definitely the former as follows: Please let me explain. For the past few years our favorite [only] granddaughter, has been suffering sporadically with severs. Severs essentially is caused by the feet growing too fast. She may have some genetic predisposition in this regard because I actually had a size 12 shoe size by the time that I was 11 or 12, and then my feet abruptly stopped growing. But I digress.

During June of this year, our granddaughter's right foot was injured but not seriously, and shortly thereafter in a rather bizarre incident during a very intense soccer matchup she was kicked in the heel by an opposing player, our granddaughter immediately plummeted, and she was carted-off the soccer field writhing in excruciating pain. Subsequently, primarily our daughter had been taking our granddaughter nonstop to see various physicians and physical therapists in San Diego literally day-in and day-out from morning, noon and night for the past four or five months straight all to little or no therapeutic avail. Our granddaughter's omnipresent pain in her right foot [An eight on a scale from one to ten] was so excruciating, e.g., that our daughter actually had our granddaughter admitted to Rady Children's Hospital in San Diego. I won't dwell on the nonsense [medical appointments, discussions, tests, etc.] that ensued except to say that the physicians in San Diego especially at Rady Children's Hospital in San Diego didn't/still don't have a clue about a proper diagnosis and especially a viable medical treatment/cure for our granddaughter's RSDS!

While our daughter to the best of my knowledge isn't "persona non-gratia" at Rady Children's Hospital she does have a well-deserved reputation for being very assertive bordering on aggressive as the mother ["Mama Bear"] of our granddaughter [patient] and it's actually reflected in our granddaughter's medical records. I mean our daughter getting right in the face of a noticeably indifferent/seemingly inept physician and telling him point blank that "You don't give a "s..t" [expletive deleted] about [the suffering and the welfare] of my daughter" doesn't exactly endear one to win friends and influence one's mother-in-law! [I must hasten to add, however, there are mitigating circumstances, however, because our daughter has a surfeit of Teutonic/Saxon blood in her and somewhat similar to me she doesn't suffer fools, incompetents and especially people who are unnecessarily indifferent very well irrespective of their rank or station in life!]

Personally, I don't know too much about Dr. Haber except what she and others have posted on the Internet. She's very experienced and supposedly within pain management circles apparently widely recognized and she utilizes a patented ultra-violet [photon] machine in her treatment of RSDS, [Quite frankly, I don't know whether it's a Rube Goldberg/"Wizard of Oz" gizmo/contraption or whatever] but voila after a number of ultra-violet [photon] treatment sessions our granddaughter for many weeks now is apparently completely pain-free from RSDS! Miraculous? Possibly. At first I, myself, was naturally mystified almost stupefied at the dramatic medical turnaround/results. As more of the saga unfolds, however, I'm less inclined to believe that it's a miracle, but predicated on verifiable scientific evidence/facts.

What are the predominant teachable moments? What you may find medically informative and possibly even startling is that when Dr. Haber did an initial thermograph image of our granddaughter's right foot and it was almost entirely blue! Really! [From what I can gather second-hand (I didn't personally witness the treatments, but our son-in-law did) seemingly insufficient blood was flowing through our granddaughter's foot prior to her ultra-violet (photon) treatments.] Conversely, after a number of non-invasive ultra-violet treatments on our granddaughter's right foot, from a thermograph standpoint her right foot at first became almost entirely red and/or orange and subsequently entirely bright red and her ultimately currently being [temporarily at least (a few weeks) ] free from pain in her right foot and her right leg. [Dr. Haber and our daughter/son-in-law have the photos/thermograph images in various stages of our granddaughter's treatment to corroborate the cure!]

In any event from all current medical indications, our granddaughter has been suffering from a very painful malady--Reflexive Sympathetic Dystrophy Syndrome [RSDS] which previously has occurred rather infrequently in children versus adults, but lately it's become much more prevalent especially with the advent of the ever-growing popularity of soccer and other youth contact sports in the U.S. Out of utter frustration bordering on justifiable anger at the seemingly indifference, ignorance and ineptitude of the physicians in San Diego particularly at Rady Children'[s Hospital, we as a family naturally started to seek elsewhere viable medical treatment alternatives for our granddaughter. While our search wasn't exhaustive, we found that treatment for RSDS is apparently predominantly centered in Palo Alto, CA [Stanford], Pittsburgh, PA, [Pittsburgh Institute] Baltimore, MD [Johns Hopkins--but only for patients over 18 and not for children or teenagers under 18] and Boston, MA [Massachusetts General] particularly as it relates to children.

Our daughter and our son-in-law, therefore, made an appointment after getting an appropriate referral to admit our granddaughter to the "Pittsburgh Institute" for approximately three (3) to four (4) weeks of intensive physical therapy for our granddaughter--potentially five (5) to (6) hours [up-front supposedly very painful therapeutic treatments] a day seven days a week! But prior to that via fortuitous happenstance on the advice of one of our son-in-law's business colleagues they decided almost on an unplanned/unforeseen whim to give Dr. Haber an opportunity to strut her purported stuff. [Ultra violet (photon) technology used in her treatment of RSDS]

Parenthetically, our granddaughter recently just turned twelve. (12) Personally I can't think of a better 12th birthday present than to be after so many months of enduring excruciating pain to be eventually completely pain free. Realistically, it's probably still somewhat premature to know whether this dramatic medical turnaround certainly will be sustainable/permanent. While it's seemingly almost too good to be true for the sake of discussion if our granddaughter's RSDS cure is permanent, e.g., I honestly/truthfully think we're potentially witnessing a valid medical breakthrough and potentially a worthwhile story to tell on a national level and possibly even an international level worthy of potential publication in various prominent medical journals. If Dr. Haber's treatments ultimately work, and they seemingly have worked, those who are suffering from chronic RSDS may want to seriously consider Dr. Haber for possible future RSDS treatment. In a nutshell, what Dr. Haber does/did seems so simple; yet, "simple" seemingly turns out to be quite sophisticated when it comes to successfully treating curing RSDS! Best of all, miraculously or not so miraculously depending upon one’s perspective, Dr. Haber's methods and the scientific evidence obviously actually work!

The medical saga only gets more convoluted and murky, however, when it comes to the roadblocks of those engaged in traditional medicine and RSDS. Why? A principal of The Pain Management Center at Rady Children's Hospital naturally wanted to schedule our granddaughter for continued treatments after our granddaughter's recent hiatus from traditional therapeutic treatment. When our daughter informed her that our granddaughter "had been cured" and how she "had been cured" the principal at The Pain Management Center at Rady Children’s Hospital had the audacity to say that she and her colleagues didn't want to know "s..t (expletive deleted) from Shinola" about the alternative procedures/medical treatment. ["We're not trained or equipped to engage in this type of treatment!"]

Our daughter very similar to her mother obviously is a "Mama Bear" and proverbially a real pistol, but considering what our granddaughter went through--seemingly unnecessarily went through excruciating pain months for months on end--I think that while you may not necessarily be sympathetic to our daughter’s following comments at least you should probably be empathetic to her comments from a lay person's standpoint/perspective.

Again, our daughter doesn't mince words especially when she thinks she's correct and her parting comments to the principals of Rady Children's Hospital in San Diego were as follows: "Shame on you for not being more medically open-minded, medically inquisitive and medically intellectually honest/transparent!" "Shame on you for allowing our daughter to continue to suffer from excruciating pain unnecessarily when it was seemingly medically apparent that your medical procedures weren't working and in retrospect probably never ever would have worked!" "Shame on you for taking our/our insurance company's funds and having us and others expend unnecessarily considerable additional funds out of our own pockets because you superciliously and sanctimoniously fail to recognize viable alternative RSDS treatments that work but aren't recognized by the traditional medical community." "Finally, shame on you for putting your proverbial heads in the sand and not proactively investigating viable RSDS medical alternatives and letting us know that they exist, and as a result your utter disregard to follow your Hippocratic oath!"* Okay, dear daughter, facetiously please inform us as to how you really feel!

Parenthetically, moreover, representatives of Rady Children's Hospital anecdotally also seem to engage in a pattern of taking proverbial potshots at parents who justifiably brace them as "Mama Bears" concerning medical treatments for their children. Our daughter, e.g., actually has a physician [who shall remain anonymous for the time being] whose child now needs a liver transplant and the principals at Rady Hospital gave this physician/parent all kinds of grief and even questioned her mental stability when she justifiably started to raise an appropriate fuss about the medical ineptitude of Rady Children's Hospital in San Diego!!! Fair and balanced? You decide... Please let me know your sentiments and especially if you've experienced similar reactions from those engaged in traditional medicine.

Grey Hair & Grey Matter

*Modern Hippocratic oath

Modern version
A widely used modern version of the traditional oath was penned in 1964 by Dr. Louis Lasagna, former Principal of the Sackler School of Graduate Biomedical Sciences and Academic Dean of the School of Medicine at Tufts University:[8]
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not", nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

It's not an either/or situation. Everything I said in my first post still applies.

That's really, IMO, the only relevant question here. What, exactly, is this "verifiable scientific evidence/facts"? Is it scientific? Is it factual, or just evidentiary? Has it been verified, and if so, by whom?

There are literally hundreds, if not thousands, of "miracle cures" advertised on the web and elsewhere. Some may actually have some therapeutic value, some are just snake oil, and the rest probably lie somewhere between. These "cures" prey upon the suffering of people desperate for any kind of hope. Testimonial/anecdotal evidence is neither scientific, nor factual (proof), and rarely verifiable. There are methods and procedures for establishing such, and for very good reasons. Good science takes time.

There's another thread on NT right now about a guy hawking a "miracle cure" that may actually be poisonous:
http://neurotalk.psychcentral.com/thread161286.html

I'm very glad that your granddaughter is cured/pain-free. If this chiropractor (or whoever created this therapy) goes through proper FDA testing and studies, and the claims are proven according to accepted standards, I'm confident that it will be recognized by the medical community and become an accepted treatment/therapy.

Doc

adjunctive use of ketamine and LDN
 

Personally, I think things may be coming together. Specifically, in the adjunctive use of ketamine and low-dose naltrexone (LDN). And here I'm really building on the case reports of Nancy Sajben, M.D. http://painsandiego.com/category/crps/

The reason LDN is not more popular is that almost all of the CRPS population is currently using an opiate/opioid of some form, and going from that strait into LDN makes for an incredibly hard fall. But it looks like that the six to eight week respite that a two-week daily out-patient ketamine infusion (200 mg/day) generally provides, at minimum, should be enough time in which to wean folks off of opioids and then ramp them up on LDN, while at the same time continuing for as long as necessary the use of anti-seizure meds, etc. Sort of like the conventional practice of timing PT for the day after a sympathetic block. Only in this case it's a one shot deal, thereby taking away the insurance companies' best argument, of why should they pay for an expensive procedure that "only" affords a couple of months of relief.

You do it right, and once is all that's needed. Or so I want to think.

Mike

PS Forgot to mention that Dr. Sajben's patient finally plateaued on this elegantly simple maintenance regime:

Medications then were naltrexone 12.5 mg at bedtime and Namenda 55 mg daily in divided doses.

I don't think it's really ineptitude. They just don't really understand what it is or how to cure it. It might be a very long time until the technology and knowledge is developed. My guess is that prevention will prove to be the cure in the short run. It won't help us any but there's no reason more peoples' lives have to be destroyed by this monster if proper care is delivered very early on.

Part of the problem now is it's usually weeks until RSD is even suspected and the clock has been ticking the whole time. There's no reason with modern technology that they can't detect elevated nerve activity and shock.

SO DEEP!
I hope to come back, and read and understand this, since I have a world of experience.

I'm near Philly.
If a doc here (Or his nurses don't understand RSD) Well, Goodbye!

p


asb

It is a strong case you present on behalf of your beloved daughter and granddaughter. Believe me I have often felt these very same sentiments myself as a pain patient.

It has been a long time since I have posted here and I am sorry I haven't been in touch especially with those you that have shared your personal experiences with me up close and personal. Fmichael, I am way overdue on am email to you but I know you will understand.

Grey Hair & Grey Matter, I really appreciate your position on this matter with your granddaughter but I do have to add a couple of my own personal thoughts about my experience as an older RSD patient. After a long difficult treatment in Canada for my RSD that was a result of a failed bunion/foot reconstruction (2003) by a fairly new but so called competent orthopedic surgeon I moved to Switzerland. It is a wonderful country and we have a very good but expensive health care insurance coverage. At least comparative to the Canadian universal health care. I now pay premiums exceeding 6 times what I paid in Canada yet I do consider it to be above average quality of care here. What do I get for this more expensive and mandatory insurance premiums? Well I get pretty much the exact same treatments I had in Canada except that here they still refer to it as Sudeck's Dystrophy and unfortunately my current insurance has excluded me from covering most alternative/complimentary treatments for at least the next 3 years or so so that means I have to pay out of my own for most alternative treatments. What they qualify here as alternative or complimentary medical care is a completely different matter of which I am still trying to maneuver through that new minefield.

I should also qualify for you all that I am on a fairly nominal treatment plan in comparison to many others here on this site. I seem to manage to get by on regular infusions of bi-weekly high doses Lidocaine (relatively inexpensive in the insures eyes) coupled with tylenol 3's or co-dalfalgans as they call them here along with a very healthy dose of supplementary nutrients (some of which the health insure will pay for). I'm simply unable to function on any other drugs being prescribed for the wider audience here-within despite having tried many options with disastrous results.

That all being said I receive my regular infusions of lidocaine at a local clink, the Aeskulap Klink in beautiful Brunnen that specializes in offering full alternative/complimentary medical services in conjunction regular medically required needs. Most doctors are duel licensed as MD's and have alternative degrees of varying sorts. Despite much hope on my side none of the alternative/complimentary services I've been offered have provided any major relief for me above what I was already getting under the traditional medical care model. I have paid for many many alternative treatments that I believe the doctors have provided to me with out any real belief that they would work, they simply threw them at me in hopes to quiet my complaints just like my doctor in Canada who has said in the past, "lets give it a try". He was the one who shot me up with pamidronate that caused me with sever tinnitus and permanent hearing loss. At least these doctors I'm with now are not experimenting on me with dangerous drugs or invasive procedures like I have had in the past.

As I look at the comments I've made here I remind myself that most of us dismiss the basic fact that medicine is really a business and despite our needs as patients and family members of patients one must always be cognizant that this is a fact of modern medicine. We as patients will always be vulnerable to the risks of such business models being offered to us, whether it be from a doctors, pharmaceutical companies or modern day snake oil salesmen's perspective.

Despite my obvious skepticism I'm still open to new possibilities and I find your story of your granddaughters experience very inspiring so the last thing I would want to do is to squash any positive examples of recovery from this horrible condition. That being said I do I feel it is important to reiterate here for the community at large that as you have stated "it is evident that I'm less inclined to believe that it's a miracle, but predicated on verifiable scientific evidence/facts" and as such most of here on this site with some age and experience with this condition know full well that it is the teenagers who do usually make the miraculous recoveries, and thank goodness for that.

I am a fully functioning person who suffers from RSD but I don't let it get in my way. I deal with this each day as it comes and I refuse to be put down by it. Last week I had to have mole removed from my non rsd leg and ever since I've been having sudden flashes of warm burning spreading across the area where the incision was. As soon as it arrives I tell myself it's simply the fear of pain trying to take control, I take few deep breaths and it does seem to go away. Life really is miraculous.

Like Kathy, I once had to go to the Emergency Room, at the San Francisco General Hospital, where the doctors usually do not know RSD or do not want to treat RSD patients when these patients are having an RSD attack with intense pain because these doctors consider them as "difficult" patients.

I was lying on a gurney in my room, waiting for and expecting to meet one of these doctors. A young doctor came in. I did not know if he was a resident or a medical student. This day, his first concern was to examine me, with such "softness" so as to avoid hurting me because, unlike other doctors, he was kind and knowledgeable enough to see I was in intense pain. Then I got my injection of morphine to relieve the pain, as well as an IV bag because I had not eaten and drunk in two days because of the pain.

Your are going to wonder why I waited so long to go to the doctor... First, I had no transportation. I do not like ambulances because the very sight of paramedics scares the h*** out of my then very young baby. When my baby sees a paramedic, he becomes so white and starts acting like he saw a ghost. He then hyperventilates, which is really not good at all for a baby with Cystic Fibrosis. I know it is not paramedics' fault (I really believe U.S. paramedics do a wonderful job), but I need to protect my baby. He is so fragile.

I had to call my boyfriend, who left his job after letting his boss know he had a family emergency. He had no time to change when he came home to pick us up, me and my baby. He got to the hospital very quickly, thanks to the sirens on top of his police car. He later told me he chose to use this car on purpose because I had a medical emergency (my not eating and drinking for two days made me feel soo, soo weak and ready to pass out) and because the sirens on his car would allow him to drive quicker through the traffic and the traffic lights.

Even though I felt really, really bad, it was so funny seeing the face of the triage nurse when she saw me with a man in a police officer uniform. Did she think he had just arrested me for some reason or did she think I was a homeless woman he had just picked up on the street? She did not notice he was my boyfriend even though he was carrying me (I would prefer to say cradling me) in his arms. My baby was strapped to my boyfriend in a baby carrier that slid sideways so my boyfriend's arms were free to hold me. Police officers do not do this for complete strangers, I think. I guess the presence of my boyfriend in his police officer uniform avoided me a wait that could have lasted 24 hours. I have already waited that long in this hospital. That time, the triage nurse probably wanted to forget about me because I was there just for pain even though, that day, the pain had been caused by a fall the day after knee surgery and with my baby in my arms. The knee took the hit, not my baby.

Anyways, this kind and compassionate doctor treated me well and put me back up on my feet again. He told me he was also a primary care physician. He asked me if I wanted him to be my primary care physician. I told him it would be wonderful if he had no problems with continuing to prescribe my fentanyl patches for me. Before, they were prescribed for me by another primary care physician when I was living in the Oakland hills. We later had to move to San Francisco because my boyfriend had to work there. The new San Francisco primary care physician agreed to continue prescribing my fentanyl patches.

The new primary care physician in San Francisco later told me he had done some research on RSD to better be able to treat me. I think he had a lot of courage for taking a patient (me) with a syndrome he had never heard of. It must have been a challenge for him, especially when you consider the fact that many doctors do not like pain patients, thinking they are all druggies. Having to do research on RSD must have represented a lot of work for an already very busy doctor. I can never thank this doctor enough (and my boyfriend, of course! :hug: ) for all the things they did for me (and for my baby.)

Re: good doc kitty
 

Not only do you have a great boyfriend, you found a caring and compassionate doctor willing to treat you. That is worth Gold. I am so glad you received the good care that you needed. Have a peaceful and blessed holiday. ginnie

Hands and feet
 

Hi, Just diagnosed with RSD. My toes and feet act the same way as yours. They can be blue or red and wither hot or cold. They can be the same or different. I took pictures of my feet to bring to the vascular dr. I was shocked to see how red one could be and ashen or gray for the other one. They can also be blue. My hands are similar. There are times that either my hand or feet are burning they are so hot or ice cold and can be used as ice packs. What meds are out there to help control the symptoms and the progression.