[meekobindi]

Hello I am fairly new to this site. My significant other has RSD/CRPS along with diabetes & we are asking for help. Please forgive me for being so presumptuous I am wondering if anyone out there might be able to help me, after looking into the abilities of the STS machine this Dr Rhodes guy touted about, seeing at the time a lot of great comments both on the forum site & other websites all encouraging & virtually nothing of a negative nature especially after reading part of the book Pain Banishment, that is online that is selling on the Amazon site for $425.00 if that IS the price of this book we could never afford it at that price, that is outragous. But it was on this & other information we had found that got us both interested in the STS Machine in the first place, & the fact that we found information that stated Dr Rhodes was intending to see the STS rolled out so that you could see someone closer to you & via video linkup he would tell the phyisian what to do what protocols to use on the patient, so armed with all of that we felt it was something worth pursuing but as yet to my knowlege this has not been done. So we don't know what to make of that.

For at that point in time he was staring down the barrell of reluctanly getting a pain pump & he didn't want to go down that path, he had a bad reaction to the pump trial injections, both physically when the morphine wore off & unlike the slow release morphine meds he currently takes there was no residue left in his system, so when it wore off the pain just hit & came back with such forceful vengence it left him reeling both mentally & phyically, it also gave him panic attacks & bought on nightmares that he would rather keep dead & buried, made him feel like something was eating his flesh,so he was considerably upset by all of this & in no hurry to repeat the process, & it greatly concerned him that he would lose all sense of himself become hooked on this stuff hence rendering him an addict, & that's all others would see, & morphine is something that binds him up & for some reason until he has used the bathroom that adds to pain that's already so bad, so armed with the knowledge we had that was before us we decided to give the STS a go figureing we had nothing to lose & possibly everything to gain.

Although because of where we live & didn't have the kinds of funds to go see Dr Donald Rhodes, it's not like one can just hop in the car & drive to see the man when you live on the other side of the world, we found that with a perscription from a doctor we were able to get the STS Machine from the company that sells them. Since getting the machine & with nothing but the manual that came with the machine my sigfificant other figured out how to use it, but although he has had some success without knowing which protocols he needs for his feet he feels like a sitting duck as the book doesn't say which protocol is for which area. Now he feels that any benefits he has recieved & any ground he made he now feels that the treatments are at a stand still & the weather being what it is here & without knowing what he needs to be doing, he feels like he is regressing fast. Some days he will wake up in so much pain that the meds don't kick in fast enough, & he is reeling with such intense pain that in that moment he feels he wants to end his life rather than endure one more day in this kind of intolerable pain, yet I have never seen anyone who wanted to live more. He has had RSD/CRPS for almost 9 years now & in that time almost everyone he held dear has abondoned him due to this hidious condition, he feels like a lepar & it makes him feel unwanted & unloved by those whom he thought were his loved ones be it friends or family.

Although he understands that the exact placement of the pads is crucial, & to look at the book that came with the machine it seems that the potocol diragrams themselves seem like they are backwards which at times when pain is intense makes for a fuzzy mind & little patience, gets extremely frustrated, which isn't helping him, for my boyfriend it's more heat than cold that makes his RSD/CRPS a living nightmare.We have spoken to someone who either has been or knew someone who was either a patient or an associate with this Dr Rhodes guy on another site but have been told that unless he is an established patient he can't be helped, but as this person didn't have RSD/CRPS they were unable to help all we wanted was to know if someone could clarify which protocols he needs to try, so that's out of the question. We feel like any door that gets opened is suddenly & brutally shut & no one is willing to help.

We also became aware after getting the machine that anyone saying anything negative about Dr Rhodes or the STS were being targeted by his lawyers & I am assuming threatened with legal action. It seems that there is nowhere that is safe to discuss the pro's & cons of a treatment, so that people can make an informed choice, there was something written on this forum site from a converastion between two women that I would liked to have spoken to one of them being in the massage or reflexogy industry I can't be certain but I think, from memory that was the case, but when I tried to find that particualr conversation I could no longer find it & I had wondered it it was removed for fear of litigation charges, or if these people were no longer members, like any other tpye of treatment one seeks for anything nothing has an iron clad seal of success attached to it, so when we go see a doctor & an operation is required are we each one of us taking a calculated risk the same with medications not all medications work for everyone.

So if anyone out there has had some experience with the machine I am wondering if you could see your way clear into helping a fellow sufferer,I am just trying to help the man I love. I have no wish to get anyone into trouble nor get into hot water myself, which is why I ask if anyone would be willing to help & you would rather not put the information forward on the public forum just send me a private message, if anyone can find their way clear to help it was be more than just appreciated, but If you feel unable to help that's understandable & I certainly hold no ill will, thanks for taking the time to read my letter either way.

Sincerely yours

meekobindi

[daniella]

I am not familiar with this other then this would make me worse. I know we are all different but having an electroid on my rsd area would give me so much pain and also delayed pain. Does your husband have sensitivity issues? It is very concerning to me that they would sell a product like this without a person to at least teach you how to use it properly. Is there another doctor that you could call in your area that could? Maybe if you call the company they could give you some direction. I am so confused so the Dr is bringing on a law suit to anyone who says anything negative? I think if this is the case you need to find a new direction. This is very odd. I hope your husband gets relief

[betsykk]

I would be one of the ones who got a letter so I will only say that it is my OPINION that the machine offered no relief for my daughter. We have had much more luck with ketamine and I heartily recommend it to everyone AND your insurance will pay it now that it has FDA approval for breakthrough pain.

[meekobindi]

Originally Posted by daniella

I am not familiar with this other then this would make me worse. I know we are all different but having an electroid on my rsd area would give me so much pain and also delayed pain. Does your husband have sensitivity issues? It is very concerning to me that they would sell a product like this without a person to at least teach you how to use it properly. Is there another doctor that you could call in your area that could? Maybe if you call the company they could give you some direction. I am so confused so the Dr is bringing on a law suit to anyone who says anything negative? I think if this is the case you need to find a new direction. This is very odd. I hope your husband gets relief

I am still learning about RSD, since this is the first time I have even heard of it let alone known anyone with it, I understand there is one that is sensitive to cold & the other to heat, my hubby has the one that is sensitive to heat, even a lukewarm shower is enough to trigger an episode. So in part yes sensitivity to anything warm, be is water, or heat in general. He can't drink warm or hot coffee due to it bringing on an episode, spicy food. He does better on cold days & is an excruciating amount of pain on hot days, when the weather is bad so is his pain level. At times his feet & sometimes his hands as so swollen they feel like they are about to burst open, but a great deal of the time since we got the machine his feet don't swell up & look normal, yet the pain persists. He doesn't understand since we have read that there should only be a one to two degrees difference in normal body temperatures but yet for the most part he has little or no pain when the temperatures are 21c-71f or below any higher than that he suffers to the point where he wants to die rather than live like this.
No there is no doctor that is able or willing I don't know which, as I said he was told by someone else on another forum site that as he wasn't a patient of this Dr Rhodes guy he can't be helped.

Obviously the STS machine was designed to be used by Dr Rhodes & his team, the guy who we purchased it from only has limited knowledge of it's use, he told my hubby all he could but it's not the machine we have the problem with it's knowing which protocol he needs to use for his feet as that's where most of his pain is centred, if as we have heard that when a protocol stops working you then have to try another, what we don't understand is what protocols are they, are they in the book that comes with the machine or does this Dr Rhodes guy keep the answers close to his chest. If anyone has used this thing for RSD of the feet & would be willing to help it would be much appreciated. Hubby is at the end of his rope as the pain is not easing any, & I have no way of helping the man who means everything to me. Today he has been in so much pain that he has taken his meds & nothing is working he hasn't used the STS in a few weeks due to the pain he is in right now, his chest is hurting so much, his arms are becoming numb due to the body trying to protect the brain & vital organs so it's the bodies way of keeping the vital organs alive, uncontrolled diabetes due to the RSD & anxiety attacks that he feels there are those who can help but won't or can't is the story he keeps getting told.

As far as I am aware & I only know what I have read when I stumbled across when searching for any information regarding the STS machine but it seems the Dr's lawyers are sending letters to those they feel are saying anything that may adversely effect the opinions of others who may have turned to him for help be it from a bad personal experience or those that see what he is offering as false hope. I don't really know but that's the opinion I got.

[hurting]

If a Dr. is selling a product that is suppose to help people to treat their problem then he must supply written directions for his product so everyone that buys this product know how to use it correctly. If this Dr. does not do this than he has no right to strong arm these people with his lawyer saying that you cannot say anything bad about his product. If it is true as to what you are saying about his machine not working right for you then all he can do is try to sue you but I would doubt that due to how much it would cost him. You read on here where SCS work for some and not for others. Are the SCS companies threatening people that they will sue you because you don't agree that it did not work on you.

Has this been tested by the the right government department to back up what this Dr. is claiming as well as other Drs. testing for several years.

What I can tell from what meekobindi has wrote is this Dr. is selling some type of machine for rsd/crps patients without any instructions on how to use it. If this is the case then he cannot tell anyone not to write how well it really worked for them. Buyers beware when spending $425.00 on something that is not truly tested by other Drs. Just because this Dr. is using this on his patients for treatment does not mean that it works.

Sounds like a modern day snake oil sales person.

[daniella]

This doctor should be sued. For not being ethical. First I have a problem with doctors selling products. Rsd and our pain is not a retail service but a serious medical condition. Is this Dr R a salesman or doctor? Then to sell it to you without taking you on as a patient is not ok. Then to talk about law suits when everyone should be open to giving back feedback both negative and positive is insane. I would think there is some medical board one could file a complaint
With RSD it is important to keep stress down. Which is like impossible but in ways you can anyhow. This just adds stress. Have you looked at other options for pain relief? Ketamine infusions,different meds,some other alternative like HBOT? Has you r husband seen a pain doctor? Is he on meds? Trust me i have times I beg to die from pain too and I know the heart break that has on my family. I know it must be hard for you to watch your husband as well. People do get to a better place with RSD but it takes finding the right treatment. Everyone is different so what impacts one may not anohter. I am very sensitive to weather as well so can relate as I sit hear swelling with high pain from humid/storms.
If I can help in any way I am an email away. Are you in the US?

[betsykk]

My daughter would be given different protocols by Dr Rhodes every few weeks. He does not share this information with you but instead he will fax you the newest protocol to try. Have you tried calling his office and tell them that you have the machine? Maybe someone would send you some protocols but I tend to doubt it.

Like I said, my daughter was in agonizing pain. Ketamine infusions have given her great relief and are approved by the FDA for breakthrough pain. Has Dr Rhodes latest machine been approved for pain management? I would start looking into another method of treatment if you can't get ahold of protocols.

[meekobindi]

Originally Posted by hurting

If a Dr. is selling a product that is suppose to help people to treat their problem then he must supply written directions for his product so everyone that buys this product know how to use it correctly. If this Dr. does not do this than he has no right to strong arm these people with his lawyer saying that you cannot say anything bad about his product. If it is true as to what you are saying about his machine not working right for you then all he can do is try to sue you but I would doubt that due to how much it would cost him. You read on here where SCS work for some and not for others. Are the SCS companies threatening people that they will sue you because you don't agree that it did not work on you.

Has this been tested by the the right government department to back up what this Dr. is claiming as well as other Drs. testing for several years.

What I can tell from what meekobindi has wrote is this Dr. is selling some type of machine for rsd/crps patients without any instructions on how to use it. If this is the case then he cannot tell anyone not to write how well it really worked for them. Buyers beware when spending $425.00 on something that is not truly tested by other Drs. Just because this Dr. is using this on his patients for treatment does not mean that it works.

Sounds like a modern day snake oil sales person.

There IS a book that came with the machine the cost of the machine was $4000.00US that came from the company but the instructions are unclear & it doesn't tell you which protocols are for what disease as it's been used for other diseases besides RSD/CRPS, it works by stimulating the nerves just as acupuncture & reflexology does. Although my hubby has figured out how to use the machine with the help by phone & email conversations of the sales person at the company it came from we have had no input from any Dr.
We were told by someone on another site that in order for this particular Dr to help us then first of all we MUST be a patient of his & only then can we get given other protocols of which cost even more money from the things we have been reading. We simply didn't have the funds to go see this guy who is in Texas, & with pain so intense we took a gamble & did the only thing we could do at the time we bought the machine. A couple of the main reasons we bought the Dynatron STS machine, was it's apparent approved by the Federal Food and Drug Administration in 2001 for chronic pain & it was written by the Dr in question that rather than going to this particular Dr that the machine was being rolled out both across the states & around the globe to YOUR OWN LOCAL Doctors where he would guide them via video or phone link up to guide them through the process, but as far as I am aware that hasn't happened. Hubby had some success with it but without knowing which protocols go where we are a sinking boat. Physically & Emotionally right now he is a mess, & I am not far behind. Financially we are not in good shape to go see this man, & all we want is somewhere where we can talk to like minded people maybe get some friendly guidance.
From what we learned from the sales person at the company we bought the machine from this Dr has not been forthcoming with information on this device, for sometime, we have no idea whether there was a war of words, but it became obvious that there was a parting of ways. I am aware that he has made an updated version of his own which he is selling to his patients so this time round only he holds the key.
Not being from a medical background I was under the impression that it was a Dr's sworn oath to help those in need, how can that be so when this man is not willing to help, unless you travel to HIM, well those who have this hideous condition knows that how can one travel when one can't even take care of their own needs, can't do the things they once enjoyed, let alone sit in a car or take a plane ride to get to help. Hubby has cancelled local Dr's appointments because he is in so much pain that he can't get out the door.Yet at other times he is almost no pain. We have seen that when he hasn't been able to go to the little men's room & I do mean both deeds, the pain is mind blowing excruciating we don't know why that is but once he has been able to go the pain is almost instantly at least halved if not gone almost entirely. We have no idea if there is a physical reason for this or that it's just coincidence. It's at those times when pain is at it's worst & no amount of his medications are working with the exception of binding him up, he would rather end his life then to keep suffering this way. I fear that one of these days his heart will just give out from the enormous strain it is under, or he will have a stroke. When pain is at it's worst his blood glucose levels shoot up due to his type 2 diabetes.
Thank you all for your input it is very much appreciated.

[meekobindi]

Originally Posted by daniella

This doctor should be sued. For not being ethical. First I have a problem with doctors selling products. Rsd and our pain is not a retail service but a serious medical condition. Is this Dr R a salesman or doctor? Then to sell it to you without taking you on as a patient is not ok. Then to talk about law suits when everyone should be open to giving back feedback both negative and positive is insane. I would think there is some medical board one could file a complaint
With RSD it is important to keep stress down. Which is like impossible but in ways you can anyhow. This just adds stress. Have you looked at other options for pain relief? Ketamine infusions,different meds,some other alternative like HBOT? Has you r husband seen a pain doctor? Is he on meds? Trust me i have times I beg to die from pain too and I know the heart break that has on my family. I know it must be hard for you to watch your husband as well. People do get to a better place with RSD but it takes finding the right treatment. Everyone is different so what impacts one may not anohter. I am very sensitive to weather as well so can relate as I sit hear swelling with high pain from humid/storms.
If I can help in any way I am an email away. Are you in the US?

Please let me stress one thing here this Dr Rhodes guy was NOT the one who we got the machine from, we purchased it with from the company who makes or at least retails them. To have seen this Dr Rhodes guy it was goin' to cost us well over $10,000.00US & we just didn't have that kind of money we used every dime we had just to purchase the machine at $4,000.00US & the pads alone are not cheap & I know of nowhere else that sells them apart from the company who makes them, & if they did they would more than likely cost a whole bunch more.
My significant other has tried virtually everything available to him, bar the Ketamine Infusions, & pain infusion pump, & of course the Ketamine Coma procedure which is out of reach financially, or he would even take that risk even though the stakes are high, the pain infusion trail he had he had a bad reaction to where once it wore off unlike the slow release morphine he takes now, left no residue so when the pain kicked back in it did so very swiftly & violently. He was having a lot of nightmares too of things that are better left buried, it made him feel like something was eating his flesh alive, & gave him intense anxiety attacks, the sweats & the shakes.

He has seen many pain doctors & this last one told him that liquid morphine is NOT addictive if that's the case then why is it NOT available to just anyone.Why are there so many addicts the world over if it is so harmless. All in all we are getting nowhere fast.

[meekobindi]

Originally Posted by betsykk

My daughter would be given different protocols by Dr Rhodes every few weeks. He does not share this information with you but instead he will fax you the newest protocol to try. Have you tried calling his office and tell them that you have the machine? Maybe someone would send you some protocols but I tend to doubt it.

Like I said, my daughter was in agonizing pain. Ketamine infusions have given her great relief and are approved by the FDA for breakthrough pain. Has Dr Rhodes latest machine been approved for pain management? I would start looking into another method of treatment if you can't get ahold of protocols.

Yes we have tried but again we were told that without him being an existing patients it's against the law for him to help. We would have even been willing to see someone locally if he didn't want to share the information outside medical circles. So that was why he wondered if anyone who has used the machine & has RSD/CRPS particularly in their feet would be willing to share information regardless of whether or not it works. Since it seems so many doctors out there either refuse to believe, don't want to help or unless it comes down to the almighty dollar, no one but other patients & their families know the extent of the heartache it causes. Now it seems that there are those who are being gagged not to say anything especially those that have had a bad experience. But how can others make an informed choice without ALL the relevant information, that would be like going on a roller-coaster ride that isn't safe, how can one make that call when there are vital parts that are not allowed to be discussed openly. My partner & myself are not interested in why this kind of action came about all we would like is someone ANYONE who may be able to help me help the man I love. I have no idea whether or not this latest machine has approval yet or not. I guess that information is not privy to those who are either dissatisfied customers or not patients.